I am disabled. Both literally & legally. I am a disabled human being. I am not permanently in a wheelchair. I don’t always walk with a cane. I am not missing any limbs. I am not blind. I am able to drive. I am able to coach. I am able to walk. Yet, I am disabled. But if I can do all of these things, how in the world am I considered a disabled person? There’s a very simple answer to that question. Not all disabilities are visible.
That’s right. I actually have an invisible disability. You can’t see it, you wouldn’t know it by looking at me. But it’s there. And there isn’t a day that goes by that it doesn’t let me know, it’s still there. It’s still there and it’s never going away. But everyday doesn’t bring a limp or keep bed ridden. Actually most days I can walk around. Some days I can exercise. Somedays I can stand in line without feeling like I wanna rip my spine out. Then there are some days when all or one of those things may happen. There is never a pain free day, but some days are better than others. I don’t get to pick and choose when they happen. And when they do, you will never see it. Unless, you are walking around with X-Ray vision like, Superman. Yea, Superman would totally know that I have an invisible chronic illness. I’m going to take a wild guess and say that the average American is not of Kryptonian ancestry, so you wouldn’t know that I am disabled to look at me.
One would think that being disabled, but still being able to blend in with fully able bodied people is a great thing. No one wants the stares and a thousand questions every single day. Honestly, I don’t know if it’s better this way. There isn’t enough information and respect out there for people with invisible illnesses, especially young adults. I find that I am constantly having to defend my unhealthy life against hostile ignorance. Yes, hostile. I’ve been called lazy, retarded, liar, dramatic, entitled…the list goes on. I’ve been snickered at. I’ve been asked to show where I’m disabled. I’ve had nasty notes left on my car. I’ve been ignored. Most often people will say, “Oh my God! It’s just gonna take __ minutes. Suck it up! At least you’re not in a wheelchair!”. I’ve been told what I have is NOT a disability. So, let me explain what it is, I have.
I have Ankylosing Spondylitis Sacroiliitis. Quite a mouthful. It’s basically, Arthritis of the spine. Yea, that’s right…ARTH-RITIS of the SPIIIINE! Ouch, right?! Totally. Long term effects can be fusion of parts of the spine. Depending on the person, it can flare up things like your bowels and your eyes. Here is an example of a definition provided by the NIH: National Institute of Arthritis & Musculoskeletal and Skin Diseases:
Ankylosing spondylitis is a form of progressive arthritis due to chronic inflammation of the joints in the spine. Its name comes from the Greek words “ankylos,” meaning stiffening of a joint, and “spondylo,” meaning vertebra. Spondylitis refers to inflammation of the spine or one or more of the adjacent structures of the vertebrae.
The effects are long term and irreversible. My back pain is swift and severe. Before beginning the biologic, Remicade®, there were days I couldn’t get out of bed to take my baby to school because I couldn’t physically move. Length of standing time is often limited. Length of sitting is also limited. I am disabled. I have a challenge and limitation that prevents me from living a full life. So, often times when I am traveling, I need a wheelchair. And you would think that this would be easy enough…alas…it is not. But it wasn’t until this weekend that I hit my breaking point with the blanket of ignorance.
This past weekend I traveled to Chicago to attend the HealthEVoices presented by Janssen Biotech & Everyday Health. It’s an amazing conference I’ve been able to attend to help online advocates amplify their outreach through resources, tools and inspiration. When I travel, they reserve a wheelchair for me just in case I need it. Sometimes I use it, sometimes I don’t. Who knows when I’ll need it. Well, in the middle of the weekend at the conference, I began experiencing breath taking pain. I pushed through. But by the time I got to Sunday, I knew that traveling home was going to be tough. Chicago O’Hare International Airport has extremely long security lines and I couldn’t stand longer than 3 minutes before I started feeling the burning in my back. So, standing for 30-40 minutes was not an option. But apparently the staff at the American Airlines O’Hare terminal, felt a different way about MY disability.
I was ignored by the hospitality agents. I was told I shouldn’t sitting in the handicap section. I was told in the time I took to wait for a wheelchair, I could have been through the security line. I was asked why I thought I was disabled. I was told I didn’t look disabled. Eyes were rolled. I heard a snicker. People stared. I was completely shocked & utterly embarrassed. Due to complete ignorance and assumption, I was discriminated against. That’s what it was. discrimination. I didn’t look disabled, therefore, no one would help me. When I finally got to the plane and allowed to relax, I cried. Usually, ready for the moments of stares and other customers questioning my disability validity. But a staff member for a public service, questioning me? It was too much!
It’s time for education. It’s not about being politically correct or overly sensitive to other people. It’s about being educated and evolved enough to know that there are several different ways someone can be disabled. We all have flawed bodies, anything can prevent someone from living a full, healthy life. It can’t continue to happen. I am asking everyone to take the time to email their Congressional leaders, their Senate leaders, The ADA and The IDA. I know that I am not the only one who has experienced discrimination. Let’s make real change. You are not alone. A lot of online advocates have experienced this and it’s time to stand up. Advocate for yourself and let’s change the way we are not seen.
Let’s stop being invisible.