The Shirt I'm Going to Wear to Make My Invisible Illnesses Visible


As a person with an invisible illness/invisible disability, I often get funny looks when being visibly disabled in public. We have all heard stories of the notes left on cars parked in handicapped spots asking “Where is your wheelchair?” I have often wondered if I needed to start wearing a sign in pubic to get any respect. I already developed some print-at-home cards to hand out to the particularly uneducated, but most people are not bold (read: rude) enough to question me openly.

On the days that I can function — at least to the average viewer — as a normal person, I often wonder how many people around me are doing the exact same thing. I look no different than any other person on the street, but only because they cannot see the hundreds of things going on in my body and behind the scenes to make me appear that way. How many people do I pass on the street who are fighting a battle like mine, putting on a facade like me, to get though the day. According to statistics, one in five in the US has a disability — so I probably pass by several every day, none the wiser.

So September 30, 2016 — the Friday of Invisible Illness Awareness Week — is going to be my Visibility Day. The day when I walk around with a sign on, or at least what most of use as our own personal billboard: a T-shirt.

As a person with an invisible illness, Invisible Illness Awareness Week has always had a spot in my heart. Whether it is an invisible physical illness/disability, invisible mental illness/disability, or invisible learning disability, many of us struggle for the recognition and validation of what we go through. It is one thing we have even common, even if how it affects our lives is completely different. A week where we can come together and share our struggle together, even if it is the only struggle we share. It is entirely possible I am the only person in my small town who struggles with dysautonomia, but I seriously doubt I am the only one who struggles with an invisible illness/disability.

graphic of blue t shirt with words dysautonomia and endometriosis

So I want a day where I wear the struggles of my life on my sleeve — literally. I plan on making a shirt with my conditions listed on the front (dysautonomia and endometriosis), probably using a hashtag (because we live in a Twitter world) and in the color of dysautonomia since I feel it has the most affect on my life. On the back, I plan to put “Don’t judge a disability by its visibility.”

graphic of blue shirt with words don't judge a disability by its visibility

And I encourage anyone else who wants to have their own visibility day to join me. Make your own shirt, or wear an awareness shirt you already have. Make you own on a site like CafePress or Zazzle. Buy iron-on letters or the print and iron t-shirt kits. Heck, take a Sharpie to a Goodwill shirt.

Whether you have dysautonomia, depression or dyslexia, Whether you have autism, anxiety or angina, I hope to see you repping your colors and your conditions on September 30th.

*Note: While not all invisible illness are an invisible disability, and vice versa, there is a lot of overlap. So for the purpose of my visibility day, I am including both of them.

JOIN THE CONVERSATION

Related to Dysautonomia

woman resting her head on her arm

The Song That Perfectly Describes Dysautonomia

Shouldn’t there really be an anthem for dysautonomia? I have postural orthostatic tachycardia syndrome (POTS) and last night while in the middle of an episode it hit me. I realized what the special song should be. I have found it! It speaks to so many of the conditions of this syndrome including body temperature regulation [...]
side view of teenage girl's face

The Social Implicatons of Leaving School Because of an Illness

Being 16 years old and sick is something that could not be described as anything other than, well, odd. I’ve spent the past year and a half unable to attend school regularly, which obviously put quite a dent in my education, but I was able to work through it thanks to a very cooperative school, [...]
Image of young woman working on laptop while sitting at her desk in modern office

The Challenges of Returning to Work After Being on Leave for Dysautonomia

As I drove into work that first day after my medical leave, I felt like a warrior returning to battle. I was stronger and I was smarter and I was ready to fight my invisible illness. Dysautonomia/postural orthostatic tachycardia syndrome (POTS) had knocked me down a couple of times, but it was not going to win [...]
two women having a conversation over coffee

My True Answer to 'How Are You, Really?' as Someone With a Chronic Illness

If I were to meet you, I’d smile. Maybe you’d ask me how I am. And my smile might wobble a little. It’s not a question I can easily answer. I don’t want to lie, but if I told you the truth of how I am, you might do that little sideways step and make [...]