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 I get a rare bit of time to relax, I sometimes just want to put my feet up and watch some TV. And when those flashy, at times 100-level volume, commercials come on, my interest is usually only peaked when a new movie trailer popped on the screen . Well…trailers or one of my staple favorites commercials like the Swiffer commercials with Lee and Mortycomes on for a good laugh. I always like to see what stories are being told in film, and what may be worth a watch. Whether I’m in need of a good laugh or cry, a love story or comedy, or some intense action–never a horror film since I’m too easily spooked–trailers are my swipe left or swipe right decider.
In the last couple years, I’ve noticed what feels like a push in films that have led characters and plot lines focused on chronic illnesses and disabilities. You would imagine I would overwhelmingly love seeing this, after all, I founded InvisiYouth Charity where I’m constantly pushing and motivating for equal representation. But as I watch these trailers, the feeling is mixed between a quick boost of excitement and a similarly immediate drop of frustration.
I feel flooded with a ping-pong of thoughts:
Wow, finally a film bringing a lead character with a rare, not main stream-known disease.
Are there seriously no disabled actors that can actually be hired to actually portray the actual illness or disability?
Representation is great for young adult health conversations and awareness!
Does every chronically ill or disabled person in a movie have to be the center of a love story of overcoming some massive life crisis? Can’t they just be a character with a storyline that happens to be sick or disabled?
It’s brilliant getting conversations going about young adults living with illness. They are just young adults like anyone else too.
These actors aren’t acting like an authentic sick or disabled person. Someone with that illness definitely cannot do that, it’s not true.
For me, it’s a Catch 22 scenario with my sentiments on what truly matters most: awareness or accuracy. And maybe I maintain an overly positive mindset and believe that both are valuable, and try to find the best in what is coming out in the media. I want to believe that, while I have a ton of issues with the inaccuracy of portrayals and lack of diverse casting, there can be some good in this wave of films addressing characters with disabilities or illnesses, especially for the young adults that are watching them. Just in the purity of having more people watching films showcasing lives lived by people with disabilities and illnesses; that while the health stories of these individuals may be more complex and unique, but their life stories are just like anyone else. The more eyes we can get from them general public to see this community, the more understanding and change that can arise from it.
If no films were coming out with characters living with chronic illnesses or disabilities, then the ease in which people can talk about the health subjects diminishes. When I suggest to young adults talking with friends about their health struggles, I tell them sometimes it can help to show their friends what that daily journey is like.
And often, young people tell me they want to reference what’s sort of similar to their life and portrayed in the media, the films and TV shows they watch, with characters living with similar conditions.
You can have young people tell their friends to watch the 5th season of Freeform’s THE FOSTERS because a main character, Jesus, is living with a traumatic brain injury (TBI), and the show is displaying an entire arc about the process of recovery personally, socially, academically and emotionally. Actor, Noah Centineo, and the writers, talked often about the preparation that went into bringing accuracy and justice to this plot line.
Then we go to another show, Canadian-born (and globally famous) teen TV drama, Degrassi, where so many different story arcs for decades showcase what various illnesses and disabilities could look like for teens. From characters living with mental health struggles like depression and OCD, to illnesses like leukemia and cystic fibrosis, DEGRASSI prides itself on tackling topics that show diversity in all its forms. While hiring actors living with these health struggles lacks, Degrassi breaking stigmas to open the conversations in real life, to create more understanding, open minds and change.
However, a line needs to be drawn when it comes to this wave of media using characters with illness or disability to romanticize or dramatize the storylines.
Health struggles should not be a plot device to add more complexity to a storyline or character, because it reality, that is not how it works. As someone living with an illness, I don’t get the luxury to “turn it on or off” when it suits the situations in my life…and there certainly isn’t any romantic background music playing when I have to tell people about my health struggles. This is where accuracy completely disintegrates and it can tarnish an entire film, when these storylines lack realism. So yes, while I can be happy for opening the door of conversation and normalizing the visibility of illnesses and disabilities mainstream, they are done so without accuracy. And that’s should not continue.
Last year, films came out and addressed lead characters living with disability and illness…but the characters and storylines where not only lacking in accuracy to the daily life of someone with that health struggle, but also the actors were able-bodied and healthy.
That inaccuracy may not be apparent to audiences not living with health issues, but for anyone living with any sort of illness or disability, the films and actors are like neon lights pointing out the wrongs. With WONDER, while a beautiful storyline, it has an able-bodied character portraying the genetic disorder Treacher Collins Syndrome.
And with EVERYTHING, EVERYTHING, the immune-deficiency disease SCID, Severe Combined Immunodeficiency, is also portrayed by an actress not living with illness—and when this film was coming out, all over our twitter we saw reactions from the Spoonie community talking about the major inaccuracies of the illness portrayal and character lifestyle. “It’s so unrealistic” I would hear youth say. What made it feel even worse was that a general audience would never notice the flaws and assume this is how relationships and life can look for any of their friends with illnesses or disabilities. Stereotyping the “illness lifestyle” is what continues to enable ignorance, lack of understanding and empathy for change.
Even a film that I enjoyed, THE FAULT IN OUR STARS, lacks realism and has two able-bodied actors without illness portraying osteosarcoma/subsequent amputation and Stage 4 Thyroid Cancer. I enjoy the film and book as pieces of fictional storytelling. I love the love story of the two characters, the satire in which teenage illness is discussed among all the characters, because while not accurate at times, the tone is so similar to my outlook. I tell friends this movie has moments that are relatable to the experience, and it is a film that can get my friends to feel comfortable asking me questions about my health because of that.
In a way, films and TV shows that have what I call “the health struggle plot line” need to be used as talking points or references to help bring that destigmatizing conversation WITH A DISCLAIMER. There needs to be a ‘fine print’ comment every time you want to use a film or character to reference…saying “well this character is living life with an illness similar to mine…yes, it’s not super accurate, but it can show you a bit of what that feels like for me.” I always use the disclaimer method, when using media and film to try and explain to friends what my relationships and lifestyle can be like, and that can feel disheartening because there’s so much in daily life I need to teach others around me as I adapt, I shouldn’t have to do this with film portrayals too.
In my opinion, it’s disheartening that in 2018, we still have to put a disclaimer to these storylines, that they cannot be made accurately. And yes, let’s giving the benefit of the doubt because everyone’s experience with an illness or disability is different. Two people with the same diagnosis do not respond, treat, or adapt to life the same ways…so one portrayal in a film may match up exactly to my life, but not someone else’s with my diagnosis. That’s the way uniqueness in society works, so it’s all about finding common ground and working from there.
Look at a movie coming out next month, MIDNIGHT SUN, where the female lead is living with a rare genetic disorder, Xeroderma Pigmentosum. Is it wonderful that rare diseases are FINALLY getting some screen time and going into mainstream films so more people can talk about it? Absolutely! But how much does it suck that the portrayal is by an actress without the illness, and the illness is romanticized, instead of realistically portrayed? A lot!
To see films using illness as a plot point for romance and drama, that is what needs to stop because it’s not realistic. How about films just happen to have their lead characters living with an illness or disability, and something else causes the drama or romance to build? That would be interesting AND original…two things films are always looking to create.
But to me, what matters most, what it truly gets down to, is the lack of opportunity for actors with disabilities or illnesses to portray what is this life and journey accurately. So often, characters are developed for a film or TV show where they are designed to have an illness or disability and the actor that gets the part has zero connection to it.
They are not chronically ill or disabled and have to “portray” the role without any personal experience. It seems so contradictory to not hire an actor with a disability to portray a character with a disability. There are so many talented young people around the world living with chronic illnesses and disabilities that are actors and they should be the first choice for hire! These individuals should be the ones on the casting list, and it’s for not just accuracy in the storyline, but also it continues to build inclusivity in the industry.
And even more disheartening is how true this is when it takes me FOREVER to come up with just a couple examples in my head of TV shows or films with accurate casting. It shouldn’t take much effort to list off accurately casted films or shows. When the industry says, “oh there aren’t that many actors to fill the need” or “it would be hard to assist or adapt to these actors” I have to call their bluff and say that’s such a ridiculous copout. Heck, our latest Celebrity Ambassador, Melissa Johns, is a British disability activist and actress, and she’s such a talented actress!
Look at the positives when a film or show are accurately casted. The Freeform show SWITCHED AT BIRTH, was centered around many characters that were deaf or hearing impaired (the actress Katie Leclerc who portrays one of the protagonists, Daphne, lives with hearing loss due to Meniere’s disease, an illness also given to her character). The variety of communication like American Sign Language, is a great example of how to integrate differences between those living with deafness or illness and those who do not. And bonus… actors like Katie Leclerc, Sean Berdy, Ryan Lane, and Marlee Matlin, have actual hearing impairments so it was accurate and inclusively casted! The show feels even more authentic, passionate, and inspired because the characters are portrayed by individuals with the exact illness and disability.
Wouldn’t the film industry want to bring that much truth and emotion out of their audiences, bring that much notoriety and conversation and impact society enough to make lasting change?
I think it should, and that is the main point of contention in this international debate.
That is why I really want to believe in the positives of both seeing all this representation of illness/disability in films and TV, while also seeing the benefits of accuracy in storylines when illness or disability are being brought into the fold.
While you can either find representation or accuracy more important in films, what truly matters is that there needs to be more opportunity for actors with illnesses and disabilities. There needs to be more roles written to portray this community, with requirements of accurate casting. There needs to be more opportunities for these fantastic actors to be hired to show their talent playing any roles, whether their illness or disability is the focal point or not.
My truest goal is that we can see films or TV shows that have actors with illnesses and disabilities on a regular basis, a true progression that needs to be made to show all the facets of societal diversity.
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.
As the holiday season rolls upon us, we are all bombarded with some holiday spirit in some shape or form. Sometimes it may not feel that jolly or cheerful, when that serious case of F.O.M.O. kicks in because your health or limitations may prevent you from being the #1 social member of your friends. That’s gotten to me loads of times in the past when I had to give the “spoonie no” because my body prevented me from taking part. But as years have done on, and I’ve settled into my adapted-normal way of life, I have come to note that my sentiment of missing out should not be my focus. Not just during the holidays, but for all 365 days of the year.
I have always been a lover of the wonder and joy that the holiday season brings…seriously the Hallmark Channel Christmas movie Marathon is a background staple in my house. All that fresh pine and cold, crisp air, that rich warmth of Christmas light illuminated around while being surrounded by family, that make makes you feel a bit more wonder-filled than any other time. It is from my love of blissful optimism of this time of year that my focus remains on all the good times, fun moments and what I’m capable of and grateful for as the year comes to an end. When you deliberately choose to focus on what you have and are grateful for, the more your attitude will be optimistic and you’ll be able to feel that holiday spirit.
As I let that Christmas energy spread, I get time to reflect on what to be grateful for, some major gratitude. Usually, I’m told to be grateful for those moments of health, of my body functioning well. And that is something I am thankful for as this medically-crazy year ends. But I want to show love to that second layer of my health journey, my caregiver inner circle. All too often, I’m complimented on how I adapt my health struggles, and the platform my organization has given for the young adult “medically unique” community to live fun, fulfilled and badass lives. And while I appreciate the kindness, I always want to say, “there’s so much love and support in my life, that’s why I’m capable of doing all I do.
The support systems we develop as young adults with chronic illnesses, injuries and disabilities are the unsung heroes in our daily existence. They are the individuals that see us in our vulnerable and courageous moments in life, they ones who advise us on our life choices and stay by our sides to get us through all the hurdles and cheer us on when we reach a milestone. They come in all forms: parents, siblings, loved ones, friends, caregivers, doctors, nurses, physiotherapists, talk therapists, and more. These supporters are like secret ingredients that make for the perfect medical recipe for recovery and lifestyle success when living with illness or disability.
As I looked back on 2017, I noticed that it was one of a lot of medical complexities for me personally. Going into my ninth year as someone with health struggles post-injury, I was able to really look at all the people who’ve been there for me, who’ve stepped up during my resurfacing injuries, and new health battles. The people who’ve been part of my story since day one, and those who’ve joined along the way. I couldn’t reflect on 2017 without talking about the people who’ve helped pull me through a tough medical year, and have assisted me being able to go into 2018 with more clarity and adapted normalcy again.
I’ve been thankful for my friends, both new and old for always being there for me. When many of friends were confused by my health struggles when I was younger, I had lots of people pull away, using their lack of understanding and insecurity about my health as a means to an end. But the friends I have now, my loyal group of funny and trusting friends, have always been open-minded, asked questions, just gave me a shoulder to lean on, and a stupid joke to laugh at. Some were friends before my injury, others during the mist of my medial chaos, while more are from the chronic illness community that’ve joined my life since I launched InvisiYouth.
I’ve been thankful for my doctors and clinicians who’ve been part of this crazy journey since I was fifteen with a swollen blue foot and hand, especially my physical therapists. When your doctor count goes as high as mine does, you tend to have a special place in your heart for those that truly dedicate themselves to making your health improve, to beating the symptoms and setbacks alongside you. I’ve had the same physical therapists since day one, basically seven years, and it is their constant fixture in my treatment, especially this year as I walked back into the PT world yet again, that really made me grateful for them as they pushed me and made me laugh through it all.
I’ve been thankful for my sister, who’s always been a supporter and warm heart throughout all the changes that life can bring.She’s been a best friend that’s always made me continue being young and energized while my health was not. I got to grow up and experience a semblance of normal teen years because my sister made sure I got to be part of it.
I’ve been thankful for my parents who’ve pulled me through the ups and downs my health brought. For my dad’s ability to come into my PT sessions, tell me jokes and make me laugh when my body wanted to give up. For my mom’s great heart, dedication and undying love as she brought me to every doctor, talked out medical decisions, showed me the positive in each situation, so I always believed in myself. My parents are the greatest people I know, the best duo I’m grateful raised me to give back and love with a whole heart.
It is these people, their support of me that often goes unnoticed by the outside world, but it never goes unnoticed by me.
These unsung heroes offer their support, expertise, humor, shoulders to cry on and guidance without ever being asked. They are the individuals I am most grateful for as the year closes, and as I’m moving into a new invigorated chapter of life, especially in a new exciting time for InvisiYouth Charity, I have these people, and so many others that aren’t even mentioned, to thank.
Gratitude for your support of my health, my organization, my dreams and just of me. And spoonies: take that time to show some gratitude to your support systems, to your unsung heroes this holiday season. It’ll surely get you in the spirit of getting 2017 ending on a high note and 2018 starting off in a positive footing.
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.
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!
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 (aconnectivetissuedisorderthatcanaffecttheskin, joints, musclesandvascularsystemwithhyper-mobilityandhyper–elasticity) 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. PhysiowillalwaysbeapartofmylifeasIwillalwayshaveupsanddownsinmyhealthbutIdon’tseethisasanegative, IlearneachtimewhatIcandotostrengthenorprotectmybodyinordertopreventorminimizethe “disruption” tomybodyforthenexttime.
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! Keepingmobileandactivereducesmypain, butthereisaverycarefulbalance, IhavetomakesureIdon‘toverdoitandlistentomybody!
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!
Whenlivingwithchronicillness, itnotonlycantakeatollonyourphysicalhealthbutalsoyourmentalhealth. 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).
ButonedayIwokeupunabletomoveandspentthenext 2-3 weeksinandoutofhospital 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 upcomingSuperheroSeriesEvent 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!! IcannotwaittosupportInvisiYouthinthe Superhero Winter Gamesrunandhopefullyraiseabitofawarenesstoo!
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!
Way before I got injured and before I ran my first fundraiser, my dream job was one of two options: a professional tennis player, or a fashion magazine editor. I loved the ability to describe myself in clothes, to layer and accentuate how I wanted to look and feel in a moment. And as I’ve grown and life and RSD illness has happened, I’ve expanded my interest in philanthropy out of a pastime and into a career but that love of fashion hasn’t changed. As a teen, in my early years of RSD, I saw the way my physical health altered the way part of my body looked differently.
Sometimes that was physically different and other times it was my medically-assistive equipment. I was determined to control the way I looked to use my love of clothes to accentuate, alter and hide my RSD symptoms at my control. And after years of being asked, “how did you do that?” or “I didn’t even notice you were sick,” I decided to give up some of my big spoonie fashion hacks.
(*These are all fashion tips that have worked for me based on my chronic illness affecting my physical limbs, where my medical equipment was usually on my body, and not separate material*) So now, let’s share what’s been my strategies to being fashionable and medical:
#1 Maxi is Your Friend
Since I’ve lived with RSD, it’s spread to the entire left side of my body, and with that has come a lot of different braces and bandages that I’ve had to wear. When it went into the left side of my leg and foot, I had to wear all different types of ankle braces, compression leggings and bandages/tapes. Some of them…not the most attractive medical-assistive equipment if I’m honest. There were lots of times when I couldn’t fit my foot or leg into pants, thus, making my love for dresses and skirts to skyrocket! When the color didn’t match, or I was attempting to disguise my braces from other people.
One big way to do this is by wearing maxi dresses or skirts, long enough that the fabric covers what’s underneath. An easy way to cover this up, and give you easy access to change bandages or adjust braces, is to wear dresses with slits or scalloping. This way, you can always move your dress to cover, or show it off, it’s all under your control. The longer the dress, the better the control of coverage or exposure.
#2 The Looser the Fit, The Better the Disguise
Naturally, my personal style always goes for the loose-fitting, all-American taste. This works in my favor since my injury and subsequent illness because it gives me the luxury of dressing the way I like without compromise. I do not have to wear different clothes because they cannot fit with my braces or bandages or fabric pieces; everything fits underneath. Also, a big issue with RSD is hypersensitivity and pain with touch, so having blousy fabric works well because I don’t have to worry about pain from fabric gripping onto my skin, and I can control pushing the fabric so it doesn’t sway around. Another advantage is that if you’re having a self-conscious day, and I often did when my illness symptoms was visible, the oversized look could disguise more. Big Tip: I always will add things like belts, or tie up a sleeve, or toss a jacket on my shoulders so that I can give shape to my outfit, and adapt it to my medical needs.
#3 Color Pops Can Make a Look
There are so many different medical accessories out there (and for me, and the entire InvisiYouth team, there is not enough promotion or charity-company partnerships out there yet (and we want to change that IMMEDIATELY!) that can make fashionable medical equipment common knowledge and accessible)? It is a vital tip to learn now…research, research, research when it comes to medical accessory styles and colors.
But back to fashion hacks…when you have the knowledge that different medical accessories and the colors they come in, you give yourself fashionable options. I would also search and research what colors different braces or isotoner gloves came in so I could get different options. One best example is KTTape and all of the color options. I would always buy black tape in bulk, but also get red and blue because I loved mixing the colors and matching outfits. KTTape is a prime example because the patterns you have to make for physical assistance are also creative and look cool with different colors.
#4 When in Doubt, Add an Accessory
After a while, I was tired of constantly trying to hide my RSD symptoms and other braces were to bulky to disguise. So instead, I began to try and embrace what was my current medical status to be able to do so I could fashionably experiment again. Once I accepted the fact that I had to wear medically-assistive equipment on my body, and accepted that there were going to be days I had to wear them, I tried to find ways to adapt with it. I would wear high ankle boots with socks that would accentuate the coloring of braces, wear patterned fabric tights so I could also wear my compression stockings or sleeves, anything to highlight and morph with my braces.
One major way I would accessorize is with all the gloves, braces, tape and bandages I had to wear on my hand during my RSD prime days. I would wear oversized chunky bracelets so my braces and tape were colored. I would where overly-long sleeves and tied on to the braces so that they were able to be hidden and shown depending on my mood. And I would even take scarves and fabric pieces and tie them around my braces on my hand in different designs, tying knots or bows. Since I had issues with pain and swelling, or muscle spasms, I found it beneficial to add different fabric textures, so I would do what my physical therapists called “interim PT desensitization” during classes.
At the end of the day, there was a point I made by embracing my illness and fashion. It was and still is never about the disguise or hiding the illness.
It is about empowering yourself to choose how you want the world to see your illness. Truth is, when you need to use adaptive equipment, young people do not get a choice because it is medically necessary to use them, whether it be items like canes or wheelchairs, PICC lines or braces. When you don’t get a choice in using medical equipment, the power lies in how you use it or wear it, and that is what I began to embrace with my fashion love.
Give the power of choice back to yourself and defy what the media claims are beauty norms. When you embrace what you need to wear and use, and have fun with fashion, no one else’s opinion matter because your empowering yourself and your day!
“Are you sure you’re gonna come, or are you gonna flake last minute?”
“What’s up? You’ve been MIA for days?”
If you ask any teen or young adult with chronic illness, they can probably share hundreds or more quotes like this. Hundreds of times when they have had to put their health first and change or cancel plans with friends or family. Countless times when they’re suddenly dropped out of a group text, or given the generic “I’m busy” response without warning or a true explanation.
But what I’ve learned from my own health struggles, and I’ve learned from our youth supporters, is the guilt, stress, and anxiety that comes from the feeling your peers equate your illness as making excuses. We can wait anxiously to see if our friends understand why we may “disappear” or believe it’s just another excuse.
What we need to address here is the basic fact for our healthy circle of friends: illness is not a crutch (metaphorically speaking, because sometimes it’s needed literally) and it is not used as an excuse.
Does that friend of yours with an illness want to cancel on plans? Not really!
Does that youth desire to be so misunderstood when it’s simply their health? Absolutely not!
So the true goal here is to lay out the truth. To give the basics of really understanding that illness is not a “hall pass” to get out of events or be distant, illness is simply that…illness. It is confusing, and unpredictable, and can take over life in the blink of an eye. And we need to empower the youth with chronic illness to be confident in the fact that they might not always do the “popular” thing, but they are always doing what’s right. Yet again, sometimes what makes the most sense, is often forgotten in our daily practices, so we need a bit of a reminder.
Reminder #1: Most chronic illnesses don’t have a schedule
While PT sessions, doctor’s appointments, and medication treatments all fall into a schedule, the nitty gritty of having an illness each day definitely does not. You cannot plan when you’ll have a flare-up, side effect or an episode…it just happens. It’s the main explanation for why many of your friends living with chronic illness have to bail out last minute. I remember times when I was getting ready to hang out with friends and suddenly my RSD symptoms would spike, and I had no energy to move without excruciating pain, so I would cancel last minute. It was a sudden change in my plans because of the sudden change in my health.
These moments when illness and injury take over are never planned, they are spontaneous, and in reality, it is not what any young person wants to happen in that moment, or ever! Youth still want to be teenagers, and young adults, hanging out with friends, going out, and living life to that ‘normal social standard.’ But when you add illness into the mix, you have to become comfortable with the notion that your schedule is often dictated by your illness, not your desire. And that’s not only a reality that our spoonies need to understand, but there friends and family as well. Our inner circle, need to be aware of this fact. This allows them to gain an insight into our world and to better understand that when you don’t show up, your illness is a valid reason, and never an excuse. There is no way to say “your using your illness as an excuse” because newsflash, if you have to bail out on friends because you’re not feeling well, that’s as valid of a reason as you can have.
Quick Tip: Come up with your own weekly calendar and map out your PT, your medications, your doctor visits. This way, you can see when your body might be too exhausted, or your certain treatments might take too long/have side effects, and that allows you to plan ahead with friends. Now, this isn’t fool proof, we cannot see the future, but it give you that ‘educated guess’ on whether or not you’ll genuinely be able to get out with your friends.
Reminder #2: It’s just as annoying to spoonies to have to pull the “health card” as it is to hear it
What people need to understand is frustration is felt on both sides of what I call “pulling the health card.” Yes, I can understand where friends come from when they get annoyed that you might keep bailing out, or you completely ghost temporarily. It is frustrating that you make plans and suddenly a friend keeps pulling out, saying something happened or you’re not feeling well. You begin to assume that your friend just doesn’t want to hang out with you and wonder if every time they say it’s a health problem, if that’s true for each case. And the only reason I know this is because when I was a teen living with RSD in its prime, I didn’t have any friends that dealt with illness. A party of one in the spoonie community! I was forced to be around all healthy youth and find my way to get this community to not just adapt to my new normal, but to better understand why I felt their ignorance to my illness.
But what many healthy friends do not understand is that the frustration is equally felt on your spoonie friends, even more so to be completely honest. It is annoying to be stuck in a body or mind that does not function at 100% all the time and hinders you from doing everything you want. It is agonizing to know that when your illness completely builds into a ‘bad day’ you need to change your plans in order get through the hours you have left. Most teens and young adults with chronic illnesses do not want cancel plans, they don’t want this to change, but they need to do what is best for your health. This is not a one-sided annoyance, because really think about it: would you want to be getting ready to go out, and suddenly your illness symptoms spike, or you’re exhausted with fatigue, or you have bad reaction to medications/treatments…and then you have to send that text that you’re not able to hang any longer? The main answer is absolutely not! If you put the shoe on the other foot, your friends will realize that you need the blatant understanding, because it’s frustrating to all involved.
Quick Tip: Try to be the host of your friend hangouts. It’s a simple fix, really because this lets you be in complete control. You get to choose the activities and your extremely comfy clothes. You would be able to have every one of your medical needs at the ready for you, whether it’s IV treatments, medications, heating pads, ice packs, bandages and wraps and more. With friends that would want to learn more about your illness, or want to be as open or understanding as possible, they would be able to adapt your hangouts to your needs.
Reminder #3: Sometimes generic replies are easier than explaining the reality, so accept them
Let’s be real, many teen spoonies don’t really want to share all the little details of their illness with their friends. And especially if they feel self-conscious about their illness and the way their friends perceive it, they will not want to give up the true details. If you feel your friends are going to judge the truth of your illness, or think you’re making up an excuse, you begin to hide their realities of your illness. Why share and be judged, when you can just deal with the backlash of bailing or going MIA? I’ve had youth tell us that they would even send photos of themselves to their friends just as proof that their illness has changed their plans…and that should not be the case! No youth should feel they need to justify their illness and prove their reasoning for canceling plans!
That is why so many times, youth with chronic illness decide to just send these generic, nonspecific replies when they need to cancel plans. It can be so much easier to just say “something came up” one time, than say “family plans last minute” another time, and then finally explaining the real medical reasons on other occasions. The nonspecific texts are not meant to be rude or not descriptive, but rather a way to protect a very personal health struggle. And it does help to truly avoid that inner feeling that youth with illness can feel about some of their friends believing their illness is being used as an excuse.
So…at the end of all of this, what’s the takeaway? What’s the moral of this story? Friends and family: remember that we cannot control when our health takes a front seat in our day. When we sometimes back out, or disappear with our generic explanations, it’s because we really don’t want to pull out the health card or have to explain every detail. And spoonies: remember to be honest with what you need, and know that sometimes, while it’s not always what we want, you have to do what’s best for your health. You need to find that inner confidence in understanding that there will be moments when friends will feel like outsiders in your life, just like you may feel external to your social life. And this is okay! It’s all about being confident in the ride of your social life, in the peaks and falls of participation as I like to call it.
The moral of this story: ILLNESS IS NOT EQUIVALENT TO AN EXCUSE, IT’S A REASON FOR ACTIONS, AND THIS STEREOTYPE NEEDS TO CHANGE.
It’s alright to be the completely involved friend, and sometimes drop the ball…the point is that your friends and family support your health journey unconditionally and allow you to pick up that ball whenever you’re ready.