The Catch 22 of Illness and Disability Portrayals in Media: All Representation is Good Representation vs. Accuracy Only, Please

February 25, 2018

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 Morty comes 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.

Photos Courtesy of IMBD

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.

~Dominique

A Season of Giving, A Time of Gratitude for All the Often Unsung Heroes in Our Spoonie Lives

December 20, 2017

 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.

~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

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

“That Looks So Cool, How Did You Come Up With That?” The Fashion Hacks and Tips For Those With Illness

May 30, 2017

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!

~Dominique

What’s In My Bag: The “Boss Lady” Spoonie Edition

March 31, 2017

It’s often so hard to travel on a daily basis as a spoonie, let alone make sure that you have everything you need in order to adapt and function to your health struggles each and every day…Even harder, not to feel the need to carry a massive duffle bag everywhere you go!

For a long time, I’m always asked what are my essentials, my go-to tools and gadgets that I always carry with me, the “spoonie boss lady necessities” as one of our InvisiYouth supporters wrote to me.

So, it seemed about time that I finally reveal what I carry in my bag me, my own personal “What’s in my Bag” segment of this founder’s blog, but it’ll be the boss lady edition with a RSD-inflicted flare.

 

What’s typically in my bag is a range of products:

  1. Precut KT Tape
  2. Hand warmers
  3. Mini Tylenol bottle
  4. Bandage dispenser
  5. Notepad
  6. Pens with multiple sizes
  7. Calendar with to-do list
  8. Portable charger
  9. Business cards
  10. Tea
  11. Sunglasses
  12. Mini lavender lotion
  13. Phone
  14. Motivational quote

Besides the typical license and money additions that are always in any bag I take, I can break down the items I carry with me into three categories: my mini-medical toolkit, my boss girl life and my random necessities.

When it comes to my mini-medical toolkit, I bring the most compact versions of everything that I need with me. Since I have residual RSD, my needs are more for pain management and reduction of muscular swelling and spasms. I have to sort of premeditate what are the possible injuries and flare-ups that can happen during and typically for me, these are the main helpers to get me through the day to keep pushing forward.

I ALWAYS carry hand warmers on me!  They are a literal piece of heaven that can lower my pain super quickly. When it is cold out, or my limbs are freezing up, or my muscles lock up and I cannot move my hand or foot, I rip open the bag and let the warmth take over.  It has always given me a bit of solace to have the warmth.  Next, I bring precut strips of KT Tape.  This is amazing for the swelling and nerve pain that I have on a constant basis, especially when it spikes from overuse or injury.  I wear different patterns to reduce swelling and allow me to move my hand or foot more easily.  With it being precut, all I have to do is stick and apply!

The natural medical necessity is to make sure to carry a pain reliever like a mini Tylenol bottle, and while RSD nerve pain doesn’t improve with any ibuprofen, it helps with the natural side effects that come along with RSD for the rest of my body.  Muscle stiffness, soreness from overusing my right side to compensate, migraines that only affect my left side of my head…this mini Tylenol bottle is a must-have to get through the day.  Last, but definitely not least is the bandage dispenser (which is InvisiYouth merchandise with our logo!!).  While odd for RSD spoonies, you have to look at the side effects that happen with nerve damage.  When my hand spasms and I drop things, or my foot goes numb temporarily and I trip, minor injuries can happen and a Band-Aid is a definite necessity.

My next group of items that are always in my purse will help out my daily life as a boss…that is a charity founder boss. The most obvious thing I carry with me is my cell phone.  Whether it’s checking in on our social media accounts, responding to emails, or marking out reminders through our calendar…my phone has become more of an electronic personal assistant instead of the device I use to call or text.  But I cannot always rely on my phone to remember everything, and that is why I carry a mini calendar with a to-do list in my bag.  It is so important for me as a charity owner to remember all of my appointments, conference calls, Skype meetings and project deadlines so a calendar is vital to InvisiYouth consistent momentum forward.  And for each week, I keep a to-do list so I can cross off the different tasks at hand for the week; it keeps me on task, while also helping me remember what I need to do!

Next up is a notepad that is small and compact, with lots of blank pages. With the natural brain fog that unfortunately plagues my day as an RSD side-effect, I have a hard time remembering all the different ideas and moments of inspiration that come my way throughout the day.  Want to remember a new charity or company to contact for collaboration or fiscal sponsorship? Hear a teen that wants to work with us on advocacy?  Think of a new founder’s blog topic?  I keep a notepad to help me remember all the ideas that pop into my brain and prevent them from being forgotten.  But to write down in my calendar or notepad means I need to carry pens (hope you like our InvisiYouth merchandise specialized, and recycled material, pens!!) in my bag.  To help with my nerve damage, I always carry pens and pencils that are different sizes, some super thin, other jumbo-kindergartener sized.  This helps because oftentimes my grip changes each day with swelling and muscular pain/stiffness so it helps to always walk into meetings with multiple pens so no matter how I’m feeling, I can find one that will fit my grip in that moment.  And last, but definitely not least…you CANNOT be a boss lady without carrying a bunch of your own business cards!  It’s required, and needed, and honestly, there is a silent power that comes along with handing over that card for work!

The last bunch of items I keep in my purse all seem super random to most people, but somehow no matter how many times I clean out my bad, they end up in every bag. First off…obviously since I mentioned my overuse of my cell phone, it is only obvious that I would bring a portable charger with me as well.  I have to make sure that this phone is constantly charged and ready to use, and this portable charger is small and sleek to fit with in a clutch or massive duffle bag. Next, I always bring a mini lotion with me in my bag, but not just any lotion.  I always bring either a lavender lotion (my favorite is L’occitane Lavender hand cream) or I bring a eucalyptus-blended lotion (something like aromatherapy eucalyptus spearmint from Bath and Body Works). For me, the scent of lavender is a quick stress relief so if I’m every feeling stressed or anxious, I rub on some lavender lotion and the aromatic scent brings a quick level of ease.

Along that line of helping with stress, I usually carry a tea bag with me in all my bag.  In a lot of meetings that I go to, they usually ask if I want some coffee, tea or water to drink, and while I ADORE coffee, you want to stay nice and calm, not shaking from too much caffeine, especially if you have meetings all day long. There are dozens of flavors you can have (just like my chamomile flavor from Stash) and you can typically get hot water in most delicatessens or coffee houses so it’s a go-to in any scenario. Next, I will almost always carry a pair of sunglasses with me because with having residual RSD in the left side of my next and head, I can get spontaneous migraines that afflict only the left side of my head, and that can make me sensitive to the light. To prevent me having any problems going to work, or hanging out with friends, I have sunglasses to dim the brightness.  And if that means I need to be ‘that girl’ who wears her shades indoors…well I will be that person on occasion for the sake of my health.  Last, but certainly not least, I like to carry a motivational quote with me wherever I go.  Usually I have an inspiring quote engraved on a rock, like my favorite quote “This Too Shall Pass” that slips into any purse pocket.  It’s small, but just this little thing can give me that mental push to keep going when the work load piles up or my health starts to stumble.

What I carry is not just assisting me or improving my quality of life, but it’s simply empowering. By having all of this in my bag, I empower my life and the woman, the charity owner, the spoonie that I am because I take control of each choice in this very small part of my life.

It is my actions and my decisions on what to bring that motivate me because I hold all the power in what I bring which will help me during the day to make sure I can strong and achieve my daily goals.

 

~Dominique

New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life

February 8, 2017

As everyone seems to be trying to stay true to their New Year Resolutions, some were daring and used a pen, others are like me and preferred to make sure their new hopes and goals could change with the ease of an eraser. Recently, I’ve been hearing from a lot of you wanting to know about the tips and tricks I’ve learned over my spoonie years to get off on the right foot in 2017 and balance my two competing lives: my work life and my illness life. And especially since my latest flare-up of a RSD episode after my injury a few months ago, I’ve had to delve back into this balancing act a lot more. I’m like every one of our youth, working hard to find the ways I can still work while not hurting myself. As I tell each medical group I speak to: “Find the ways to compromise the treatment plans without compromising your patient’s health.”

Continue reading New Year, Same Health and Same Work: Finding the Always-Changing Balance of a Work Life and Illness Life

Spotlight Story Program: Brittany’s Story

Meet Brittany Foster

Her heart may have given Brittany Foster lots of medical struggles throughout her life, but she has one of the kindest and passionate hearts out there. Brittany has used her experiences through pediatrics into adult healthcare to give back, to inspire others to take control of their health journey and become their own medical advocates.

From birth to 24 years old I have been diagnosed with quite a few conditions. Some chronic, others have been able to be “fixed” or “treated” with surgery.

At birth I was born a “blue baby” and would later be diagnosed with pulmonary hypertension, right aortic arch, and a large VSD. These conditions have later led to having a thoracic bypass surgery due to anomalies related to the right aortic arch, atrial tachycardia, congenital sinus node disease, sinus pauses, bifascicular bundle branch blocks, and a permanent pacemaker implant.

My other conditions I faced as a child were a surgical repair for currarino triad syndrome which is a sacral teratoma. Throughout my teen and early adulthood, this has left me with chronic bladder control problems, and chronic lower back pain. An intestinal surgery I had for a blockage as a newborn later affected my late teen years due to scarring of the fallopian tubes. This led me to have both fallopian tubes removed at 18 years old as well as one of my ovaries removed at 21 due to endometriosis and large cysts.

Continue reading Spotlight Story Program: Brittany’s Story

Spotlight Story Program: Rachel’s Story

Meet Rachel Necky

As a rockstar athlete, teen Rachel Necky was ruling her life as an ice hockey player, but one injury would change her life direction. Dealing with the neurovascular condition called CRPS, Complex Regional Pain Syndrome, Rachel had to dig deep, find even more strength, and use her dedicated athlete mentality to fight back against her condition and realize that she could push herself and conquer all.

My name is Rachel Necky and this is my story: When I was little, I always noticed that simple things such as someone poking my arm and tickling me caused me pain. I didn’t understand it and didn’t really think much into it. In 2012, I fractured my fibula playing kickball in gym class. I went to the first orthopedist I could get an appointment with. They initially gave me a walking boot.

Unfortunately, that didn’t help because it was pushing on a very sensitive spot on the side of my leg–I call it my soft spot.

So, the doctor decided to take it off before I was fully healed, and they didn’t have me go to physical therapy. Once the boot was off, I started having very extreme, intense pain on my soft spot. The pain progressed and bounced over to the same spot on my other leg and continued switching back and forth. I went to another orthopedist and they told me I had shin splints.

The pain began to spread until it covered every inch of my body.

Continue reading Spotlight Story Program: Rachel’s Story

Spotlight Story Program: Erin’s Story

Meet Erin Raftery

Since before Erin Raftery could even talk, she was dealing with problems in her health. From a battle with leukemia to cardiac conditions, Erin has had to adapt her lifestyle to her health, and that made Erin a stronger and more accomplished young adult than her wildest dreams.

Yes, I spent a lot of my teenage years in outpatient care at pediatric hospitals.

When I was eighteen months old, I was diagnosed with leukemia and received chemotherapy until I was three years old. The chemotherapy caused me to have several after effects. The first was diagnosed while I was still receiving chemo, and that would be Cardiomyopathy.When I was ten years old, I was diagnosed with epilepsy. When I was a sophomore in high school, my heart condition worsened and turned into a condition called Dilated Restrictive Cardiomyopathy.  Also in high school, I was diagnosed with asthma. And lastly, when I was sixteen years old, I was diagnosed with primary ovarian failure.

Continue reading Spotlight Story Program: Erin’s Story