Spotlight Story Program: Meet Asia-Jorden Alexander-Smith

Even one simple tweet can add such a level of flavor and dimension in your life. That’s something that we learned from our latest Spotlight Story Program feature writer, British graphic designer, Asia-Jorden Alexander-Smith when we saw her viral tweet about ASOS using a model with a hearing aid on their store. Since then, Asia continues to use her voice sharing her journey living with Usher Syndrome and raising awareness for the hearing loss and visual impairment communities, while also just living her life as an awesome young adult. In her feature, Asia shares her health journey and how she conquers her world by finding what makes her confident leading with honesty. Plus, learn how surrounding yourself with a dynamic support network makes you a legend and Asia’s five pieces of life advice as a self-confessed non-expert. We are here for it!

Hi! There’s a very good chance you have no idea who I am, so let me introduce myself – My name’s Asia. I’m a 23 year old graphic designer from the lovely county of South Yorkshire, England. I have two older brothers, 11 tattoos, and a cat called Harvey. Oh, and a condition called Usher Syndrome.

Back in 1998, newborn hearing checks didn’t happen so it wasn’t until my 7-month check that doctors noticed something was awry with my hearing. I failed my follow-up auditory brainstem response test, leading to the diagnosis of a severe bilateral sensorineural hearing loss. I was given two hearing aids at 11 months old and pretty much sent on my merry way to get on with my life as the only deaf person in my family.

Until I was 19, things were relatively straight-forward with my health – routine hospital appointments, hearing tests, new ear-molds, rinse and repeat. It was by no means easy, but it was a level of stability that I’d adapted to and accepted as a part of my life, a huge factor of the very foundation of who “Asia” was.

One weekend, I thought I’d got some dust in my eyes as I started to notice a bit of shadowing – almost like a cobweb – in the centre of my vision in my right eye. After leaving it for a few days, I was sent to A&E by my doctor to get it checked out. I was eventually dismissed by an A&E doctor and told that I had posterior vitreous detachment (PVD), which apparently was nothing to worry about and I should only be concerned if the floaters seemed to suddenly get worse.

Which, of course, they did.

I can’t lie, the testing process was grim. I’m a person who had never had eye drops before in my life and suddenly I was having ten sets of various eye drops within the space of a week and a half. I’m claustrophobic, and I had to stick my head in a little box and stare at a bunch of flashing lights whilst having electrodes literally touching my eyeballs so the doctor could measure my brain activity (an electroretinogram and visual field test). I felt like some kind of lab rat being poked and prodded and honestly, it sucked.

After countless trips back and forth to various hospitals to see various ophthalmologists, I was diagnosed with Usher Syndrome Type 2, a genetic disorder characterised by deafness accompanied by Retinitis Pigmentosa. RP is a progressive eye condition which causes night-blindness, tunnel vision and, in advanced cases, loss of central and colour vision.

I remember being sat in the consultation room with my mum and my oldest brother and my heart just broke. I was told I’d never be able to drive because the minimum peripheral vision requirement was 120°. I had 10° of peripheral vision left, and I hadn’t even realised I was losing it.

I was 19 years old and forced to grow up so much faster than everybody else around me. For my whole life, I’d chased a career in graphic design and now I was being handed a visual impairment certificate, which felt very much like my dream career was over before it started. I thought I’d learned how to deal with my deafness but this? This was completely unfamiliar territory for me.

It left me questioning everything I thought I had figured out, my deafness included. I was starting to notice that I was now an adult, sitting in hearing clinics where I was the youngest person by decades, being seen by audiologists who didn’t seem to know how to deal with me with the same compassion I’d experienced in the children’s clinics.

However, as difficult and life-changing as the diagnosis was, it also came with a strange sense of relief and clarity; I wasn’t just clumsy, I literally couldn’t see the things I was bumping into because they were outside my field of vision. I wasn’t just a bit of a wuss for being scared of the dark; part of RP is night-blindness and let me tell you, being unable to see or hear in the dark can be pretty scary.

At some point after my diagnosis, I completely changed my mindset. I truly wish I could remember the exact moment but all I recall is a newfound appreciation for my life, the experiences I was having and the people around me.

My family and friends were so incredibly loving and supportive. I don’t think I’d be the person I am today if I didn’t have the amazing support network that I have around me. The support and help I have from those who love me mean that I still love going to gigs, and on days or nights out.

I go to the cinema. I go on holidays to places I’ve never been, because I know that not only is there someone there to support me along the way, but I’m confident enough in myself to ask for help if something isn’t accessible enough for me.

That support network only grew as I delved more into the world of social media. I’d never really been part of a deaf community growing up, so when I posted a little tweet about a deaf ASOS model that I’d noticed, I definitely didn’t expect the incredible reaction it received.

People were messaging me to thank me for bringing it to their attention and for increasing public awareness. People were coming to me with self-esteem and confidence issues around their own disabilities and asking for advice.

photo from info.trendwatching website and copyright belongs to them and original photo from ASOS

Now, I definitely wouldn’t call myself an expert by any stretch of the imagination but just knowing that I potentially helped even one or two people within their own lives as disabled individuals? It’s truly humbling.

There are so many amazing little communities on Facebook, Instagram, Twitter – whatever your social platform of choice is. You might have the most supportive family and friends in the world but sometimes you need people who know how it feels to be in your position.

While we’re all different, even with an identical diagnosis, there are countless people who just… understand.

I’m now an auntie to six nieces and nephews, the youngest of whom has the same hearing loss as me. I want him to grow up feeling supported and completely unstoppable, regardless of his hearing.

So, my advice as a self-confessed non-expert?

  1. Stand your ground. A doctor can tell you technical stuff from a medical perspective but ultimately? They’ve read about it. You’re living it.
  2. Surround yourself with supportive people. You are never alone. I can’t promise that you won’t encounter people who don’t understand, or are perhaps just downright ignorant, but for every one ignorant individual, there are countless others who want to support and empower you.
  3. Be honest. Be honest with your doctors if you feel like something isn’t right, or if you don’t understand all the technical jargon that’s being hurled your way. Be honest with your friends or family if you’re just too drained to do that thing you were supposed to do. Be honest with yourself and those around you if you need a bit of help and support.
  4. If you need something, ask. Don’t feel bad about asking for something to be made more accessible for you. You’re entitled to the same experience and level of service as anybody else!
  5. Be proud. There’s only one of you in the world and that makes you more special than you’ll ever know.

Who am I today?

My name is Asia, and I’m 23 years old. I’m still a Graphic Designer. I laugh at things that I probably shouldn’t. I cry, a lot (usually at films!). I’m a resilient, occasionally funny, incredibly sarcastic young woman. I have Usher Syndrome Type 2, and you best believe I’m proud.

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 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 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.*