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.

And the Total is in! InvisiYouth’s Charity Teams for England’s Superhero Disability Triathlon Raised a Total of…

By Dominique Viel

September 8, 2017

After months of fundraising, campaigning with family and friends and online through our GoFundMe Page, InvisiYouth’s Charity Teams that participated in England’s first inclusive disability adaptive triathlon have ended their fundraisers.

We received donations online and donations in the mail and on our website’s donate page too! We are happy to announce that our Charity Teams fundraised a grand total of $1,000!

All these funds are going directly into building InvisiYouth’s new illness management tools and programs that will give back to so many teens and young adults with chronic illnesses.

These tools and programs will be unique, showing a wide older youth illness and disability community all the life hacks and tips to navigate life while living with illness, or as we call it, the non-medical side to medial experiences. 100% these donations are going to help build them!

Each of our teams competed in three sports at the Olympic Dorney Lake in Windsor, England: swimming, running and cycling.  Different teams of people with disabilities and chronic illnesses came out from across the country, along with their supporters of friends and family (and sometimes dogs too), all who worked together to complete these events.

InvisiYouth Charity loves supporting disability sports and the way adaptive athletics can play such a critical role in the life of a teen and young adult living with chronic illness and disability.

It is a way to get them back into a routine, physical therapy, and teamwork mentality. It is a powerful force that needs more attention and support group to it!

Our teams consisted of lifelong friends, and competitive athletes in university, supporting their friend with a rare disease. Another team was filled with family members and siblings.

And we even had a married couple that are passionate physiotherapists and exercise therapists who want to work with InvisiYouth to train and bring adaptive sports to more older youth across England.

One InvisiYouth Team member, 21-year-old university student Katy Baker, felt the benefits of being part of Superhero Series Triathlon.

“[The Superhero Tri] proved that people like me, with chronic illness, can take part in sports with their family and friends,” said Baker. 

Watching our teams cross the finish line at the Superhero Triathlon was unlike anything we could have experienced. So much joy and excitement from accomplishing their goal, and watching all the other youth, families, friends and supporters crossing the finish line and earning their medal.

It is clear to say that anyone can get so motivated watching such a strong group of people competing in all types of sport!

Now…InvisiYouth Charity is happy to announce that we will also be part of the next Superhero Series event, the Winter WonderWheels on December 3rd at Dorney Lake once again!  This will be a massively festive disability adaptive sporting event where anyone can cycle, walk, run, push/be pushed around Dorney Lake for different distance challenges: 1km, 5km or 10km!

AND WE NEED YOU TO JOIN OUR TEAMS!

We want to have a full set of teams so if you want to compete with friends and family FOR FREE, contact us, and we will sign you up for a fun and festive event to end 2017! 

Spotlight Story Program: Devri Velazquez’s Story

Meet Devri Velazquez

Our latest Spotlight Story comes from someone we’ve adored for over a year now.  She’s not only got one of the best Instagram aesthetics we’ve ever seen, but she also has found a real niche for combining artistry with health activism. It is beauty and wellness editor and writer, Devri Velazquez.  Whether she is in Texas, New York City (where our founder, Dominique got to meet her), or Chicago, Devri has maintained her constant push for awareness on the life of a becoming an adult while living with chronic illness, specifically when you’re becoming your own person with invisible illness.

At 20 years old, Devri was diagnosed with a rare autoimmune vascular disease called Takayasu’s Disease. This is “a rare type of vasculitis, a group of disorders that cause blood vessel inflammation. In Takayasu’s, the inflammation damages the aorta—the large artery that carries blood from your heart to the rest of your body—and its main branches. For Devri, it took a series of strange flu-like symptoms and within a few weeks, her diagnosis was found.

Like thousands of the InvisiYouth community, Devri was diagnosed as a young adult, and that is a time in life when you are still discovering so much of who you are, and where you’d like your life to go.

I was 20 when I was diagnosed, so I feel like I had to grow up and mature soon than a lot of people I knew,” Devri said. “I had to quit taking certain risks that young people around me weren’t anywhere close to stopping. I take my self-care seriously, as my life depends on setting healthy boundaries.”

This is an experience that so many older youth have to deal with when maintaining their friendships while taking care of their health needs.

Self-care needs to be a requirement when you’re living with chronic illness instead of just a personal motivator.

Devri’s health journey has absolutely not only shaped the way she lives her daily life, but also how she does her work as a writer and editor on beauty and wellness, which everyone can experience on her website.  “I live and breathe survival everyday, in the places I go and the people I meet,” she said. “This is my lifestyle, learning everyday how to cope with constant pain that fluctuates by the hour. I pour my heart and passion into everything I do because I try not to take a single moment for granted.

Living with chronic illness takes so much daily energy, so when you’re able to achieve your goals, there is an extra large dose of enjoyment that can be felt. Like Devri points out, it completely alters the way you adapt to each and every day based on how your body is feeling and what you are capable of doing. And while that could be a focus of negativity at the challenges life with chronic illness presents, Devri is also able to see how her diagnosis has also given her new perspectives on life.

I always knew I was strong, but this has made me feel unbreakable. Nothing on this Earth and no person’s words or actions could ever hurt me as much as my body does on a daily basis, so I have learned to be more open-minded to a lot of things and not take certain situations as seriously. Everything is temporary, nothing is permanent, so relish the good moments, and know that the bad ones will pass.

There is so much to get empowered with from Devri’s mentality on her health journey. She’s right: no external factors in life can be as damaging as chronic illness is to your health, so you are actually a lot stronger than you think. Devri makes such a fantastic point: when you are having bad health days, you need to remember everything is temporary and with inner strength and willpower, you can to push those bad health days.

This is something we definitely get to experience through Devri’s social media activism on her Instagram account. Another trait of Devri’s that we all adore at InvisiYouth Charity is her complete vulnerability and belief that by sharing her medical journey, she can not only help others but also learn and grow herself.

Vulnerability is something that has help me accept and embrace the illness that my body carries,” Devri said. “I don’t feel defined by it, but it’s a part of my story now, and I’m not ashamed. I’m actually pretty proud of how well I carry this burden. Being open to your community—family, friends, colleagues—is so important, for your own mental health as well as their understanding and compassion in your journey.

What Devri touches on a couple of critical factors every young adult with chronic illness needs to know.  First, is the understanding that we are never defined by our illnesses or disability, but rather they are part of our description. Our health is not who we are, but rather it is part of the way we view our life and world around us, and that is not anything we should be ashamed of.

Second, Devri mentions something InvisiYouth always promotes, and that is the fact that a support network is critical to our daily success in life. Our family, friends and coworkers/classmates, they are all the people that help us get through the bad days, and celebrate the good ones.

This amazing young woman is filled with knowledge, realness and motivation. Not to mention, some of the best writing and photography we ever see! So when we asked Devri what her main message in life for other with chronic illness would be, it is no surprise that Devri would give the best.

Be your biggest advocate,” Devri said. “Learn how to say ‘no’ with confidence. If something doesn’t feel right—an interaction with another person, an environment, a job—it is okay to walk away from it. Do what your gut instinct tells you to do, just trust it with everything and then respond accordingly. That’s your mind, body and soul aligning to work in the favor of your higher self.”

When You’ve Got Health Hindsight: My 10-Year Anniversary with Chronic Illness

December 30, 2018

Well hello again, long time, no blog! It has clearly been a while since my last founder’s blog, but that’s just because InvisiYouth Charity has been keeping me so damn busy. (*and if you’ve been keeping up with InvisiYouth, you’ve gotten to know the reason for that is our new video podcast series, InvisiYouth Chat Sessions, which I am the hostwhich will be continuing throughout 2019*)

So, let’s get real for a minute.

One thing I’m a firm believer in is to always celebrate your small victories, and especially while you live with chronic illness/disability. You should be proud of all you achieve, regardless of the scale. But one of our volunteers reminded me of a milestone I just reached—10 years since the injury that caused the snowball of chronic illness into my life.

I’m aware it may see odd to celebrate my chronic illnesses. And yes, they really did take my life from me while my illnesses were a daily torture, but living with health struggles has also given me a life, a new normality, that I am incredibly proud of. While that’s my optimism trying to stay in focus, I refuse to stay in a mindset of resentment for my life.

As a resident “oldie” of my illness for a decade, I wanted to share my hindsight of life with chronic illnesses and the top 10 things I’ve learned after these 10 years:

#1 Diagnosis Won’t Be a Magic Wand, But It Sure Feels Nice

This is probably one of the biggest things I’ve gained hindsight on, while also being the most controversial.  It took me years to get proper diagnosis, years with mistreatment that could have improved my now-quality of life, but there’s something anyone that reads my work will notice. I rarely write down my diagnoses, and there’s a reason. Still to this day, I have had diagnoses given to me and taken away, some putting “undiagnosed” in front new diagnoses in my medical charts while others were certain. I used to put so much pressure on getting the name, getting the diagnosis and THEN I would be able to go through recovery and my new way of living. I wanted some claim of community for what I experienced. But even when I got one, it didn’t change much for me.  I still heard from doctors “well, this isn’t an illness we can cure, so we can just help you cope with it.”  The longer I lived without diagnosis, the longer I realized that it would not ‘fix’ what I was experiencing in my daily life.  Now yes, I am very aware some illnesses have amazing treatment which you get from a proper diagnosis, and that a diagnosis can really validate the patient experience because it allows them to belong and justify their health struggles. But for so many, the diagnosis isn’t the “cure it” pill, but rather the name we get to identify with. In hindsight, I learned that a diagnosis was less of a magic wand, and more of an identity helper and validation tool. I know I relate to a few different chronic illness communities, and my doctors are doing all they can to help with my health’s symptomatic issues, so a word doesn’t hold as much weight to me anymore.

#2 Celebrate the Small Daily Wins, Not Your “Literal” Falls

So often, we focus on what our bodies limit us from doing, what our chronic illnesses have taken away from our lives.  And that Negative-Nancy mindset can do a lot of damage on your emotional wellbeing when all your mental energy is focused on what goes wrong in your day and your health. When one thing goes wrong, it can feel like a domino-effect, or in my case, my own literal falls (since that tends to happen a lot). But when you’ve lived with a chronic illness for years, you gain a retrospective mindset because you’re able to look back on the periods of bad and good health. It makes you realize that if you celebrated those wins, all those days—or even hours—of stable, good health, then you’d be able to feel achievement and pride.

You’d be able to realize the focus of your energy is better served on those good moments, instead of all the setbacks and bad days.  I remember hearing the notion “every day may not be a great day, but you can find something great in each day” and that was what I began to live by a few years into my health journey.  Even if the best thing that happened was that I got out of bed, it was at least one thing I did well that day. When I gave full over-the-top celebration on each of my little wins with my health, it made my mentality more positive. It would start to feel oddly annoying when I had health setbacks because I wasn’t focused on the bad it caused in my life for most each year. The goal was to never give my chronic illnesses more power than they already had, so daily mini-winning parties for me.

#3 Become Your Best Researcher, Advocate and Nurse (knowledge=EMpowerED)

Knowledge is power. You need to be able to fight for your rights, for what you need to best help your life with health struggles.  So much was bounced over me, especially when I was a teenager and still a minor in the eyes of the medical community. That may have been the case, but it was still my body, my health, and my life.  I was lucky…my mom is an incredible nurse and has instilled in me the idea that no one will be a better advocate than YOU, so ask all the questions, inquire and research anything that may be done for you, and always get a second opinion on major medical decisions. I was taught how to advocate for my medical needs, how to research on the treatment options, to ask accurate questions, and have intelligent discussions with my doctors.  But this is not something everyone knows right when their health declines, it’s a trait to learn and sharpen.  With hindsight, I know that my health deserved my research and support to improve. I hear from lots of young adults that work with InvisiYouth “I’m the best researcher and nurse for my chronic illnesses, because I know my health and life better than anyone.”

#4 Reminiscing About the Past Can Hurt Sometimes

We can always learn from our past, but when you have a specific marker that defines “before I got sick” and “after I got injured” your past can feel bittersweet. I used to always focus on my past and feel like I wasn’t progressing enough with my health, that my chronic illnesses had done so much damage to my life.  And in a way, that could be true. The dream of playing tennis competitively on the pro-circuit died, my social network diminished, and my physical health deteriorated. But it didn’t mean I wasn’t still living my life or I wasn’t proud of the life I was building. So, when I constantly was looking at what my illnesses had taken from me, I was damaging my emotional wellbeing, and that began to hurt. My past with pristine health is something I love, and now I look at it with a great deal of fondness. But the way I’ve handled it is to look at it in those two separate parts: the before and after. If I stay in a mindset of “what ifs” then I lose my positivity, and that is not something I am willing to do. I have learned over the years since my injury, I have learned to have respect for all the years of my life, and to never feel bad or ashamed of my illnesses. By doing that, I don’t focus on what my past looked like, but rather how I have strengthened into the woman I am, how I’ve become more empathic and how I have been able to thrive in my life. I focus on the now, while giving importance to the past and future when it relates to my memories and my dreams, or my medical history, of course!

#5 Let Yourself WallowBut You Only Get One Hour

People have this ideal notion that you’ve got to be happy all the time. That if you feel sadness as a direct effect of your chronic illness/disability, you are not fighting hard enough for your health. I started to feel like I needed to be positive, to always find the goodness in my struggles, because people were “inspired” by my inner fight and “motivated” by my positive outlook.  And while that is true, that is because I let myself grieve my old life and feel for the literal pain and discomfort I have each day.  I can be strong and positive because I know when to let myself feel bad.  With a decade of chronic illness-life under my belt, I can see it was a great decision to let myself wallow for all my chronic illnesses have pained me. But what I learned is now the advice I give: allow yourself time to wallow, but make sure it only maxs out at one hour. I give myself this time limit for a reason.  If I let myself continue to feel bad about my health struggles, it will fester and to climb out of that depressive dark hole is a huge challenge. But you should be allowed to experience all the emotions of life with health struggles. You are a human being and that spectrum of emotions deserves to be felt. It is something that has worked so well for me because I allow myself to feel all the sadness and mourning and pain that is physically tortuous on my health, but I never let it overtake me.  Sit in your emotions, but know you are in just as much control of your life as your chronic illness/disability is of your physical health. When I realized my own strength, but also allowed myself to feel bad, it allowed that positive mindset to shine, so let that positive focus to thrive be your superior emotion.

#6 Be Fearless to Help Yourself in Public. You Won’t See those Judgy Strangers Again

To this day, my friends will say they know the minimum about my health struggles—many of them not even knowing the extent till they came to InvisiYouth fundraisers or my public speaking engagements. But that decision was because I was always a private person, and never felt the details needed to be shared.  I relied on the invisible nature of my chronic illnesses so it would never be the first thing people noticed about me. But when my symptoms and health struggles expanded into the physical, everyone would notice, feel pity, or ask prying questions. After a couple years of worrying about what others thought, I spoke with my mom and she got real with me. “Why are you worrying about people’s opinions? You never see them again, and it’s just stressing you out unnecessarily.” I flipped a switch and stopped caring about the wandering eyes and whispered comments. We’ve got lots to worry about with chronic illness, so worrying about what other people are judging us for when they pass by should NOT be on the list. They are strangers and not substance to what makes you who you are. And let’s get real…even I fall victim to worrying about what others think on occasion.

Recently, I went into NYC for a brunch with this lovely British blogger while she, her older brother and her boyfriend were celebrating her brother’s birthday. At that time, I had to use a cane and on my commute, I used it and got lots of stares that it didn’t faze me. But the moment I got to the restaurant, I put the cane away to make sure they did not know my medical status. I hid the cane in my bag, suffered the few steps to our table and back outside without these three new friends knowing anything. And the second I was out of sight, I grabbed my cane. Even I have moments of self-doubt, but I don’t let them define me. I could have used my cane in front of them (her brother has one of the same chronic illnesses I do) but for that 20% of my day, I concealed my reality. That is okay…because 80% is greater than 20% and I made it a point to use my cane for all my meetings, family gatherings and shopping trips in the days after. Because I am fearlessly confident with my chronic illnesses, and moments don’t define a life!

#7 Even in the Hard Days, Just Try to Laugh Because It Helps You Cope

With InvisiYouth and in my daily life, I firmly believe that laughter is the best medicine. For me, I have truly seen the way my humor, or blunt sarcasm, has helped me cope with my chronic illnesses. When things get bad medically and you’re told your limitations, I found humor was not just a cushion from my harsh reality, but a way I could look at life.  Humor supports your emotions. And sometimes with all life can throw at you when you’re living with chronic illness, you just want to laugh so you don’t cry. But I also view laughter not just as literal laughing at my medical problems, but experiencing humorous moments too! When I wasn’t as mobile or active in my past, I would find TV shows, YouTube channels or movies that would make me laugh.  Even if it was as basic as TV show review podcasts, if it got me to laugh while my health struggles were tragic, then all was being done well.  Sometimes we need to take our chronic illnesses/ disability seriously, focus on how our bodies can manage hour-by-hour, handle new treatments or hospital stays. The need for humor in our lives should to be prominent too. How else can you handle diagnosis, setbacks and side effects unless you laugh at your bad days? In hindsight, I can easily say my dark humor is one of the largest factors that got me through my lowest lows, and got me to the stage of my new normal ten years later!

#8 Body Positivity ≠ 24/7 Body Confidence

It used to feel like such a challenge to remain confident about my body for a couple reasons. Firstly, I have a distinct “pre-illness” life I can remember before the injury. And I had a competitive athlete’s teenager physique, so there had to be a deep acceptance my body may never look that way again. Secondly, my health struggles are physically taxing, so I go from living with an invisible illness to an illness that morphed, damaged and scarred parts of my body. It’s literally painful to use my entire left side, and even though a decade into it, I’ve learned how to live this new normality with quality, it means I “workout to be in shape” more uniquely than most. But the truest way I’ve gained confidence with my body is finding an appreciation that it does work for me. I’m grateful when I can climb a flight of stairs because I remember when that wasn’t possible. I am the only one that must live in my skin, so if I’m not going to find my body beautiful, it won’t matter if anyone else does. So, I have learned over these 10 years to find confidence in the functional body I have to work with, instead of desperately desiring more toned legs or smaller hips and a slimmer face. And now, I have such a respect for what this body of mine is capable of, the battle scars I find sexy and the imperfections that make me the woman I am. This body has fought my chronic illnesses with me, and that helps with my body positive mindset.

#9 Ask for Help When You Need it and That Will Make You Stronger

How I wish I accepted this earlier! When I was in the early stages of health struggles, I hated asking for help. It felt like a defeat or failure. Like my hours of physical therapy, focus on treatments and doctor visits hadn’t worked and I wasn’t doing enough. But what took me years to realize was a simple fact: Even my friends without chronic illness/disability needed to ask for help at times. Now granted, my requests and needs are a bit more major and frequent, but looking back, I made my daily life harder than necessary to live without asking for help. I physically struggled walking and interacting in classes because I didn’t want anyone to know it was hard for me.

I strained my limitations to meet deadlines, which caused medical setbacks that left me weeks to recover.  But asking for help is not a sign of weakness, but rather, it is a sign of strength. You are so connected with your medical needs that you are willing to gain support to achieve goals. That makes you stronger than anyone because you know what your goals are and have passion to get things done, and those are signs of an independent and successful person. I started to become less afraid of saying “Can you help me?” or “Do you know how to adapt this to what I can do?” Word of advice: ask for help because you want to live your life with purpose, and while it’s totally normal to feel like you’re bothering people, realize each supporter will make you stronger.

#10 Don’t Fake Smile to Pacify Others. YOU are the Only One Living This Life

I could not have picked a better piece of reflection on my ten years of chronic illness life than this one. As I began to live my life with chronic illness longer and longer, my health became my identifier. I was no longer just Dominique, but the ‘sick’ friend. I wasn’t part of the conversation, but the full medical dictionary to the questions thrown at me. And the more I interacted with “healthy/able-bodied” people, the more I ‘put on’ a happy face. I felt guilty if other people knew how bad things were medically because it felt like they were going to start pitying me more too. I pacified others constantly being “the happy, strong girl with health struggles” who never complained and always said “it’s okay.” But the only person that it was affecting was me.  It was me who had to put extra energy into “feeling as healthy as I looked” and that wasn’t fair. I learned since I was the one person that had to live inside this body all year-round, I had to find ways to adapt to it.  And if my illness struggles bothered people, if my realness was too much, then that had to be okay, and they were not the right people to have in my life. Don’t hide how you are feeling from other people. Life isn’t perfect, it is multi-faceted and messy at times, and don’t make everyone around you comfortable when you are not. Live your life the way you want to live it. And the people that love and respect you, the people that are the most compassionate are the same people that will stick around during all your “faces of emotions” and will open their minds and hearts to empathize with your experiences.

When you were not born with a disability or chronic illness, 10 years of health struggles is a long time.  It takes up such a part of way you live and view the world and yourself.  And that lets you take a step back, and learn and appreciate all you’ve experienced. Dig deep and you will be proud of the thriving life you make for yourself with all its medical quirks and adaptations, trust me!

~Dominique

Spotlight Story Program: Rachel Mayo’s Story

Meet Rachel Mayo

As a university freshman, Rachel was diagnosed with Type 1 Diabetes, and it changed her way of way. But Rachel decided to take her new diagnosis and not just better her life, but motivate others with T1D to do the same. And she’s been doing that across the United States ever since. Plus…we’re thrilled Rachel will keep working with InvisiYouth as 2018 continues.

I grew up full of energy, always going from one thing to the next, without a need to hit the “slow down” button.

As a freshman in college, when it started to require more and more energy to do basic things, like walk to class, sit through class, even, I began to worry a little. Why did I need a three-hour nap after my 50-minute English class, when just months before, I was fine getting only 50 minutes of sleep every night?

“Worried” probably isn’t even the right word. I just noticed the difference. Since my mom worked for a general physician, I decided to get a general check-up. I figured my hormones were just out of whack, and as soon as I was relieved of the stress of my semester and moved back home for the summer, I would return to normal.

It’s no surprise that was not the cure for whatever was wrong with me. (That would make for an awfully boring story, don’t you think?) The day after my last final of my freshman year, I went to the doctor, and was told that if what they suspected was right, that there was no cure for whatever was wrong with me.

The next day, at 7:15 am, I went to see an endocrinologist, they drew blood, and after several anxiety-filled minutes of waiting, It was confirmed. I had Type 1 Diabetes (T1D).

There is no cure.

I would have to take insulin for the rest of my life.

I was mostly shocked.

Not necessarily angry, but I was sad. Confused. Full of questions. But for the most part, I was okay.

Three days later, I was at the mall with my mom and sister, and we had put our shopping on hold to refuel. (Eat lunch.)

At the food court, over my chicken sandwich and the Diet Coke I was still trying to learn to love, I broke down. I’m talking crocodile tears pouring down my face. I had every emotion running through my veins at that moment and I felt completely out of control.

That’s when I decided that the best way for me to deal with this disease would be to help other people deal with this disease. I had no idea what that looked like at the time, as I still had no idea how to handle my diagnosis. But I knew I could tackle it, and I knew I wanted to use it to help others.

Fast forward and I know what that looks like now. I have spent the last year traveling and speaking to different groups with T1D around the world, helping them to navigate this disease with a positive spirit.

I use social media to share pictures and videos of my life with T1D. I share my victories, my frustrations, and try my hardest to let others with T1D know they are not alone in what they go through.

I also love to educate those without T1D about the difficulties of living with this disease. Since T1D is an invisible illness, it is easy for others to overlook the constant inner battle we fight every day.

While this disease does not define me, it is a very big part of me, and has helped shape me into the person I am today. And if I may be so frank, I really like the person I am today. The person I am today is brave, even when it’s frightening, is adventurous, even when it takes work, and is gracious, even with herself.

But it took work to get there. What has helped me the most is using my story to help others. It is so therapeutic to lay down all of my battle scars for others to see and realize that they have friends who are in the trenches with them.

The community of people I have surrounded myself with has been crucial. I love getting on twitter and conversing with my #DOC (Diabetes Online Community) friends.

It’s like walking into my own special little T1D world where everyone is willing to give you advice when you need it, or just let you vent when you don’t. It’s not weird when I say “my blood sugar got so low my tongue went numb” or “I got a unicorn today!”

My T1D community has truly been life changing for me.

I don’t want it to sound like I have it all figured out and I am completely okay. I’m not. I get burned out. I get angry. I cry so hard I start to hyperventilate.

But that is okay. I have permission to do that, and once I figured that out, it got easier for me to get through those times. It’s okay to feel those things! But it’s not a healthy spot to set up camp.

What I want, more than anything, is for people with chronic illnesses, to understand that they can do anything. Absolutely anything. And YES it might be difficult, but it is so very worth it.

This past year alone I went skydiving, ran a half-marathon, visited 24 states, and five countries including UAE, Mexico, and three countries in Africa.

“I could never do that,” is what I heard from many of my T1D friends after every new adventure. It breaks my heart every time I hear that.

YES YOU CAN! There’s a strategy for everything, and there is nothing this disease can prevent you from doing.

Find a community that lifts you up. Get rid of the negative people, words, and elements in your life. Take baby steps. Look at yourself in the mirror and tell yourself how brave you are. Tell yourself you can do anything. And if you still doubt yourself, find me, and I will tell you.

You can do anything. I believe in you.

The Invisible Illness Chronicles: It Can Be Exhausting to Feel Like You Need To Act Healthy When You Don’t Feel Healthy

October 17th 2017

I constantly get questions about the hacks to living with chronic illness (I mean, that’s what InvisiYouth Charity’s mission in life is all about). Those questions double when it comes to life with an invisible illness. It only seemed appropriate that with part of my monthly blog I would wrote some blogs on topics surrounding invisible illness.

At InvisiYouth, we constantly promote the vitally-needed change of inclusivity on all chronic illnesses. To treat physical health and mental health exactly the same. To show equal support and aid regardless of visibility. To note that invisible illnesses are note just of the mind, but also of the body too.  So…to honor if you will, the fact that I live with one foot in both the visible and invisible physical health struggles, I’ll be occasionally posting articles on the unseen struggles. These are appropriately titled “The Invisible Illness Chronicles.”

The biggest struggles living with invisible illness (besides the actual illness itself, of course) is how you can look so healthy and feel so horrible. It can be like you’re living in a sound proof booth without the mic on, everyone can see you, but no one can hear what’s going on. For myself, it’s this weird concept of dealing with all these medical symptoms affecting my nervous system, muscles and vascular system but no one can truly see the damage it takes on my body at all times.

So when my life has to involve the outside world, specially those not in my close inner circle, I feel like I have to put up the mask, to adapt and get through my schedule for the day. I go into business meetings, and conference calls with potential advertisers and Skype calls with older youth health advocates and subconsciously, I put up a front as the “healthy nonprofit owner” because that’s what I know what I look like.  Sometimes I’m driving to meetings with slippers and sunglasses, isotoner braces on my ankle, hand and knee, but the second I park my car, I have to take all that off, strap on heels, and put on the boss lady smile to power through meetings.

Now I say “I have to” like it’s an obligation, but this is a decision I make out of societal structure if I’m honest.  I look completely healthy on some days, but anatomically, my RSD and connective tissue does not reflect that at all.  I am living with a chronic illness that I have to adapt my entire way of life around it, but the people who do not know me would not know that because I’ve had nine years to master a “new normal” way at life.

Truly, it is exhausting to act like I am healthy, to walk, sit, talk, and be the healthy person my physical body makes everyone think I am.  But also, it is equally exhausting to have to explain to every single new person that I meet what my medical situation truly is, to tell them about my chronic illness.  So I have make a decision: should I be exhausted by having to try to explain my health to people who I’m just meeting, or be exhausted by acting as healthy as I look?

I choose the later.

When you are living with an invisible illness, it can be really hard to be given any true empathy because no one can gage your medical situation by looking at you.  No one that is not a family member, sibling, caregiver, boyfriend/girlfriend, or friend knows about the health struggles you live with on a minute by minute basis, so they honesty think everything is completely fine with you.  It becomes and ‘all on you’ situation because the world will not automatically feel for your chronic illness because it cannot see it.

You need to dig deep in yourself, find strength and sympathy in yourself for your own journey with your illness.  Find comfort in those around the world that are also living with your invisible illness that can relate to your truth.

It’s a two-fold community you need:  get your supporters who can build you up like family and friends that are by your side because they love you, and get others in your life living the same journey of invisible illness that relate to you.

That is why I make the conscious decision to put on the mask when I need to be the healthy nonprofit owner that my physical body says I am on some days, to walk into meetings with sponsors or fellow charity owners and I will meet with them for hours of work, getting back into the office completely exhausted and dealing with symptoms and side effects for hours of recovery.

I repeat, it is so beyond exhausting to act as healthy as I look from both a medical standpoint and mental standpoint because my entire body physically will hurt from the trauma I put onto it to “act healthy” while I also put myself under stress from people just not relating to the situations I am going through.

But there is a bright side to all of this.  When I get back to my office, I’m on a mental rush of all the good things that will come from the work that I’m doing, from the philanthropic work I do each day for the young people I get to help.

Also, I sometimes feel like I have to act as healthy as I look when I give speeches to teens, or meet up with old friends.  And the funniest thing is that for those hours, none of them will ever know about my health…that is until I reveal that I am living with an invisible illness!  It is absolutely amazing when I pull up my photos of the physical symptoms of living with a neurovascular condition and the physical symptoms that sometimes to plague my body that sway the pendulum over to the visible illness category.

It is amazing to see the way people treat me completely changes once they can actually see my illness. And that’s so wrong if I’m honest! There is just an entire new level of recognition on these high schoolers’ faces when these young people can finally see that I am someone that lives with a chronic illness but also lives a completely fulfilled life…I just live it on my own terms the way my body allows, regardless of what society says is “normal.”

There are so many days I wish I could yell out to the world, take some sort of magic wand and immediately change how society looks at those it deems ‘different’ in one swoop.  That invisible illnesses are not something to fear or be confused by, but something to learn from and give empathy to like everything else in life.  No one should feel obligated to hide their health, it should just be an automatically understood element to someone’s lifestyle.

Everyone is unique, and if we celebrated uniqueness, then we shouldn’t have a problem embracing that when we meet people, because we would constantly be learning.

I always say that living with an invisible illness is like a game of “Where’s Waldo?” The problem is that none of these people were told to were the signature red-and-white striped shirts and black glasses so no one can find them among the crowds throughout the world.  It is our job as a society to become vocal and talk so we’re found, and to change the stigmas surrounding invisible illnesses of all kinds.

~Dominique

All of Those Exhilarating Peaks and Mega Excitements of My England Travels for InvisiYouth Charity

August 31st 2017

I recently took a trip to England all in the name of expanding InvisiYouth’s new programs and meeting with some of the amazing InvisiYouth supporters we’ve come to love and support over the years and charities we’ve admired for a while.  We have heard from some many of you that you wanted to hear all about my trip, and how I was able to handle all of that travel.  Now…I cannot give too many specifics about our new programs because we’re in development (and really, what would the surprise be if we told you everything before our prelaunch)!  But I can certainly share all the behind the scenes of my England trip and travel.

There are two big reasons why I wanted to make sure InvisiYouth made its way across the pond to England as our first major international InvisiYouth trip. One was the fact that England has been the first and most overwhelmingly supportive community since the day we launched.  The first teens and older youth with chronic illness and disability to follow InvisiYouth were all British.  And the first charities to reach across and want to lend support to InvisiYouth’s mission were from the United Kingdom.

That support network has continued to grow during our two years. We’ve even had an InvisiEvent in London last autumn, proving that InvisiYouth reaching beyond geographic, we are designed for older youth and can reach them anywhere!

The second reason to go to England was due to our Charity Friend role in the first Superhero Series Triathlon.  This was England’s very first adaptive disability triathlon, where people of all ages, disabilities and illnesses could compete in swimming, running and cycling with as much support and adaptive equipment as needed.

With the backdrop of the 2012 Olympics venue of Dorney Lake, the event was going to be unlike anything experienced before.  And with InvisiYouth having a group of teams all competing on behalf of InvisiYouth to fundraise for us, we had to make sure that we were there supporting them on their amazing job well done.

I have to say, what made the experience of bringing InvisiYouth even further into the UK even more special was that I was able to bring my entire family over with me, and getting some awesome memories of family time included in the work trip.  When life gets so chaotic and crazy, which can easily happen owning a charity and almost 25 years old, it is special to make memories with your family.

These are the people that have been my support system throughout my entire life, and even more than most families because they have become my rock throughout my health struggles.  Going through a chronic illness, growing up and finding myself as an adult with health struggles, is more complicated and challenging than any amount of words can describe.  But it has been my family that has help pull me through all the complexly stressful hardships that having RSD and EDS can really bring into your life.  I am thankful for them beyond belief, for their love and devotion, and their support of InvisiYouth Charity and our mission!

The England experience was an amazing opportunity to meet with individuals and charities who are going to be part of this new, evolving chapter of InvisiYouth Charity as it expands its advocacy education with our new tools and programs.  These illness lifestyle management tools are going to be the backbone of InvisiYouth where our events and speaking engagements will feed off as we continue to grow in the years to come.

I have always said that InvisiYouth’s focus is the age demographic in the illness/disability community, not the specific illness or disability, and we focus on the nonmedical side of the medical experience.  There are so many facets of life outside of illness when you live with one, so InvisiYouth cannot be more excited to provide support to help these young people live life and navigate life with illness so it can be fun, empowered and fulfilled in all its unique, adapted ways.

It is important for InvisiYouth to have more than just supporters in the UK, we need to have partners and lead volunteers in these other regions in order to engrain and expand the InvisiYouth tools and mission.  So it is completely obvious that these British older youth and charities will become part of our expansion and part of the InvisiYouth family. I am literally ripping at the seams wanting to share with you how fantastic each of these meetings were, how amazing these people are, and how completely overwhelmed with joy the InvisiYouth team is to know these organizations are going to be part of something we’re creating.

It is a massive THANK YOU to the always dedicated nonprofits like Once Upon a Smile, English Federation of Disability Sports, The Mix UK and CP Teens UK.

It is a gigantic THANK YOU to the empowering and fearless leaders like Sarah Alexander, Chloe Tears, Catrin Pugh and Emma Franklin.

There were even so many other British older youth and charities that we didn’t get to meet in person but we are going to be connecting with through the powers of technology and Skype now that we are back in the states.

Now, coming off such a successful meaningful and fun trip, we gotta break down the peaks and pitfalls of travel with a chronic illness like RSD.  I always joke that the pain and symptom peaks feel worth it when the experience is so worthwhile, and going over to England and creating these connections to expand InvisiYouth’s work even deeper into this nation was worthwhile.

Sitting on planes for almost nine hours straight doesn’t work well with RSD, so you must accommodate to your medical needs.  Getting medical documentation from doctors about being about to move around plane, to have people required to sit near you to help if side effects arise, all important to have.  And if you’re like me, and you are partially bionic like I am with rods and screws in my spine, then it’s always a good idea to have a medical letter notifying your metal (titanium or not) because it’s best to be safe when you’re going through airport security.

Make sure you have your own checklist for your medical needs (like medications, adaptive equipment, and what I call ‘checkup tools’).  I always like to make sure that my staple backups of support like Tylenol, KT Tape, bandage wraps, mini heat packs, resistance bands, and much more.  And you gotta make sure your wardrobe can match too.  Bringing additional layers when I deal with my limbs going too cold, shoes that can adapt to swelling easily, and dresses with slits so I could easily bring respite to my knee.  All these fashion tips made my travel easier.

But a major savior for me was timing.  I had to make sure my schedule was planned with work, with touristy stuff, as well as my medical rest time.  I had to make sure that when I was travelling, whether on a train, a cab, an Uber ride, or even a plane, that I was using my off-time wisely to recuperate from my symptoms to make it through each day.  And when I had resting time at the end of the day, it was all about heating, massages and elevation.  When you put time into your travels to focus on your health, it actually becomes a true travelling vacation and fun experience.

Yeah, when I got back to the states I had to put in some additional PT sessions, resting time and acupuncture, but with some focus on how to combat travel with a chronic illness, you can get through anything and ease what can be a setback on the return home.

Truth be told, I think England is now going to be a staple trip for Team InvisiYouth each and every year!  And while we’ll be having a team of supporters in the country year-round hosting and supporting all things InvisiYouth, I’ll be making sure that the UK is a top priority visit for us as we grow.  Not only did I love the people, culture, architecture, and cities, but I loved how warmly InvisiYouth’s mission and belief system was received and that deserves lots and lots of more England trips to come!

So…where will I be heading next for some InvisiYouth fun and work?  You’ll have to check out the InvisiYouth website for next month because we’re crossing country borders yet again!

~Dominique

Spotlight Story Program: Louise’s Story

Meet Louise Cooper

We’ve gotten to know Louise first as one of the cool British health and lifestyle bloggers that followed InvisiYouth, but we are getting to know her even better as a member of the InvisiYouth team for this winter’s Superhero Series Winter Games this December!  She’s an Ehlers Danlos Syndrome warrior that’s found ways to balance her love of sport and travel with her illnesses, and her open honestly makes her one to watch in our book.

My name is Louise, I’m originally from Essex, England. I was diagnosed with Ehlers Danlos Syndrome, PoTS, Chiari and a whole host of other conditions in 2015 and am still under investigation for a variety of things!

I have always been a “sporty” person, I didn’t find out about my EDS (a connective tissue disorder that can affect the skin, joints, muscles and vascular system with hyper-mobility and hyperelasticity) until three years ago when I was 25, but have been in and out of hospital my whole life and had a back brace for scoliosis at the age of 12 for a few years. The only time I didn’t have to wear my back brace was when I was exercising, so, if there was a sport – I did it! I was also a competitive swimmer throughout my teens, I even made it to nationals (albeit in a relay team by HEY, it still counts!). Unfortunately, after various immune issues and bouts of glandular fever and CMV my exercise started to tail off in my late teens and early 20s.

I held down a full-time job for 5 years, bought my own apartment and car, I had everything I needed! Things came to a head around 18 months ago and my body just said ENOUGH, I was working ridiculous hours at a job in London with the commute, and not looking after myself much. The average person would burn out, let alone someone with a chronic illness, but I guess that’s just the fight in me.

So I started back with physio, some days I’m fine, some days I’m not! I like someone who gives me physio exercises based around the gym – I just respond better that way, I like to be challenged and push myself further however it is SO important to do this correctly and under supervision. Physio will always be a part of my life as I will always have ups and downs in my health but I dont see this as a negative, I learn each time what I can do to strengthen or protect my body in order to prevent or minimize thedisruptionto my body for the next time.

I have found it’s important to use supports, straps and anything else for your physio exercises and gym routines. This will always give you the confidence to know you are safe while exercising! I currently wear, finger, x 2 wrist, knee and back supports when working out. While there’s not an awful lot I can do about my ligaments and tendons, I can strengthen and tone the muscles around my body to get them performing as best as possible! Being back in the gym the last two years hasn’t always been easy. I’ve a fair share of blips along the way with disc tears, bulges and tarlov cysts now appearing, but this has only made me more determined to keep going! Keeping mobile and active reduces my pain, but there is a very careful balance, I have to make sure I dont overdo it and listen to my body!

I also have to make sure that I listen to my health not just through exercise, but through my diet and medications as well.

By health, I mean nutrition, taking my tablets and everything in between. I’ve always had food intolerances, but recently these have become a lot worse. I don’t believe in cutting out EVERYTHING from your diet, it’s everything in moderation and finding out what works for you.

My motto is – listen to yourself. I find my body tells me what I need but generally, I’ll eat meat, fresh veg and a small portion of carbs. Its about trial and error and finding what works for you, and you really, really do have to persevere, it won’t change in a week, it has to be a lifestyle change in order for it to work.

Possibly most importantly – Take your medication!! They are prescribed for a reason – and I know this can be hard, I am forgetful, this is something I’ve really had to work on! It sounds SO easy and its not that I don’t want to take them it just becomes – I’ll do it in a minute! How do I manage it now? I leave my tablets in my room and kitchen, if there staring at me, I can’t avoid them!

When living with chronic illness, it not only can take a toll on your physical health but also your mental health. My mental health impacts on my ability to participate in my exercise plans and my dietary programs. If I am feeling pessimistic (which we are all entitled to at times) or having a bad day, I am less likely to want to go to the gym or look after myself as well or cook my dinner.

Now this isn’t necessarily a bad thing, nobody in the world is 100% positive all day everyday, but for the most part, I think it is important to have a Positive Mental Attitude (PMA). Even on my bad days, I always try and find a positive. For this reason, I usually have flowers around the house – if I can’t think of anything else nice about my day or if I’m feeling low, I can always look at flowers to give me a “pick me up.”  Negative thoughts cannot change what has happened or the current situation you may be in or what your future may hold. But, what can change it? Trying.

Trying everything, and anything thrown your way.

I moved/travelled to New Zealand, started promotional modeling, made a great group of friends, went on adventures, hiked 4 hours in a bush, appeared on TV (albeit an extra!), my health was the best it had ever been! I’ve recently started a forum along with some Chronic Illness friends and we will be uploading beginners home workouts and basic physio (all are qualified, I will just be performing the routines).

But one day I woke up unable to move and spent the next 2-3 weeks in and out of hospital and have since, pack up my room and sold my furniture in New Zealand and returned to Essex to give my best chance of recover and further testing on what we believe may be neurological.

One thing that I’ve always found incredibly hard – and still do – is I look totally “normal”. I don’t have a cast on my leg or have visible scars so I often hear the phrase “but you don’t look sick”. I’m quite open about my health and try and raise as much awareness as possible, by posting “normal” pictures and trying to change the way illnesses are perceived – just because you can’t see it, doesn’t mean it’s not there!

Am I nervous, anxious and scared? Of course! But I’ll keep trying and determined to keep going, if I’ve learnt anything its that were a lot stronger than we realize and give ourselves credit for.

That is why I’m so appreciative of being asked by InvisiYouth to be a part of their Charity Team for this past Superhero Series Triathlon for disability adaptive sports.  And while I couldn’t compete that day, I am thrilled to be part of the new InvisiYouth Charity Team for the upcoming Superhero Series Event this December, Superhero Winter Games. The work they do is very close to my heart and something I’m so passionate about – I wish I would have had this connection to the community in my teens – before the days of social media!! I cannot wait to support InvisiYouth in the Superhero Winter Games run and hopefully raise a bit of awareness too!

Spotlight Story Program: Shira’s Story

Meet Shira Strongin

There is no joke around the statement that 18 year old Shira Strongin is an OG Sick Chick…in fact, she took her personal experiences growing up with chronic illnesses and built an entire international community surrounding the exact name, The Sick Chicks, all about empowering young women living with illness and disability.  When she’s not motivating others, Shira is motivating those law makers on Capital Hill in Washington DC, fighting hard to make changes that will positively impact the lives of so many youth with chronic illness in the USA.  And now she’ll be going to university in the country’s capital, so female illness empowerment is about to get a lot louder!  

“There’s no treatment. I’m sorry.”

Words no one wants to hear, but especially no child or teenager. But it’s the reality of living with many complex, life-threatening diseases. Growing up I knew I was sick, there was something off that doctors continued to miss, but it wasn’t until a spine injury that was a trigger event, that we realized how sick I was. It turns out I have a vascular subtype of Ehlers Danlos Syndrome and other rare comorbidities.

Instead of being in school or doing “typical teenage things” I’ve spent my adolescence in and out of the hospital fighting for my life. I soon realized how absolutely uncontrollable my health was, and decided to turn to advocacy as a way to take back control. I might not be able to change my immediate situation, but I sure as hell would make sure I impacted others’ situations and impacted future health care.

(*InvisiYouth Editing Note: This post was written in August while the fight for Cures Now was happening, a piece of legislation that has now been passed. And yet even currently so much is currently being discussed about healthcare in the United States, so keep on reading why Shira knows healthcare advocacy needs a youth voice!*)

Currently there is important legislation that is a revolution in healthcare that could completely change how complex, rare, and life threatening diseases are treated.

Instead of having to hear the phrase, “There’s no treatment. I’m sorry.” We could have access to previously off-label medication.

There will be research being done.

There is hope for us all, and because this is our future, we must take a stand.

“Congress is working together on a nonpartisan issue that will have a profound effect on the lives of all Americans. H.R. 6, the 21st Century Cures Act, will bring our health care innovation infrastructure into the 21st Century, delivering hope for patients and loved ones and providing necessary resources to researchers to continue their efforts to uncover the next generation of cures and treatments.” – Mission Statement, House Committee of Energy Commerce, 21st Century Cures

Is it just me or do you get chills reading that paragraph?

Finding advocacy allowed me take control of an uncontrollable situation (my health.) Now, one of the pieces of legislation I’m most passionate about and have fought the hardest for is facing it’s day in the Senate.

~ What do we want? Cures! When do we want them? Right. Freaking. Now. ~

We are in crunch time. 21st Century Cures has passed the House, and is now finally going to the Senate after being delayed quite a few times. August is our final time to push for this important piece of legislation. You might be asking things like, “Well, I’m not sick, so why does this affect me?” or, “I don’t have a rare disease, so why do I care?” I’m here to answer those questions.

Health legislation affects everyone. Yes, you might not be sick. Today. But health can change in the matter of seconds, and (God forbid) it ever happens to you, you’ll be hoping that 21st Century Cures in action to produce treatments and cures. Cures are for everyone NOT just rare disease patients. This affects cancer patients, this even affects the hot topic zika virus. But, OPEN Act (something I’m incredibly passionate about that gives bio pharmaceutical companies incentive to make off label medication on label for rare diseases that otherwise wouldn’t have treatments) is only for rare disease patients.

So then comes the question again, “Why should I care?” Because, 1 in 10 people have a rare disease. By that statistic everyone knows someone with a rare disease. So, get involved and care for your bother, your mom, your niece – whoever it may be because without these vital pieces of legislation they might me in the same situation as me…stuck living on borrowed time and who knows how long that lasts for?

For more information about Sick Chicks, the international community all about empowering young women with all types of chronic illnesses, visit their website, or go to their social media pages on Facebook, Twitter and Instagram

 

Why Mental Health is Important to Our Brand: Health=Health

with Guest Contributor Brittany Foster

June 27, 2017

Every so often, I get told, “It must be so hard to have InvisiYouth focus on physical and mental health. They are completely different.” But that couldn’t be further from the truth!

My response…health is health, regardless of it focusing on the mind, or the body. In fact, I have always been a firm believer that you should encourage youth to always take care of their health and talk openly about any struggles or illnesses they face. And that does not mean these should be different conversations. If s someone goes into a hospital for IV treatments, everyone around them would show empathy, understanding and feel somewhat of an ease asking questions. But oftentimes that same courtesy does not apply to an individual going to talk therapy for their mental health struggles.

What is not seen goes without support or conversation and THAT NEEDS to change! What I like to say is that this: the way we respond to illness, particularly the distinction between physical and mental health, is taught at a young age. When we are sick, our parents as us, “Where does it hurt? Show me where it hurts.” And we immediately point to the parts of our body with pain and symptoms. The notion of SEEING illness is engrained into us, and that resonates as an incorrect ‘common sense’ for life. People immediately associate illness with the physical, with being able to see it, to notice symptoms, but when it’s invisible, whether psychologically or physically invisible, it’s a concept we have a hard time grasping.

At InvisiYouth, I explain that we should have our teens and young adults explain their illness in a way that makes them comfortable, never feel forced to show their illness. If we explain symptoms and not show them, people will begin to give empathy because someone will explain their illness, and relate to the description. Don’t show your illness, talk about it!

For InvisiYouth it’s simple…health is health, and illness is illness. It does not matter whether it is a type of cancer or cystic fibrosis, PTSD or bipolar disorder, these are all different health struggles that young people need to adapt, improve and live with in their lives. And since we are a nonprofit that supports teens and young adults with ALL chronic illnesses to navigate life with illness, to gain the tools, knowledge and support to live fun, fulfilled youthful lives, InvisiYouth is always going to extend itself to teens and young adults with health struggles of all kinds (physical and mental, visible and invisible).

And I must say, it truly makes me beyond thrilled that mental health is being discussed more in a positive and accepting light. It’s slowly losing the taboo status, even in the two years since I launched InvisiYouth Charity.

It warms my heart to see so many teens and young adults in the community confidently talking about mental health and invisible illnesses, addressing the struggles they face, their different types of treatment plans, and advocating for awareness and improvements.

But as the conversation grows, as it begins to dissolve the stigmas, we are faced with another issue: the misconception that mental and physical health cannot be discussed or treated as one in the same. I know from InvisiYouth’s community that especially with the teen and young adult population, physical and mental health struggles coincide quite often.

With InvisiYouth Charity, we want to raise more awareness and understanding surrounding the idea that physical and mental health struggles can go hand-in-hand. That a lot of young people living with physical chronic illness also have to work through different mental health health illnesses and hardships. It should not be a shock that when young people are dealing with chronic illnesses that it takes a toll on them emotionally.

One of the young adults we’ve worked with from the very beginning knows this firsthand. Brittany Foster, one of our OG Spotlight Story Program writers, lives with conditions such as congenital heart defects like right aortic arch and large VSD, and pulmonary hypertension that has affected her physical in a variety of ways. But she also discusses openly that the emotional toll it took resulting in her also dealing with Post Traumatic Stress Disorder.

“The thing with trauma is, it doesn’t just leave,” Brittany says.  “You can’t just get over it and you can’t just move on that easily. There will be periods of your life when the trauma and emotion and and strong, and there will be periods of your life when it’s the farthest from your though.”

This is such a true factor that many people, both professionally and in our spoonie personal lives, do not comprehend.  That when you go through such traumatic events with your illness, and the procedures and diagnoses that you receive, it begins to build up and can affect your mental health if you do not get proper help or treatment.  Brittany talks about this duality stating:

“For me, PTSD also looks like a girl who is a pro at doctor appointments. The girl who has everything together and can explain her medical needs and diagnosis without hesitation. It looks like walking out of the doctor’s office completely fine and then going home, only to spend hours crying about what appears to be nothing but is actually every single emotion that you wanted to feel in that office flooding out all at once.”

When people can notice your physical illness, they can discredit your mental health struggles, making them seem to be of lesser value or importance to treat because it is not seen.  But in reality, without a strong mental health, your physical health can also take a toll.  Even worse and more confusing at times in when your physical illness is not even visible, like I had to live with for many years during my teens.  Often my friends could not see my illness, all I could was describe my RSD, but it wasn’t visible and that built up struggles I worked through.

Many teens and young adults with chronic illnesses, like Brittany, have to live in this duality of illness, that they need to be supported as a whole person with struggles affecting their physical and mental health.  Whether it’s talk therapy, writing, the arts, sport programs, or even integrative programs like meditation…finding a right fit is critical for success.  At InvisiYouth, I often will tell young people and their support networks that we will find the types of activities that will help improve one’s mental health while also accommodating the barriers that certain illnesses bring.  

“Finding ways to deal with my traumatic moments has been difficult,” she says. “I do a lot of work through writing, talking openly about it with people I trust, realizing that I am accepted for all those parts of me, and talking through it with people who understand what it is like to live with a chronic condition that can be life threatening.”

Brittany also found sharpened her voice through her experience with PTSD, finding a way to become a strong medical advocate not just for herself, but for so many that follow her journey. She is a prime example of motivating young people to be open about their illnesses and struggles, to learn from their experiences and shine this needed light on the way mental and physical health are perceived. Brittany and I must think alike because she said something that resonated with me, especially as I sat to write this month’s blog post about InvisiYouth’s dedication to mental health awareness and support for the young adult and teen community:

“What keeps you moving forward through all the trauma and the emotions, should be the fact that you are HAVING these emotions. These feelings mean you are actually LIVING.”

I could not agree more with this idea, that even with all the pain (both emotionally and physically) a young person may feel during their medical journey, it is important to know that having those feelings means you are moving forward, you are fighting for ownership and improvement in your life! I often say that you cannot treat the whole individual without looking at their physical and mental health, so it is vital to treat all of a person.

A person needs both their body and mind to succeed in life, to have fun and be fulfilled, so it’s time that charities, companies and society as a whole take notice of this and support health as a wide spectrum of illnesses, both physical and mental, invisible and visible.  What you cannot see is just as important as what you can see!

 

~Dominique