Spotlight Story Program: Meet Lael Newton

We’ve all got baggage, but it’s the way we carry it, personalize it, and allow others to support us with it truly defines who we are as people. This is something that not only runs deeply into InvisiYouth’s programs, but also within the mantra of our new guest writer for this month’s Spotlight Story Program feature, Lael Newton.  A 19-year-old Australian, Lael was thrown into the chronic illness journey in her early teen years as she began having seizures, now diagnosed with Functional Seizures and Functional Neurological Disorder. While trying to balance all that was part of her life prior to her chronic illness to her life now, Lael has learned ways to adapt and excel. A big portion of that is using her health journey to connect, motivate and support others through her social media platform. InvisiYouth often says that YOU are the best teachers to give ideas and encouragement to others because chronic illness isn’t ‘one size fits all’ and Lael brings that forward with such confidence. Her advice for fellow chronic illness warriors, and our non-disabled allies is incredible and will fuel your hearts, we promise!

Hello beautiful people. How are you? I hope you are well in whatever season you are going through. If we haven’t met, I’m Lael, I’m 19, and I’m chronically ill.

I’ve been living this life I didn’t choose for nearly four years and it’s been one hell of a journey.

I was diagnosed with Functional Seizures when I was 16. To put it very simply, I don’t have epilepsy, but it looks like I do. I have seizures in the same way, but my brain is fine. Put my brain scans next to a healthy one, and they’re practically identical.

Functional Seizures fall under Functional Neurological Disorders (FND), where my brain works the way it should, but does some things wrong. For me, it’s how my brain processes stress.

While a normal brain would trigger the fight/flight response, my brain triggers a seizure to protect itself. My seizures are triggered by stress, both big and small. A small disagreement with someone, a major exam, and anything in-between, was enough to put me on the floor.

There is no cure, only management.

My life was flipped upside down in an instant. One second I’m playing rugby in my sports class, the next I’m on the ground. I haven’t been the same since.

I was having seizures once or twice every day for months. I dropped a quarter of my weight. I lost a lot of my hair. I lost most of me. I was falling asleep in class, and falling behind in everything. I couldn’t keep up with the pace of life I was used to. Everything was falling apart.

Everything that I loved was going away and I couldn’t stop it. It was terrifying.

I like to be control, but in an instant, the monster in my head was starting to take the wheel, and I’ve never felt more scared in my life.

This obviously didn’t help, because fear is stress, and stress ain’t great for me, creating a vicious cycle of unconsciousness.

My days are a weird mix of busy and quiet. Fitting in as much as I can into the short period of time where I can function, before I crash and need to lie down in silence so I can recover from the smallest of tasks.

I struggle with my memory, and will experience memory lapses often. I lose focus easily, and find it hard to concentrate. I will have days where I’ll be sitting in a room full of thick cloud making my thoughts hazy and difficult to understand.

I find that I can’t be in a room full of people without feeling uncomfortable, due to the crazy amount of overstimulation, which has always been one of my main triggers.

I struggle to go to big events with lots of people, lights and sound, simply because my brain can’t handle it. I’m constantly tired in every possible way. I will often need to take days off, just to regain some strength to keep going through the week.

Now, I’m so very blessed to say that I’ve been seizure free for almost a year. I’ve seen so many doctors who have helped me along the way, but it has not been an easy ride.

I still struggle with the same symptoms, probably now more than ever, but I’d rather deal with them than have a seizure every day.

I often get asked whether I would go back and change the way things went. Whether I would rather live a life without my condition. Without the tests and the needles and the hospital trips. And to be completely honest with you, I don’t think I would.

Do I wish I didn’t have to put up with all of this?

Yes.

Would I completely erase the journey?

No.

I’m a firm believer that everything happens for a reason. I wasn’t given this baggage to just stumble through life. I was given this to help those around me carrying the same thing. Offer a new way to hold it, a new way to drag it along, a new way to move around with it.

No one wants to go through this. No one thinks this chronic illness journey is a glamorous one. But if it helps one person, I’d do it all over again. No one deserves it. No one should walk this road alone. I would do it over and over again to help even one person feel less alone.

So, my chronically ill friends, I’m so sorry. I’m sorry that you have to walk this journey. I’m sorry that you have to deal with all the things that comes with this. I’m sorry that have to stumble through the day while putting on a happy face. I’m sorry that the words “but you don’t look sick” are thrown at you.

Please know, that you are strong. Really.

The strongest people are the ones that are at war with their body. I urge you to keep fighting. It gets better, it gets easier, you learn, and you grow.

You aren’t selfish for saying no to things. You aren’t a horrible friend for not responding to their messages or ignoring their calls. You aren’t lazy for struggling to leave the house. You aren’t a burden for the things you go through.

You are doing your best to survive, and that’s ok.

To my able-bodied friends, please remember that we are trying to fight a battle you don’t see. Please know that when we don’t text back, it doesn’t come from a bad place, it comes out of a place of self-preservation, where we’ve hit our limit and life is just too hard.

I hope that these few moments we’ve had together have left you with something. You’ve made my journey worth it.

I’m always around for a chat. If you have questions, ask. If you need a friend, let’s talk. I know this journey can feel incredibly lonely, so don’t be afraid to reach out to someone who can understand. Send me a message on Instagram @laelgracexx (I might take a while to respond, please forgive me, just trying to survive), I can’t wait to hear your story and share what I’ve learnt. You’re doing amazing!

~Lael x

Spotlight Story Program: Meet Lauren Perry

Finding your community, building your network, and boosting yourself up. These are all things that our latest Spotlight Story Program feature writer has not only incorporated into her daily life, but has projected into her activism as she empowers other young people in the disability community. And that focus on connecting with others and becoming your own best advocate stems deeply into all that Brighton, England’s very own Lauren Perry represents in her life. Living with Tourette’s Syndrome and Ehlers Danlos Syndrome, 21-year-old Lauren has needed to create power, joy and success for herself while also dealing with the journey that chronic illness can complicate.  She’s been super proactive, using social media to create her own platforms that allow for meetups with others living with chronic illness in the Brighton area, and her virtual platform with her blog and Instagram page @aticcersguidetolife, that allows her to raise awareness, connect with others, learn how to advocate even better and share about her health journey. And she also shows off her cool wheelchair with pink wheels, a must-see! Lauren’s packed so much life advice in her feature about her young adult life with health struggles and being part of InvisiYouth’s Global Brand Leaders Program that anyone can gain tips.

Hey! I’m Lauren, I’m a 21 year old disabled student living in Brighton, England. I set up my disability blog and Instagram page @aticcersguidetolife with a hope to raise awareness on life with hidden disabilities, advocate for those who are unable to do so themselves and educate people on the wider issues disabled and chronically ill people face.

Updating friends and family on my health was becoming pretty exhausting in the early stages of my illness, but I wanted to make sure they all felt included in the process as I knew they genuinely wanted to know, so starting my blog was a great way to document my journey.

My health struggles started after a coccyx injury following a fall at work when I was waitressing, coinciding with laryngitis that wouldn’t go away and at the age of 17, I became incredibly unwell.

I was sleeping for days at a time and my body was not healing properly. I struggled to get through my A Level exams and got mediocre grades. I went from a high achiever who played in bands (saxophones, clarinet, piano), ran, went to the gym 4 times a week, swam, played hockey, and partied—to the girl who had to stopped working, slept all day, and was in incredible amounts of pain in a matter of weeks. And I’ve never been the same since.

The doctors blamed my mental health initially. I struggled with panic disorder and depressive disorder, however I knew this was different. The debilitating fatigue was different. At its worst, I was sleeping 28 hours at a time. I woke up for one hour to have a drink and slept for a further 15 hours. This sleeping pattern continued till the moment I had carers at 20. I’ve had countless misdiagnosis’, painful scans, frustrating results and random symptoms- chronic illness is a journey .

Having a disability in my late teens, I noticed quickly how isolating that can be, particularly as a university student. It seemed that although there must be thousands of disabled students, I didn’t know any and I felt there must’ve been other people that felt similar to me.

I decided to set up ‘A little poorly- Brighton’ in 2019 after a year of being at university. We now have over 400 members in Brighton, England where I have founded an online community and we formed friendships and a support network for chronically ill people living in Brighton and Hove, along with their carers. Now, I regularly arrange meet ups where I have professionals run workshops such as cooking with a disability, accessing work with a disability, improving hospital experiences for chronically ill patients, self-defense classes, art therapy, just to name a few.

In addition to ‘a little poorly – Brighton,’ I also take great pride in my Instagram page and newly updated website. Accessibility is a topic incredibly close to my heart. Through my platforms, I strive to help people access the inaccessible world. InvisiYouth has inspired me to build confidence to make friendships online with people all over the world. The Pandemic has taught me that accommodations can be made for disabilities. Online learning has been incredibly accessible to me as a disabled student, I spent many months battling for more support

I started my health journey not truly identifying as a disabled woman and rather just a 17 year old girl. I saw myself with misdiagnoses and I didn’t feel confident or educated in disability. Doctors often say “I think you have this” and then leave you with so many unanswered questions surrounding this new potential diagnosis.

I’ve learned to laugh in the most unfunny moments, make the most out of bad situations and I have shown my mental strength and resilience is important above all. I think I’ve become incredibly calm. In situations where perhaps someone else may panic or be overwhelmed—for myself—relatively these things often feel ‘small’ and I’m therefore pretty good at staying calm.

I’ve sadly had to grow up a lot quicker than my peers, but I also think that I’ve become much more understanding of other people’s emotions and gained a level of emotional maturity as my priorities have had to shift being unwell.

My diagnosis list is ever growing. Tourette’s Syndrome hit me out of the blue at 19 in my first year of university. I lost my speech out the blue for two weeks when I was 20 following a hemiplegic migraine which replicated a stroke.

Nothing surprises me anymore.

Honestly, if you don’t laugh, you’ll cry and that’s the best way we’ve found to approach my illnesses. It went from “why me- it’s always me” to “only me, typical” making a positive out of a negative or light and laughter out of an awful situation is very important. As chronically ill people, we often joke that we are unqualified doctors.

I truly believe the sheer knowledge that having a chronic illness has taught me is fascinating and perhaps something I would not have delved into had I not become unwell. I like to consider myself a receptionist or admin assistant to my own body—I appreciate my disabilities for supporting my love of stationery and organization—I bet you’ve never seen paperwork as organised and colourful as mine!

As kids we always get told not to talk to strangers and to some extent, I agree. However, had I not found such an amazing online community through Instagram I wouldn’t have found InvisiYouth, its Global Brand Leaders Program, or other content creators with disabilities. I’ve spent hours messaging other people on the internet .

Speaking to people online is such a powerful tool in management of disability. I’ve found many of my consultants through Facebook groups. My Rheumatologist who diagnosed my EDS was recommended through a Facebook group. My sleep consultant was recommended by a few people on Instagram. My cardiologist similarly.

It makes me feel like there’s loads of people like me. People who just ‘get it’ but can also support me in my journey and answer any questions from the perspective of poorly people not just as medical professionals.

The feeling of bumping into people who follow me on Instagram brings me so much happiness. The few times I’ve been approached in the streets after my pink wheels have been spotted from a distance on days where I’ve been struggling or having issues with accessibility- it makes all the appointments and the hours of pain worth it.

In that moment you feel less alone and feel like what you’re doing is really important. It’s comforting to know when you have a weird symptom that your doctor has never seen before, that there’s someone on the other side of the world who has it too and has a little bit of wisdom that might help.

  • I suggest having a list of all our conditions, medication, allergies and care needs summarised to take to appointments is incredibly useful, it really helps save time in appointments too. I used to get really frustrated when I felt like most of my appointment was spent covering medical history and less on my current issue.
  • Don’t be afraid to tell doctors or medical professionals what you need! You are an expert of your own body!
  • Find your people- there are people out there for you, who will understand you, support you, and think like you. Put yourself out there! People will put effort in and people will make time if they want. No one is ever too busy for the people they want to see!
  • If you don’t laugh, you’ll cry.
  • You’re braver than you believe, stronger than you seem, smarter than you think, more loved than you’d ever know and twice as beautiful than you ever imagined

My main message to share: You can do anything you want to do. The world might not be built for disabled people, but if you find the right people and understand your own needs, you’ll be able to access the inaccessible!

Don’t worry about other people’s judgement for any step of your journey. You should be able to live life to the fullest and enjoy it like anyone else your age.

Not all wheelchair users can’t walk just like not all disabilities are visible. Society strangely seems to have taught us the opposite.

Accepting I needed to use a wheelchair in order to have fun/ live life as my peers do has honestly been the best decision I have ever made.

Spotlight Story Program: Meet Jasmine Chen

Perseverance, energy, adaptability, joy and wisdom. These are all traits we try to supply to all our young adults in the InvisiYouth community, and all perfect descriptors of our newest Spotlight Story Program feature writer, Jasmine Chen. From New Jersey, Jasmine is not your average 28 year old because she’s also a double lung transplant warrior after dealing with RSV. Her chronic illnesses have given her the life experiences to look at the world with such an empathetic and passionate lens. With her eagerness to improve her daily life, Jasmine has advocated not only for her physical health, but also her mental health, empowering others in the benefits of therapy too. We are so excited for you to read Jasmine’s story, and learn her five life lessons that you can easily apply in your daily life too.

My name is Jasmine, I am 28 years old from New Jersey and in July, I will be two years post- double lung transplant. Despite all the challenges of the past two years (and a pandemic to top it off), it was the best decision I ever made, and managing this condition constantly reminds me of what really matters in life:  family, friends, and finding purpose.

Every year, my birthday would come around, and every year, I would blow on my candles and wish for the same thing: to have healthy lungs.  My chronic health journey began when I was three: a doctor’s visit turned into a hospitalization of six weeks; while under the hospital’s care and observation for pneumonia, I caught RSV (Respiratory Syncytial Virus). As a young child, I was much more vulnerable to the virus, and the RSV ravaged through my lungs in a short period of time.  Even though I won the battle, the aftermath of permanently scarred lungs turned into an ongoing war.  I was a confusing and rare case, and the doctors tentatively diagnosed me with Bronchiolitis Obliterans.

When I entered my double-digit years, I graduated from oxygen dependency around the clock, and began physically attending school part-time.  Managing a depleted lung function on top of asthma and a defenseless immune system, my head was always calculating ways to save energy, maximize efficiency, and survive: I would gauge whether the energy spent trekking to my locker outweighed the expense of carrying around a heavy textbook.  My normal speed was a slower pace than the average student and I didn’t tend to have the breath to converse, and so I found myself walking alone a lot.

College made it more apparent that invisible illness was both a blessing and a curse.  Being able to blend in with the crowd around campus helped because it did not garner any unwanted attention.  On the other hand, I found myself often struggling to convince professors, friends, and people in general that I had a disability. A lack of visible proof resulted in many occasions where ignorance fed into a gaslighting culture and my imposter syndrome constantly minimized my suffering.

Dealing with society’s ignorance and treatment of my disability is on par, if not arguably worse, then managing the health struggles itself. 

For example, there were times I had to choose between my health and grades when a college professor refused to allow me to miss the final exam when I was ill.  There was the time HR called me in because an anonymous coworker reported me for “abusing” my handicap spot. Did I feel anger, resentment, and frustration when these situations happened?  Absolutely. Accepting that these things will happen and learning not to get stuck in it is a lifelong challenge.

Here are some of the things I would tell my younger self if I could:

#1: Learn to self-advocate. Over time, I learned to make my thoughts and concerns louder, whether that was dealing with coworkers, nurses and doctors, or insurance.  I used to believe the right way to be humble was by obediently following directions, and trusting those in charge, but eventually I realized it was important to be assertive and vocal while also doing your own research and thinking for yourself: it is possible to both retain humility and make your voice heard.

#2: Be gentle with yourself. You are more resilient than you think. People with chronic illnesses tend to experience the best and worst of life. Sometimes life throws curveballs at you, and many things are simply out of your control.  You will meet some unfriendly people, face complicated health issues, and have bad days. But you will also meet some amazing human beings, overcome those challenges, and have great days.

#3: Do not be afraid to seek help. Therapy is a lot like dating: when you meet the right one, it can be cathartic and life-changing. I built up the courage to overcome the stigma of therapy and sorted through several therapists before I found the right one. I began therapy during a dark period in college where I felt isolated, lost, and seriously wondered what the point of carrying on was. These sessions not only helped me navigate through the mental roller coaster of pre- and post- lung transplant, but also forced me to confront my own self-doubts and fears, ultimately empowering me to find and create the life I envision for myself (this will always be a work-in-progress).

#4: They are not a reflection of your self-worth. The level of your academics, the number of friends you have, and the experiences you may be deprived of are not your fault. You will meet various unique hurdles in life, whether they be people or circumstances. The amount of classes I missed, especially during the winter, was reflected in my grades.  There were friendships that died instantly or faded over time, whether they be because of betrayal, rejection, ignorance, or isolation.

Over time, this perpetuated a greater reluctance to disclose my health condition, for fear people would keep their distance once they knew.  But none of these difficult relationships or experiences define who you are or what your value is as a human being.

#5: You are the author, director, and CEO of your own identity. “She doesn’t like to mix negative and positive energy…”  This is a quote from one of my favorite movies, 50/50 (one of the few realistic movies that does not feed into an “inspiration porn” portrayal of illness).  Adam explains to his friend Kyle that his girlfriend has trouble dealing with the fact that he has cancer and refuses to mix her normal, able-bodied lifestyle (“positive energy”) with the “negative energy” of the hospital, which was a culmination of Adam’s illness and pain. For the longest time, I avoided using my handicap sign because I denied that I needed it.

I wanted one insignificant part of my life roaming the parking lots to be separate from my chronic illness life: instead, I gave myself the unnecessary burden of trying to live two identities.  But the truth is, I don’t have to choose between me who is ill and the parts of me that aren’t.  I am both.  I am just me: You are the only one who gets to define who you are. 

After some post-transplant complications, today I am at roughly 75% lung function as opposed to 16%.  I take a plethora of pills on a daily schedule, I get my blood drawn regularly, I converse frequently with my doctors and undergo whatever procedures are required, I have “moon-face” from steroids- occasionally, I argue with insurance.

But I am reborn in some sense, experiencing everything with new lungs and lung capacity I never had before.  I’ve learned to meditate and savor moments like when I’m safely at home, appreciating the silence and the privacy of my room- things I do not have when hospitalized.

Everything I’ve gone through has grown greater my empathy: I see the hidden pain in others’ eyes because I recognize it so clearly in my own.”- Melinda Means.

My first time hiking up three miles, first time walking up and down the stairs more than twice a day, and more recently, the first time dancing for a couple hours at one of my best friend’s weddings. Looking forward to many more first times.

 

Spotlight Story Program: Meet Isabella McCray

Letting go of the illusion, and fully embracing the life you’re living now. That’s a prime mindset InvisiYouth advocates through its programs, and it’s a focal point of our latest Spotlight Story Program feature writer’s daily life. Say hello to the American stellar teen, Isabella McCray, who has not only celebrated a high school AND Associates degree graduation this month, but uses her platform to raise awareness of the chronic illness she lives with, Lupus. This autoimmune disease is life-altering, and since her pre-teens into her later teen years Isabella has needed to balance her health changes with her life changes. Isabella’s journey with Lupus shares her vulnerable strength and how her reclaimed her bravery through her flare-ups, even embracing the pains to live life at its fullest. Now with eyes set on being a pediatric nurse, Isabella is allowing her voice to encourage community connectivity and support, while sharing what it’s like living and managing Lupus. And with May being Lupus Awareness Month, we knew having Isabella share her story would educate and empower many other teens in the Lupus and autoimmune disease community! 

Hi, my name is Isabella McCray and I am a chronic illness and Lupus advocate, inspiring and encouraging young adults like me! I use my platform to talk about all things chronic illness and spread the word about what it’s like living and managing Lupus.

When I was little, I went to preschool and my teacher used to always rub and massage my legs because my legs were always sore. Eventually, it became difficult to run and play, to climb stairs, and if I had exposure to sunlight/heat, I would break out in hives.

I went to my pediatrician and she diagnosed me with growing pains.

Fast forward 2014, I saw visibly swollen glands and I visited my pediatrician again and she referred me to an ENT doctor. He discovered in my blood some abnormalities and referred me to my present pediatric rheumatologist. He ordered various blood tests and on my next visit with him, I was diagnosed with Lupus SLE.

I recall searching what it was and reading about the symptoms. I experienced each of them. Joint pain, headaches, fatigue, butterfly rash, hair loss, etc. I was just 11 when I was diagnosed with Lupus. I was a young child and I didn’t know how to feel or how to accept my diagnosis. I also didn’t know that my life would change forever.

In the years following, I learned to managed my chronic illness; that had no cure. My classmates didn’t know because I didn’t want them to view me differently. However, it was the year 2017  when my journey crossed and I discovered new bravery for every aspect of my life. I had my first flare-up; I was home-bound from school for 5 months, and the most time I was admitted in the hospital being 2 weeks. I had to tell my peers about my condition because of my absences. It was at that point that I was at my lowest.

I didn’t have the bravery I held when I was little. I was in unbearable pain and I was hopeless of things getting better. I started losing my hair, which was 14 inches long and my appearance changed. I consulted with a chronic illness hairstylist, who specialized in haircuts for Lupus patients. I had dreadlocks since I was 4 years old and getting them cut, I felt like I lost one of the most important parts of what made me.

In light of my insecurities and challenges, I decided to cut my hair.  I immediately made adjustments to my schedule and my classifications with my peers.

This did not sit well with some and I was subjected to bullying. I experienced emotional, physical, and mental pain but I never gave up. It wasn’t that giving up was an option because it was.

However, I didn’t let the pain and suffering I endured break me. Instead, I started embracing the pain and turning it into strength and inspiration.

Experiencing a life-changing illness that changes your outlook on everything is stressful and overwhelming. That is why I use my voice to bring awareness to chronic illnesses and inspire others in this community to hold on and if you feel like giving up, you have a whole community to back you up.

Despite our limitations, we can develop patience and discover hope in the worst of situations. Because battling a life-altering illness is a tough journey and changing directions in life is not a bad decision. It just allows you to change your story and experience the high and lows with an amazing support system on social media.

Being part of a community so empowering and influential, and it encouraged me to share my voice and interact with others. I have grown and matured to know my worth and who I am, personally. I am compassionate, caring, sweet, understanding, and forgiving! I experienced so many things in my childhood that I should’ve experienced now being a young adult. I was such a private person growing up, but making my diagnoses public was one of the best decisions I made.

I had to face unknown experiences, having hope and strength and the mindset of coming out of these experiences even stronger. I became an advocate and not only for chronic illnesses, but also for my education as well.

I am currently a senior in high school, graduating with my high school diploma and Associates of Arts degree. Being afforded the opportunity of encountering many doctors and nurses on my various visits to the hospital inspired me to pursue and further my education in nursing to hopefully become a pediatric nurse.

During a visit with my specialist, my mom saw a pamphlet about Make-A-Wish Foundation. She reached out and contacted them about my journey and how far I’ve come and they wanted to have a meeting with my mom and I. Personally, whatever my wish was, I wanted to bring awareness to Lupus.  My Wish was to meet the cast of Good Morning America. Robin Roberts is an inspiring role model who I still admire today. My wish was granted, after several months, and it was an experience I will never forget!

Throughout my journey, I learned to let go of the illusion that it could have been different and understand my purpose now. It’s not every day you’re going to feel your best, and I can’t even count how many pep talks I have with my body every day to function and “get it together”!

The funny part is I’m still the same as before, I’m just diagnosed with a life-changing illness that presents challenges. I’m just stronger, wiser, more compassionate, and my sense of humor is a bit dark.

People manage their chronic illness differently, it’s whatever works for you. At the end of the day, you made it, and that itself is a victory. Know your limitations, enjoy life, take your medications, be yourself, and most of all, rest and breathe because you are here, now.

Spotlight Story Program: Meet Abbie Stapleton

In honor of Endometriosis Awareness Month, we are honored to have one of our GBL Ambassadors from England, Abbie Stapleton, sharing her health journey and some major life tips that will be fueling you to bring kindness into your life. Founder of the blog and Instagram platform, Cheerfully Live, Abbie has fused her personal experience going through the long diagnosis process with her joyful content that’s uniquely styled to provide relatable advice with empowering young adults in this chronic illness community. You will not only learn a lot about Abbie’s diagnosis journey with Endometriosis as a teen dealing with medical professionals not taking her symptoms seriously, but you will also learn how Abbie has preserved and uses her experiences to motivate in this empowered community of wonderful women around the world!  Now living with other diagnoses like Fibromyalgia and Costochondritis and Interstitial Cystitis, Abbie’s wide range of life experience lets her connect with many, and her platform truly is unique and joyful all her own.

Hi I’m Abbie, the founder of the Cheerfully Live blog and Instagram.

When I was 14, I experienced my first episode of excruciating pain, little did I know that I would have debilitating pain for the rest of my life. Every month, my periods would come and I would be bed-bound, unable to walk, fainting, with nothing working to ease my pain. I was back and forth seeing healthcare professionals month after month.

Every time I was told nothing was wrong.

My tests would come back clear and I was always dismissed as being the “unlucky one”, told I had a “low pain threshold” and that it was “part of being a woman”. I was even once asked by a doctor “are you sure you are not over-exaggerating?”. It wasn’t until my pain became chronic in December 2018, that Endometriosis started being investigated. I was sent from urology at first as they thought I was having urine and kidney infections that just wouldn’t clear, but then they realised my pain was more likely related to Endometriosis.

But when I saw a gynecologist, I was told that I could “never have severe Endometriosis because I was too young”. I pushed for an MRI to rule that out and to her surprise, my scans showed severe, deep-infiltrating Endometriosis. The relief I received after I got my results was huge! After years of gaslighting from healthcare professionals and feeling like the pain was all in my head, I realised my pain was real!

I was immediately referred to an Endometriosis specialist who tried me on the mini pill for 6 months, but unfortunately my pain only got worse. I finally had Endometriosis excision surgery with an Endometriosis specialist in December 2020, a year after being put on the waiting list. They found Endometriosis all over my uterus, left ovary, my bowel, bladder and both my kidney ureters.

During all of this I was also diagnosed with Fibromyalgia and Costochondritis and during my Endometriosis surgery I had a cystoscopy which revealed my bladder was chronically inflamed and that I had Interstitial Cystitis (also known as Bladder Pain Syndrome). Thankfully I’m now on the road to recovery and feeling some relief from my excision surgery, however I’m also now undergoing investigations for possible Fowler’s Syndrome and PoTS (Postural Orthostatic Tachycardia Syndrome).

When I was being investigated for Endometriosis, I needed a place where I could speak to others who were also going through the same thing, it was an incredibly challenging time, not only on my physical health but also my mental health. So that’s when I set up my blog and Instagram Cheerfully Live. I used my platform to document my journey, chat to others who were going through the same as me and share any advice which had helped me whilst going through the diagnosis process.

I’m so thankful for this community and my little platform – I’ve not only been able to support so many women in getting an Endometriosis diagnosis, I’ve encouraged them throughout their journey and shared helpful advice. I’ve also found comfort through everyone’s kind words and knowledge.

I’ve learnt so much about many different chronic illnesses and how best to support others, which has been invaluable!

There’s been so many amazing opportunities since starting Cheerfully Live such as becoming a GBL for InvisiYouth, speaking on the radio to share my story and collaborating with many amazing brands, charities and companies on raising further awareness for chronic illness!

And lastly, living with Endometriosis or any chronic illness is hard and so I wanted to share with you a few top tips that I’ve learnt along the way that have helped me cope living with my illnesses, both when advocating for yourself in medical settings and just in general life:

  1. The biggest piece of advice I could give is to get yourself invested into the chronic illness community! There is such a wonderful presence online of people sharing the realities of living with chronic illnesses on Instagram, but Facebook is also amazing for joining different groups that share lots of helpful advice. Also, Endometriosis UK offers face-to-face support groups, as well as lots of accurate information, so I’d definitely recommend their website, it’s a great resource.
  2. Research and really understand your condition, so that you are best able to advocate for yourself.
  3. Be honest and open with those you trust around you. Allow people to really see what it’s like living with your chronic illness, let people in, allow them to help and support you!
  4. If you are struggling to get healthcare professionals to listen or feel like you aren’t able to get answers – keep going and trust your instincts! If you know what you are experiencing is not normal, please keep fighting and advocating for yourself.

Being diagnosed with many different chronic illnesses has definitely made me the person I am today and in a way I’m grateful for the experiences and resilience that having a chronic illness has given me! I’m a much stronger person than I used to be 3 years ago, I am more empathetic and understanding of people’s situations. I fully understand now how debilitating fatigue and living with pain every day can be, but also now realise that you can’t always see on the surface that people are struggling.

So the main message of this piece is to remind you to be kind (especially to yourself) – you never know what someone might be struggling with under the surface. Your kindness and empathy might just change someone’s day, maybe even their life! So don’t wait to be kind, be kind today!

Spotlight Story Program: Meet Rachel Hoy

Meet Rachel Hoy

Starting off 2021 with an upgrade to our Spotlight Story Program because it will now be MONTHLY human stories told BY young people FOR young people in the chronic illness/disability/mental health community! 

There is no better person to start the Spotlight Story Program for the new year than lyme disease activist and owner of the popular brand Tee Spoonies, Rachel Hoy. Being part of our Global Brand Leaders Program for two years, now as a #GBLAllStar, Australian Rachel has been such a firm believer for empowering young people with chronic illnesses to advocate for themselves. This coming from her experience living with Lyme disease and co-infections, along with POTS, MCAS, interstitial cystitis and autoimmune conditions. She understands that balancing life, work and chronic illness takes time–especially living with Lyme disease in Australia as comprehension and treatment access is harder to come by–and learning how you empower yourself to enjoy and succeed in life with any health struggles was something Rachel was super passionate for, and it resulted in her creating her own brand Tee Spoonies. Selling ethically made products like pocket tees, scrunchies, cards and more, Rachel has built a community behind Tee Spoonies that mirrors her style of activism perfectly!

My name is Rach – I’m a 28 year old Australian living with Lyme disease & co infections as well as POTS, MCAS, interstitial cystitis and autoimmune conditions.

I was infected with Lyme & co infections on a trip to the USA after finishing my Master’s degree six years ago.

The first two years after getting sick I spent most of my time searching for a diagnosis, only to find out when it did come, that the hardest part was ahead of me.

At 22 years, I had travelled the world, completed two degrees and worked as youth state manager and campaign designer for World Vision Australia, so having to step back to focus on my health was a steep learning curve.

Living with chronic Lyme disease in Australia is especially hard – it is recognised and understood even less here than overseas, which means limited access to doctors and treatments.

After six years of living with Lyme & co my illness has really progressed.

My main symptoms are severe joint pain, fatigue leaving me mainly housebound, headaches/migraines, gut, bladder and mast cell problems, and neurological issues including up to twenty seizures per day.

I learnt rather quickly how tough it could be living with chronic illness as a young person, including doctors who denied the severity of my illness and friends who left my side in the hard times.

I also realised the apparent need for us to be continually advocating for ourselves as chronically ill youth.

One day I had a light bulb moment and realised I could combine a number of my passions together: advocacy, ethical consumerism and design, in order to raise awareness about living with invisible illness.

My first design idea with Tee Spoonies was the invisible illness pocket tee, which has grown to be the most popular!

Having the tee resonate with so many invisible illness warriors has meant a lot.

I sew all of the pockets myself which adds a personal touch.

The chronic illness community is important to so many, and being a part of it in this way, and being able to create products that empower fellow spoonies has been a blessing.

Working with InvisiYouth the past two years has been a great experience. I’m proud to donate 100% of profits from our fundraiser upcycled scrunchie packs & 50% of profits from our recycled paper gift card packs to InvisiYouth.

Our brand is all about making unique, sustainable, ethically made products that are a labour of love.

We also donate 10% of all profits to the Lyme Disease Association of Australia. You can check out more on our website here: teespoonies.com

If I could give some pieces of advice to young people struggling with the throws of chronic & invisible illnesses it would be to remember your inherent value in this world over anything you could possibly accomplish.

Goals are great but values are key.

Often living with chronic illness can mean pushing back or rearranging timelines or goals, which can be disheartening, but who you are in life is a lot more important than where you are in life.

And if you’re reading this now I already know who you are is amazing, because the perseverance, resilience and strength living with serious illness requires does not come easily.

Secondly, you are not alone.

No matter how lonely, devastated or isolated you feel – there is a community out there who understand what you’re going through, and want to support, empower and help you in any way they can.

And lastly, YOU know YOU better than anyone!

Trust in yourself and advocate for your needs… with a little help from your friends 🙂

*to learn more about Rachel’s involvement in our GBL Program, click here. And to learn more about Rachel’s products with Tee Spoonies, click here.*

 

Founder Dominique’s Blog Presents … Podcast Master Class Miniseries

September 8th, 2020

It’s not an understatement to say 2020 has been anything but calming or as-planned. Rather it gave room for quite the opposite emotions.  A global health pandemic resulted in many being in quarantine, especially those that are immunosuppressed like myself in the chronic illness and disability communities. As we all have transitioned to being home—many working or studying from home—and we enter the last quarter of the year, lots of people have been searching for new content to bring a boost of energy into their days. Streaming TV series, finding those books we ‘haven’t had time to read’ and adding more fun activities have become part of our new daily regime. And what’s one thing that has been considerably boosted during quarantine and new hybrid work-from-home/schooling-from-home models?

Finding new podcast series to binge or jump into listening!

When the quarantine hit the InvisiYouth HQ of the NYC area, it definitely rocked our nonprofit’s team and we had to not only reevaluate a lot of our programs and plans for the years ahead, but also had to switch to all things virtual and work-from-home. When our video podcast series, InvisiYouth Chat Sessions, had to be put on hiatus (and we just started our third season, so we cannot wait to get back into film-recording!) we switched to creating an Instagram Live miniseries that ran for almost four months!

If you haven’t checked out the InvisiYouth Quarantine Coffee Break miniseries, you must do so ASAP as some of our episodes are on our IGTV.

But something we were thankful for was a project we actually started last year that is all about our love of podcasts and the incredible hosts that lead them! Seeing the wonderful impact podcast shows can have on the young adult community has made us want to highlight some of our most supportive and loved hosts, but also let them share their advice for this generation!

So many of you have asked us what it takes to start a podcast, the advice that we have gotten from our different empowered special guests on InvisiYouth Chat Sessions, and what are some of the dreams that many podcast hosts have for their future shows and community. We wanted to give you advice and tips to podcasting, some life lessons these hosts have gain from their guests, and give you an opportunity to learn more!

I am so excited to share these five incredible podcast series and their wonderful hosts!

Plus, at the end, I’m also going to give you some of the most memorable moments from the InvisiYouth team as we look back on all our episodes of InvisiYouth Chat Sessions.

Please give a listen to all these podcasts, and make sure to subscribe to them too because their shows are so much fun!

Uninvisible Podcast, hosted by Lauren Freeman

Website        Spotify       Apple Podcasts       Instagram        Twitter       Facebook

• What’s your podcast’s description/all about? 

A: Uninvisible Pod is a show about chronic and invisible illness – from the perspective of patients, caregivers, and practitioners across the spectrum of healing modalities.

• What inspired you to make this podcast? 

A: Like so many others in the Spoonie community and beyond, I got inspired…when I got sick. In 2017, I was diagnosed with Hashimoto’s disease and sleep apnea; I’ve also lived with depression and anxiety since I was a teen. I’d been working in the women’s health activism space, and it shocked me how many people in my network started coming out of the woodwork with thyroid disorders and various invisible conditions – that we’d NEVER talked about – when I went public with my news. My background is in acting and voice work – so it felt incredibly natural to give these enlightening conversations a platform, or a soapbox, if you will – by way of recording them. And I haven’t looked back!

• What is a favorite or memorable episode so far?

A: Too many – these episodes have become so personally meaningful and fostered amazing new relationships that have enriched my life in so many ways. I definitely fangirled HARD over Ilana Jacqueline (ep 43), laughed out loud with Karyn Buxman (ep 37), and learned amazing things from Sascha Alexander (eps 25, and 19) and Ariel of @carpe_that__diem (eps 40 and 41… but perhaps most meaningful to me have been the episodes when longtime friends allowed me to help them share their stories. Because of my interviews with Katie Georgiou (ep 10) and Dr. Harold Kraft (ep 7), Katie’s been offered free treatment for her MS and will be here in LA receiving it by the time this writing goes live; my friend Dayna Schaaf has been my rock, and decided to join the Spoonie club with an undiagnosed condition she talks about in ep 8; and one of my oldest friends, Clare Stafford, talked about surviving breast cancer – twice – in her 30s! – in ep 44. Also – my friend and former America’s Next Top Model contestant Mercedes Shorte (ep 1) was not only my first subject on the show…but also the first interview I recorded! Having InvisiYouth founder Dominique on the show (ep 18) was also an amazing experience. Her story is…WOW! This show is the best kind of rollercoaster!

• What’s a piece of advice you’ve gained from a guest on an episode? 

A: I always ask my guests for tips, so there are a lot of great answers to this question. But I think my favorite is: be open to trying something new – start thinking outside the box. This also means – seek second opinions, ask questions, and know that there is hope. Be curious, and be prepared not only to learn from yourself – but to be surprised.

• What’s something you’ve learned from being a podcast host?

A: Not a single one of us is alone. It doesn’t matter how complicated or weird or taboo or tough your condition is – you’re not the only one out there. Even with a super rare disease. There are others like you – you just need to look for them.

• What’s some advice you’ve gotten to pass along to new podcasters?

A: Have fun. At the end of the day, this is an investment of your time and resources – so make sure you’re finding joy in it. But also: be a responsible host. Ask the tough questions. Take the reins. Dig deep. It’s your journalistic duty in a post-truth world.

• If you could set a dream episode for your show, who would be part of it? What would it cover? 

A: JAMEELA JAMIL! She’s my Spoonie hero…but also I want to be her best friend! Not only is she blazing trails because of her outspokenness, but her relatability is exactly what makes her appealing. You don’t even have to be a Spoonie to dig what she’s about! I’d want to delve into the overlapping elements of invisibility not only in her experience as a WOC with invisible illness…but also those layers in the lives of individuals she’s met since starting @i_weigh, and how they’ve expanded her perspective. And I’d want to talk about the role of empathy in the future of healthcare, and how she sees that concept developing into…something, perhaps?…more functional for both doctors and patients.

 

Headcase Podcast, hosted by Stephanie Hoffmann

Website        Apple Podcasts        Spotify        Pippa        Instagram

•  What’s your podcast’s description/all about?

A: My podcast surrounds mental health, awareness and wellness. My goal is breaks down the boundaries of this taboo subject by diving deep into the world of mental health and all that relates to it. This show establishes real and honest mental health conversation through stories and discussions straight from the people who’ve experienced them. HeadCase’s purpose is to spread awareness and end the stigma by enlightening audiences on the lack of education, information and options for those who suffer through or are directly affected by it. HeadCase is the podcast you’ve been ANXIOUSLY waiting for.

• What inspired you to make this podcast?

A: What inspired me to make this podcast initially was a concussion I suffered that unleashed many side effects from beneath the surface. Primarily anxiety and depression and it stopped my life in my tracks and to this day is something I struggle with. I wanted a place where everyone could discuss whatever it is they’re going through without judgement, fear or hesitation.

•  Favorite/A memorable episode so far?

A: One of my most memorable episodes, although all of them are unique, would have to be the episode titles Sensitive to a Fault with Hannah Blum. It was the first time I got any real understanding of Bipolar 2 disorder and a raw explanation of of her experience in a mental institution.

• What’s a piece of advice you gained from a guest on an episode?

A: I’ve learned so much from all my guests. I think the main thing I gain is that no matter how bad things may seem or get, there truly is a light at the end, even if it doesn’t shine every day, doesn’t mean you give up on yourself or your life.

•  What’s something you’ve learned as a podcast host?

A: I’ve learned what it is to truly listen, not just hear. It’s made me a more empathetic person than I already was! And ongoing, I’m learning to speak better publicly.

• What’s some advice you’ve gotten that you’d pass along to new podcast hosts?

A: I would say, try not to talk over or interrupt your guest, pace yourself so you don’t step on your own words and be calm! Let your personality shine through that microphone— (which you should never have more or less than 4 inches from your mouth.

• If you could set a dream episode for your show, who would be on it? What would it cover?

A: I have so many dream guests I’d like to talk to. Lately, I’ve been noticing how active Justin Bieber has been in the mental health world and I’d love to hear his whole story as told from a real, raw and honest place that people may not have heard yet. Other guests I always think about having on are Jay Shetty, Russell Brand, Kevin Love and Pete Davidson. The list truly goes on but I’m thankful for all the guests I get because being candidly open is extremely brave, famous or not.

 

The Women Wave, hosted by Sterling Cates and Tricia Cleppes

Website          Apple Podcasts          Spotify          Instagram

  • What’s your podcast’s description/all about?

A: The Women Wave is a multimedia creative house that produces empowered content for women. At TWW, we encourage women to authentically connect and get involved in the world around them. In addition to an online community of women and IRL events, we have a weekly podcast that comes out every Thursday that covers everything from personal experiences, to politics, pop culture, and more. Each week, you can expect a bold, inspiring, and unfiltered conversation.

  • What inspired you to make this podcast?

A: The Women Wave came to be when we realized we weren’t the only women craving authentic conversations about our experiences. As long distance best friends in constant communication (bless you, FaceTime) about our lives and the world around us, we decided to make our private conversations public, creating space for other women to be just as vulnerable and supported. With so much going on right now, we figured we couldn’t be the only ones trying to figure it all out. We were right — and the best thing happened, now we get to do it with all of YOU!

  • What’s a favorite or memorable episode so far?

A: It’s so hard to choose a favorite because every week is so incredibly different! Over the past 106+ episodes, we’ve laughed (a lot), cried (a lot), and really explored topical stories in ways we didn’t know possible. One great thing about having this platform is we get to express our civic duty and rights, like protest and organizing. When there were families being separated at the border, we had a platform to spread awareness, research, and resources in the form of an emergency minisode.

On weeks where we may be traveling or can’t cover that week’s news, we’ll pre-record episodes where we take deep dives in to 1-2 topics or answer listener questions — which gives us a rare opportunity to dig deep, discover some gems and help our audience get to know us more. Here are a couple of our favorites. Do The Work (Episode 98) and No One Asked, We Answered (Episode 96).

  • What’s a piece of advice you’ve gained from a guest on an episode?

A: We have a bi-monthly series on our website called Women Making Waves, where we feature badass women who are playing active roles in making waves in their communities (which is how we connected with Dominique and InvisiYouth!). We have learned SO MUCH from each and every woman we’ve had the privilege of interviewing. We recapped some of the highlights on Episode 96, Lessons in Boldness from Women Making Waves. To point a quote out in particular, we refer back to this one a lot from Gender Equity Now’s Executive Director, Sara Sanford: “I’ve acted out of fear and I’ve acted out of bravery. I can’t think of a single time in which I acted out of fear that I would look back on and say, “I’m so glad I was timid. I’m glad I dimmed my light.” Whatever the thing is that you fear, it still comes for you. Wouldn’t you rather it came for you knowing you were true to yourself, that you had acted with integrity? Aren’t you coming out of that fire with your head held higher? I’ve endured consequences for being bold, and I don’t regret a single one of those decisions. If a job or a relationship doesn’t thrive in the midst of your strength, it means it’s not right for you; it doesn’t have enough to offer back to you. If you act boldly, you will find the people and the work that honor your strength – but you won’t get to that place by acting out of fear.” FIRE TWEET.

• What’s something you’ve learned from being a podcast host?

A: The nature of our podcast keeps us accountable for doing the work and doing the research. Each week we challenge ourselves by keeping up with the news and what’s going on in the world around us. It can be exhausting, yes, but ultimately it fuels our curiosity and desire to spark similar dialogue in our listeners own lives. We’ve also learned that vulnerability breeds vulnerability. By being willing to come to the table as we are, we’re creating a space for others to do the same. We’ve gotten so many wonderful messages from our community members who have similar stories or who were inspired to do something by something we said – and that’s an extremely humbling and motivating feeling. That connection keeps us going!

• What’s some advice you’ve gotten that you would pass along to new podcast hosts? 

A: Start. We didn’t have it all figured out when we decided we wanted to start a podcast – we just started. This whole thing has been through so many phases (#same), and ultimately hasn’t been the most by-the-book journey, but it’s been ours and it’s been beautiful. We are all works in progress, and that includes our expressions of creativity. Aside from that, don’t allow all the blogs out there to intimidate you – you don’t need the fanciest equipment or millions of dollars behind your podcast. You don’t need sponsorships to have a platform. If you’re committed to consistency and have a desire to use your voice in this way, just do it! And yes, do your research. 😉 Go in with a vision and a why. Our vision was to make our private conversations public. Why? We believe women are craving authentic connection and reassurance that they are not alone. Despite having gone through a rebrand and the natural evolution of this project, our vision and our why has never wavered.

If you could set a dream episode for your show, who would be part of it? What would it cover?

A: We sometimes lovingly say that our podcast is just a recap our Oprah’s Super Soul Conversations, so we think we’d have to say the obvious answer here: Oprah. There would be birds chirping as we sit with her on her Maui estate’s lawn. We would talk honestly about fear, resilience, purpose and the power of being a woman.  After we finish up she’d call Gayle and Stedman and we’d all make dinner using ingredients hand-harvested from Oprah’s famous garden. Then she would turn to us and say, “You know, after our interview today you’ve convinced me: I am running for President. Oh and also, you can live here if you want.” …Oh sorry, did we go too far?

In Visibility  Today, hosted by Laura Elliot

SoundCloud     Apple Podcasts    Patreon     Twitter Podcast     Twitter for Laura

  • What’s your podcast’s description/all about?

A: In Visibility Today is a (usually!) monthly podcast featuring an extended interview between me and another disabled or chronically ill guest, covering topics ranging from politics, culture, activism, art, and everything in between. The tag line is: sharing who and what’s visible in disability, and every month (my own health allowing), I aim to provide a platform for someone with a chronic illness or disability to share the work they’re doing within and outside of the community.

• What inspired you to make this podcast?

A: Before I became disabled, I completed my MA in Broadcast Journalism, so when I became housebound in 2016 one of the things I really missed was working in a radio newsroom. I decided to use the skills I still had to provide a platform for people like me to share their work and experiences outside of the mainstream media. As well as offering that platform, it’s also been a valuable way for me to learn about disability and chronic illness as a newcomer to this community. I intended the podcast to help other people learn about disability and other topics, and to understand that life doesn’t stop with disability, but actually, I think I’ve ended up learning more than anyone from my guests!

• What is a favorite or memorable episode from your podcast so far?

A: There have been so many it’s very hard to pick! Some highlights include speaking to Eugene Grant about compiling his own library of dwarfism history (his preferred phrasing), and interviewing Gail Ward from Disabled People Against Cuts in the UK, who have been fundamental in challenging the current government on the impact of their austerity measures on disabled people. I’ve also loved talking to author Lydia Ruffles about how chronic migraine lead to her writing her first YA novel, and writer and performer Sabrina Richmond about incorporating British Sign Language into her theatrical work.

• What’s a piece of advice you’ve gained from a guest on an episode?

A: I think the best piece of advice I got was from Sabrina, who spoke very eloquently about making autobiographical work, and the importance of defining how much of yourself you’re willing to share with an audience. She said she always tried to find that balance between honesty and vulnerability, and protecting her own privacy and the important parts of herself that aren’t for public consumption, by asking: will I still feel comfortable with this three months from now, when the adrenaline has faded and the work has already been shared?

• What’s something you’ve learned from being a podcast host?

A: I’ve learnt just how many incredible disabled people there are out there doing so much awesome work! Coming from mainstream media into a much more niche, homebound format has narrowed my focus, and it’s been a privilege to learn about various topics more in-depth than I’d ever have been able to do in a newsroom. Also, the importance of letting a conversation flow naturally, and not being afraid of the mic!

• What is some advice you’ve gotten to pass along to new podcast hosts? 

A: Try not to be too performative when you’re running the show. It’s tempting to over-compensate because obviously you’re relying purely on audio, but the best podcasts feel like being invited into someone’s living room for a chat, so just relax, and enjoy the conversation as you’re recording. Oh – and make sure you actually hit “record”!

 

• If you could set a dream episode for your show, who would be part of it? What would it cover?

A: I have two dream guests that I’d love to have on, and they are Frances Ryan, a journalist at The Guardian, and Jack Monroe, an author, cookbook writer, and campaigner in the UK. I’d love to talk to Frances about working as a disabled freelance journalist with a focus on disability rights and austerity, and how she manages her health and her investigative work. And I’d love to talk to Jack about their adaptive techniques cooking and writing, and their extensive knowledge of diet and health.

Made Visible, hosted by Harper Spero

Website       Apple Podcast        Spotify        Stitcher        Overcast        Google Play

Instagram for Podcast        Twitter for Harper        Instagram for Harper

• What’s your podcast’s description/all about?

A: Made Visible is a podcast that gives a voice to people with invisible illnesses. This podcast aims to change the conversation around invisible illnesses, helping those who experience them–whether as patients, caregivers, or friends or family members–feel more seen and heard. There’s no blueprint about how to live with an invisible illness, or how to be there for someone who has one. The goal of Made Visible is to help people living with invisible illnesses feel less alone as they strive to create a “normal” life, while also creating a new awareness of how we can be sensitive and supportive to people who are navigating these conditions. We never truly know what another person is going through unless we ask, listen, and do our best to understand.

• What inspired you to make this podcast?

A: I spent the first 27 years of my life hiding my invisible illness because I felt so much shame about it, and wanted to fit in. After undergoing a major surgery in 2012 where I could no longer hide my health, I started sharing my story and health challenges with friends and family and felt like I peeled off a layer that had been protecting me. Additionally, I started writing about it and found that my story and experiences resonated with others. But, as I searched for outlets and stories that were focused on invisible illness, I felt like I couldn’t always find content I related to. As an avid podcast listener, I decided to create the content I wanted to consume in podcast form. Thus, in July 2018, Made Visible was born!

• What’s your most memorable or favorite episode so far?

A: There are so many! I don’t play favorites. An episode I enjoyed was with Jaime Walden (Episode 56) who lives with Crohn’s disease. What I loved most about Jaime was that she didn’t hold back–she shared so much of her life, her health and the real struggles she faces while managing this illness…many of which are not so fun to talk about. She brought a lot of humor into our conversation.

• What’s a piece of advice you’ve gained from a guest on an episode?

A: Letty Cottin Pogrebin (Episode 30) talked about the importance of treating people like humans, not as patients. If you’re looking to support someone who is managing an invisible condition, it’s important to identify the things they love and how you can continue to make those things part of their life. Offer to bring them their favorite meal (or just show up with it!) instead of assuming they want soup.

• What’s something you’ve learned from being a podcast host?

A: I’ve been listening to podcasts for a while and when I started this I wanted to ensure that the content did not get stale. Over time, I have worked really hard to make sure I come up with unique questions, listen intently to my guests, and create diverse content so it never becomes repetitive. I never want someone to feel the way I have with other shows and get bored and stop listening.

• What’s some advice you’ve gotten you would pass along to new podcast hosts? 

A: Screen your guests in advance. Ensure they are media trained and good storytellers. Also, if you’re going through an assistant, publicist or manager, ensure the guest you’re recording with knows the premise of the show. This seems obvious but I’ve had a guest record and then ask me what the theme of the show is.

• If you could set a dream episode for your show, who would be part of it? What would it cover?

A: I have been watching Selma Blair’s journey with multiple sclerosis over the last year and am so thrilled to see her willingness to share so much of her day-to-day challenges. It’s important for people of influence to share their stories and help others know they’re not alone. I would love to interview her and talk about the process of deciding to share, how she chooses what she shares and when, and what it’s like to be a mother living with an invisible illness that’s becoming increasingly less invisible.

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Want to know another special addition to this epic InvisiYouth Podcast MasterClass Mini Series?? It’s my selection of some of my favorite episodes of InvisiYouth Chat Sessions!! And this was TOO HARD because we love something about every episode and each wonderful guest! But here are some of my MUST-WATCH and MUST-LISTEN episode from our podcast series!

Season One, Episode 14

For forever, my favorite is our tribute episode to my friend, and one of the best cystic fibrosis activists, Claire Wineland. I was planning with Claire her guest appearance for Season One before she passed away, and I decided to switch around and create a memory episode filled with Claire’s best YouTube moments. Highlight: getting to have Claire’s mom, Melissa, as the special guest because she’s one of the kindest souls I have met. It’s been two years since Claire passed away, and still to this day, I will watch this episode and feel the love Claire was always able to bring into the room.

YouTube        Apple Podcasts        Spotify        Google Play

Season Two Episode 26

Season Two ended with a dream guest, Diversability’s CEO and founder Tiffany Yu. In the early stages of InvisiYouth Chat Sessions development, we made a wishlist of powerful women in the chronic illness and disability space we’d love to have as a guest and Tiffany was on the top of that list. Her episode has an impactful discussion on the importance of good allyship and life lessons we still get comments about from people finding our series with E26.

YouTube        Apple Podcasts        Spotify        Google Play

Season Two Episode 24

Fun Fact: This episode is our most viewed YouTube video AND most popular audio podcast! And with the Kowlessars chatting about relationships with chronic illness, I know why! Anna (founder of People Hope) and her husband Randy have a a dynamic of fun, love, and passion that makes them guests you’ll be hooked to listen to from the first minute. I had the most laughs filming with them, and every listener will share this podcast to friends, it’s so good! Also BTS: we had technical difficulties and had to re-record the episode entirely again, so I got to experience two completely different episodes with Anna and Randy!

YouTube        Apple Podcasts        Spotify        Google Play

Season One Episode 7 and Season Two Episode 25

Our only returning podcast guest of InvisiYouth Chat Sessions is also one of my greatest friends and BOTH of his episodes are podcast gems! Cystic fibrosis activist, producer, and author Travis Flores brought two completely different tones to both episodes and that diversity makes him a standout guest. The friendship with me and Travis is such fun and clear in both E7 and E25 so you feel like you’re just hanging out with some new friends!

YouTube Epi7        Apple Podcasts  Epi7      Spotify Epi7        Google Play Epi7

YouTube Epi25        Apple Podcasts  Epi25      Spotify Epi25        Google Play Epi25

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When I decided to create this Podcast MasterClass, there were a ton of series that our team immediately mentioned that they were huge fans of too. It started when I began developing the premise of InvisiYouth Chat Sessions being the vocal point of our virtual programming. I was finding all these wonderful podcasts, hosted by these talented and diverse people and I was being inspired about the show I was creating for InvisiYouth Charity that I knew could hopefully become an addition to this list of shows I love.

And now InvisiYouth’s team has created our honorable mentions of top podcast picks.

*fun fact: I’ve been a special guest on some of these shows too!

Bit Different Pod        Chronic But Iconic        What Fulfills You?        Hey, Girl

Two Disabled Dudes     Call Your Girlfriend     Sickboy     The Gurls Talk Podcast

Disabled to Enabled    Point of Pain    Gentler Pod     This is Not What I Ordered

Please give a listen to all these podcasts that I am chatting about because they are AMAZING, their hosts are BADASSES, and I am a mega fan of all of them, and feel like I grow as a podcast host because of them too. Make sure to subscribe to their series, AND SUBSCRIBE TO INVISIYOUTH CHAT SESSIONS TOO too because their shows are so much fun!  We learn when we are open-minded, curious and eager to become better people, so when you listen to podcasts, you are truly getting to become a student again, be entertained, and feel that human connection. It’s why I love podcasting, and why I love that InvisiYouth Chat Sessions gets to be the focal point of our virtual programming. Lots of love!

~Dominique, founder and executive director

Spotlight Story Program: Scarlett Aylen’s Story

Meet Scarlett Aylen

Our latest Spotlight Story comes from across the Atlantic Ocean with a fresh take on empowerment and facing the obstacles that life can throw at us. We were so excited to hear from 20-year-old university student from the United Kingdom, Scarlett Aylen, when she submitted her story. Scarlett is an example that chronic illness and health struggles affect the entire person, both physically and mentally, and she advocates each young person should be supported as an entire being.  Her inner strength feeds into her organization RCASS, helping young people and their families after a scoliosis diagnosis. You learn so much through Scarlett’s story about resilience, advocacy, and finding ways to enjoy life.

It all started when I walked into a consulting room and saw my spine, looking horrifically and severely curved on a huge screen right in front of me. I was 12 and was diagnosed with severe scoliosis. I cried and cried to the point where the consultant and nurse had to let me leave the appointment without having one. I didn’t feel like a young girl, but now I see 12-year old’s and realized why my parents were so scared for me. I spent 9 months in and out of the worst time of my life, I was depressed and didn’t speak to my family. I changed.

I hid in a thick jumper and coat at school so nobody could see my deformed back, despite it being 30°C and summer. In the months leading up to the operation, my mental health continued to deteriorate, but the waiting list was preventing me from the operation I was desperate for. After the major surgery to fix the curve in my spine, the recovery was long. It took months. I was so scared to have water on my back. I remember so vividly having a panic attack when it was time to shower for the first time since the operation. It took me months to get into a swimming pool and I would insist on covering myself up. I couldn’t do sports anymore. I used to ride, swim and do triathlons competitively but I gave everything I spent my childhood doing, up. Every time I tried to exercise there was always an excuse. But I was on the road to recovery, so it was ok.

Unfortunately, this was just the start of the problems. I thought I would just get better. Then I started to realize I couldn’t breathe. At one point, it felt like I could barely breathe at all. I also started experiencing severe anxiety on return to school and fought with panic disorder for about a year. I went to the doctors on multiple occasions and each time they told me I was just experiencing breathlessness due to anxiety. I argued and finally got a referral to a pediatrician, who allergy tested me. She said my lungs were the age of a 70-year-old but again, it was just anxiety! Through my GCSE years, I had therapy and I thought the anxiety was gone. It was just hiding. I still could not breathe. Eventually I saw a respiratory specialist who diagnosed me with restrictive lung disease and asthma.  The scan showed that one of my lungs is half the size of the other and my heart is not in the same place as everyone else’s because of this, and that ¼ of my big lung wasn’t even working due to infection.

However, having someone take me seriously was a huge relief. I had special respiratory physiotherapy and now take medication for my lungs. Being me, I was unlucky again.

The respiratory specialist had found a screw in a CT scan of my lungs that was dangerously close to my heart and sent me back to the spinal surgeon. He told me the operation wasn’t urgent, but that he had cancelled someone’s surgery (who waited a year to have it) and that he wanted to do it tomorrow. I woke up screaming in pain. My shoulders and neck have never been the same since. The surgeon couldn’t find anything wrong in a scan afterwards, so he sent me to a pain specialist. He basically said that I had no reason to be in chronic pain so off I go. I went to a specialist and got 3 medications to help with the pain. I have 16 Botox injections every 6 months when I can afford them, and it is the only thing that relaxes my neck and shoulders. The way I would describe the pain is severe, chronic and incredibly tense. They were constantly in spasm, which was excruciating and incredibly tiring.

By the end of my further education, I had missed out on 8 months of school and college due to pain, anxiety and fatigue. I was in so much pain and anxiety during my final exams, that I landed myself in the ER the day before my last ones from a tachycardia attack where my heart sat at 190 BPM for 3 hours.  Luckily, I take medication for my heart and I am symptom free most of the time, but it again took years to diagnose since the GP dismissed palpitations and a fast heart rate as being ‘anxiety’.

Nowadays, I focus on what my body needs. Recently, I discovered that the fatigue I’d been having for years, that kept getting worse was probably a neurological condition called narcolepsy, after the GP just told me it was probably anxiety, but then tried to pass it off as ME (chronic fatigue syndrome) after one appointment. I am now getting treatment for this which is exciting!

One of the perks of dealing with conditions like mine over a long period of time (over 7 years now) is that it has allowed me to learn about myself and what works for me. I understand it now.  Before, I wouldn’t let myself rest if I was about to collapse from exhaustion, but now I give my body time to recover before I start doing things again. I have friends with ME and the tips they have given me for my conditions help me as well, even though I don’t have it.

If I have, what I call a ‘pain crisis’, where my pain is worse than the average daily pain I get anyway, I have learnt to stop absolutely everything. It is hard to do that when you have a lot of goals, but it is an important step towards managing your body. After I turned 17, I started realizing I couldn’t hide from doing the things my friends could do for the rest of my life. I plucked up some courage and started doing things like get back on a horse and going to the gym.

I took a gap year and decided that it wasn’t fair on young people who had to wait for scoliosis surgery to have no support before and after the operation, so I have decided to set up my own organization to help this and called it RCASS.

I want to help young people and their parents after a diagnosis of scoliosis. The end goal is to provide more support in the future and to register as a charity to help provide young people with opportunities to recover confidence after scoliosis surgery. It is still in the starting stage, but I can’t wait to work on it properly!

I took a gap year before I went to university and decided its purpose was to ‘challenge myself to lengths I had not done before’. I went travelling alone, I went up mountains, on hikes, skiing, jumping off cliffs, surfing, volunteering and many more activities. I am incredibly proud of myself, but I must admit, the pain was still there. My biggest achievement to date is building the confidence to wear a bikini on a beach or by a pool. I never used to wear a small amount of clothes, but gradually I have worked up and now I don’t browse the shops thinking about what can hide my back, I’d rather show it!

As for my mental health, I needed the gap year and it did me the world of good. I still have some wobbly moments sometimes, and the anxiety meant I flew home 3 times on my travelling. But overall, I feel that my experiences have made me 10 times as more empathetic, understanding and positive compared to what I would have been like if nothing had ever happened to me! Another life changing moment was when I was told ‘a problem shared is a problem solved’.

It isn’t always easy when it comes to other young people but when I got to about 16 everyone started understanding and now I am so lucky to have incredibly supportive friends after I explain my problems to them, they help me with lots of things that I wouldn’t have help with if I didn’t share my story.

I tend to joke about my past now, and although it has been a harrowing journey, I know I am the person I am today from the experience.  Time has taught me how to look after myself. Although I still have problems, I know how to deal with them both in a better mental mindset and physical one too.

InvisiYouth Launches Fundraiser Campaign, InvisiYouth Give Back Challenge for December

November 25, 2019

InvisiYouth’s month-long fundraiser campaign, InvisiYouth Give Back Challenge, launches December 1st and has goals beyond just raising needed funds that will support our programs/events helping young adults with chronic illnesses and disabilities.

(Donate on our JustGiving Page or GoFundMe Page!

100% goes towards InvisiYouth’s 2020 programs!)

This is a fundraiser encouraging everyone to find the ways in their life they can donate back at any scale—where quantity per donor is NOT the priority. It is all about mobilizing young people and their support networks to be small pieces of a large fundraising goal and knowing with certainty each cent matters.

#IYGiveBackChallenge is the first fundraiser campaign built to be easy and stress-free…how amazing is it to be able to feel good AND do good during the holiday season without the hassle.

And the steps to give back are simple:

1. Find one part in your daily life this December and flip it into a mini fundraiser moment!

We’ve got lots of quick #IYGiveBackChallenge ideas here!

Make your coffee and donate that to InvisiYouth!

Collect your coins for December and make that a donation 

Donate in someone’s name as part of your holiday gift that keeps on giving!

Make those holiday parties and friend movie night hangouts super feel good and collect mini-donations from each person for InvisiYouth!

Just want to be awesome one day and drop a donation, that’s perfect!

More ideas on our website too!

2. Donate that amount (any amount, in any currency) to either of our fundraiser pages! (JustGiving or GoFundMe)

3. Donate Shout yourself! Use our #IYGiveBackChallenge certificate on our Instagram or download it here. Plus, we want to give you a shout out for your donation! So tag @invisiyouth!

4. We encourage everyone to get into the giving back spirit and challenge up to four people to also take the #IYGiveBackChallenge!

Friends, family, colleagues, loved ones, Instagram friends or your favorite celebs, influencers and athletes too! Anyone you can think of, challenge them, the more the merrier!

Our goals of $2,000 is so tangible if each person even donates the smallest amount they can and creates a way of donations for change!

100% of all donations in the #IYGiveBackChallenge will be used for InvisiYouth’s 2020 programs (virtual, resources, and leadership training opportunities) and events. Your money will be directly aiding young adults with chronic illnesses and disabilities that truly need our help to thrive and succeed in their lives.

When you donate to InvisiYouth Charity, you are changing a life for the better, and that’s a guarantee! So please, help us be able to continue our work supporting these deserving young people because we cannot do it without you.

Take the InvisiYouth Give Back Challenge, share it on social media, challenge your friends, family, followers and favorite celebrities to get philanthropic with you! What better way to end 2019 feeling good about yourself than knowing each cent you donate is impacting thousands of lives in the year ahead of us!

InvisiYouth Partners Up with Mighty Well for Another New York City Meetup

September 1, 2019 

Last month, InvisiYouth partnered up with our friends at Mighty Well for another meetup. This time it was in Midtown New York City at the Le Pain Quotidien Bryant ParkMighty Well is n athleisure company that makes medical accessory products designed to put strength, confidence and mobility back into the toolkit of spoonies and anyone else coping with ah health setback, so style and function are blended together.  This is our second year cohosting a meetup with Mighty Well, so perhaps this can be an annual alliance—what do you think?

InvisiEvents are unique for exactly all the reasons you can see above: they are fun, free, nontraditional, quirky, empowering, and philanthropic. Why not make hanging out with your friends and family an opportunity to also fundraise for charity?

Why not use your love of hanging out with friends and add a fundraiser element to it—so you pay it forward without having any hassle of developing an event from the ground up?

Why not host a hangout and meet an entire new community of awesome young adults while also fundraising?

Why not partner up with fellow nonprofits and businesses to bring empowerment and kickass joy to lots of young adults to multiple our outreach?

The answer to these questions is simple: InvisiEvents is going to international and we’re making our hangouts and our style of events regular throughout the year! But to do this…we need your help!

Many of you told us which cities you want InvisiYouth to come to next, and we need all your support to bring this to life! We need YOU to help be our cohosts, help us come to your cities and make the events a reality! Whether a brunch, yoga class, cooking day, movie night, sporting activity, painting class, coffee house meetup, wine tasting, or something totally different, we want to know what venues, what locations we can go to next.

If you want to help us bring these events to life, it’s simple—contact us on our website, or DM us on social media by FacebookTwitter or Instagram! We always answer and we want you to join the InvisiYouth family!