The less you see, the less you know
It’s the end of Invisible Disabilities Awareness Week.
Why haven’t I posted sooner?
I am acutely aware of my three invisible autoimmune diseases (ulcerative colitis, MS and PSC), but forget that I could be a “poster girl” for disabilities awareness.
I don’t often think I have disabilities, but I do. It’s not denial. Having life-saving surgery at 11 years old that resulted in an ileostomy gave me a great appreciation for life. Gratitude is ingrained in my psyche.
I may be known for my sunny nature, but I still struggle. Most people don’t see this. Therein lies the problem with invisible disabilities. How can people understand what they don’t know?
If you can’t see it, how can it be real? If I had a dollar for every time I’ve heard “But, you don’t look sick,” I could go on a luxury shopping spree!
My outside often doesn’t match what is going on inside my body; overwhelming fatigue, weak muscles, tingles, nerve pain, loss of bladder control, and brain fog are just some of the invisible symptoms of my MS.
When I’m told, “You look so normal.” I usually laugh on the outside, but cringe as I think, “I AM normal, what is normal anyway?”
The ileostomy has been my normal for so long (43 of my 54 years) that it is easy to forget that things I have to plan for aren’t “the norm.” Buying clothes and swimsuits around the needs of my ostomy doesn’t feel like a big deal….anymore. It did when I first had my ostomy. The same can be said for swimming, sports, travel, and a long list of dietary restrictions.
Over the years, the emotional toll of “the bag” has been huge, and invisible. I think it is safe to say that we all know someone who has suffered from an invisible mental health challenge that has hindered their full participation in life; therefore, being a disability.
I was diagnosed with MS because I could no longer run without my leg dragging, or do the Stair Master. It is only today (as I type this) that I am thinking of this as a disability. There have been times that I missed running. Not for exercise, but when I wanted to play soccer or basketball with my son. Why didn’t I think of it as a disability? I focussed on what I could do, which is a lot.
But, it’s only by talking about invisible illnesses and disabilities that people can understand that you don’t have to be using a mobility aid, or have a visible difference, to be experiencing a myriad of difficult, and often invisible symptoms. Keeping a positive perspective is a choice, and not always easy.
Awareness Weeks are important. Helping people learn about what they don’t know is the first step to understanding and action. Empathy is not pity, it is support, acceptance and change.
There can be a lot going on behind a smiling face.