What those of us with invisible diseases want others to know
One form of ableism is saying, 'You don't look sick'
That which is visible can more easily be defined than that which is not.
Of course, while the contents of a book can be different from its cover, readers can usually gain a sense of what the book might be about just by looking it. The same cannot be said about invisible diseases.
Having an invisible illness like cystic fibrosis can open us patients up to judgment we wouldn’t receive if we were in a wheelchair or had some other identifying indicator that we had an illness.
A shocking experience
Many years ago, I sat at a local diner with my best friend. He’s Black, and I’m white. He’s tall and muscular, and I’m short and very much not muscular. We look like opposites, but we’ve been friends since the turn of the century.
As our food was served, I noticed someone staring at us to my left. We were fully aware that we looked like an unusual pairing, but it was nothing that would make anyone look at us for more than a couple seconds.
I had my pill box out so that I could take my medicine and commence eating my usual late-night helping of pancakes. As I was swallowing the pills, I noticed that a woman was still staring at me with what appeared to be an all-consuming rage.
“I wonder what her problem is and why she keeps staring at us,” I said.
“It’s simple, if you ask me,” my friend said. “I’m Black and you look like a drug addict. That’s not exactly a welcome sight to a lot of people.”
I’ve always understood racism and the subtleties that come with it, such as staring, whispering, or less-than-welcoming attitudes. But this was my first time understanding ableism and the subtleties that can come with it, such as staring and whispering.
I’d experienced ableism before, but it was more in my face. It was brash and confrontational. I’m sure I’d experienced subtle ableism before, too, but I wasn’t paying attention until that experience in the diner.
When you have a visible illness that might require a wheelchair or lead to hair loss or a change in skin tone, for example, I think it’s probably easier for people to be more sympathetic to you. They might tell you that they’re sorry for what you’re going through.
When you tell people you have an invisible illness, the results can be quite jarring. While they might be taken aback by the new information, since you don’t actually look sick, they’ll often shrug their shoulders and tell you that you’ll be OK or that you might not have an illness after all. Perhaps in their minds, you’re not in need of immediate assistance, so how bad could it be?
Of course, not everything involving cystic fibrosis is invisible. People who have low lung function might require oxygen just to get around. I’d even argue that taking pills is a sign that the disease isn’t actually invisible, but then again, I’m the one who has it.
Naturally, I want people with visible illnesses to receive the treatment and care that they deserve. But I also deserve the same respect and care. Of course, no one with an illness wants to be coddled all the time. We simply want to be seen as equals to those who are abled.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
Excellent article Will
Another great article Will, and of course, it reminds me of one of my experiences with invisible illness/disease. Your friend's comment enraged me because I know how true it is (nothing against him of course). At the beginning of my invisible illness, I developed fibromyalgia which made every inch of my body ache. One day I was very slowly climbing a staircase to get to my train for work when I sensed a a person behind me. So I stepped aside and let him pass as he seemed to be in a hurry. When I said "Excuse me, I'm sorry", he replied "You should be!" and hurried on, leaving me standing there with my mouth open in disbelief. Why was I so shocked? I don't know - I guess it wasn't the kindness I expected from someone. I can go on with other stories, but this is YOUR article, lol. So Will, we shall go on with our heads held high and continue taking our meds in public, all the while being thankful, I guess, that others are not so stricken. Love to read your articles! Love, Helen
I'm so sorry to hear about your experience! There can be some really cruel people in the world. My friend was just explaining her warped perspective. I can't fault his brutal honesty. I'd rather that than him softball me. Love you, too!
Thank you for sharing this important concept, Will. It;s experiences like these that make me wish those who judge could spend just one day (or less) in your shoes and they would realize the\ir error and become more compassionate and loving.
Thank you Sara!
Gisele F Lapointe
My idiopathic pulmonary fibrosis is not visible neither is my recently-diagnosed breast cancer, and by the way my daughter had cystic fibrosis. I know what you're talking about. We have to live with whatever comes our way.
Best of luck to you for dealing with breast cancer!