At 6:30am, I piled my body into my husband’s mini cooper to take him to work (my car was being fixed). I’d not driven it before and the big surprise came when I remembered why I no longer get a manual transmission car. Oh, that’s right. I have very numb feet and can’t feel a clutch (at least not easily!)
I have a habit of forgetting about my “disabilities” when they don’t get in the way — they’re not visible.
When I read Lisa Copen’s article online, Can Those with an Invisible Illness Park in the Blue Spots without seeing Red, it brought it all back. Living with invisible disease can really be a crazy making experience, if you let it.
I got a HP placard in 1990 (in those days it was plates or placard, nothing hanging) and I hated using it — not because people would think badly of me for being disabled but because I knew from the looks that they thought I was a fraud.
The worst was when a man yelled at me as I was taking my daughter out of her car seat. She heard his words and burst into tears. She asked me why he called me such bad names and I didn’t have a response. (How do you tell a 4 year old that the world is full of idiots?)
Another time, I was on the faculty at Boston University and I had to go through hoops to get HP parking near my office. The parking administrator made me get a doctor’s note to verify I couldn’t walk a certain distance! Yuch.
Now, I’ll admit something I don’t like to share: there are times that I hobbled so I’d look “sick”. Who was I fooling? I don’t use the HP anymore. I don’t need it. And, I sure am glad.
Rosalind
So, check this out: National Invisible Chronic Illness Awareness Week Sept. 10 - 17. And, I’ll be speaking about my favorite topic: Workplace Success with chronic illness on Sept. 10 at 6:00pm ET. Please, join me there!
After struggling with the occasional times when I was either too tired to walk or my joints were painful, since 1993, I asked for and received a HP hanging placard last year. At first I did feel a little guilty using it but not anymore. Yes I do get “looks” but I know I’m not a fraud and yes I do find myself hobbling a little sometimes to “prove” I am worthy of the placard. But it’s worth it to have the ability to take care of myself when I need to. When I’m feeling well I don’t usually use the placard.
Hooray for you, Diana. I, frankly, think we shouldn’t feel any guilt at all. Guilt means you’re doing something wrong and you aren’t. You’re using a service that is meant to be used by folks like us. I think it’s sad that we have to feel like frauds — but it’s the nature of the beast of living iwth invisible ci.
years ago, a colleague of mine wrote a great fact sheet on getting a placard/plate with a disability - and much of it was based on her own experinces as a person with CFIDs. Check it out: http://tinyurl.com/2bcl9v
Yes, that’s a great resource. Thanks Kassie.
Thanks so much, Rosalind, for this wonderful blog and sharing your experience! It was comforting to me too to read about your “mom experiences.”
Lisa Copen
Glad you found this, Lisa. Being a mom with illness isn’t always easy - but then I don’t think being a mom with health is easy either. Rosalind