Is a Visible Illness Easier to Live With?
Six years ago I was diagnosed with Parkinson’s. For the first few years, I could pretty much hide it most of the time and would have considered it almost an invisible condition. Then, 2 years ago, my neck inexplicably dropped making it instantly a visible disability.
I have been mulling this over in my head. I can not decide whether life is easier or harder now that I’m dealing with something more tangible and identifiable. It has definitely changed my relationship with my condition. But the even more noticeable shift is in the relative amount of help and support strangers and friends offer me. People are slightly more knowledgeable and confident in how to respond to someone who has a neck brace or a walking stick or wheelchair. Less so when the person just looks a bit wobbly.
I wasn't the patient (this time)
A few weeks ago a close friend who has multiple sclerosis, but mostly has no visible symptoms, became exposed to some ammonia by mistake at a metalworking workshop. I managed to convince her that she should go to the hospital and that I would meet her there. We have a deal that we go with each other, and she’s sat with me on many occasions providing friendship and cake.
We approached the check-in window and the receptionist fixed his gaze on me. ‘How can we help.’ His face couldn’t have looked more baffled as my friend told the story of what had happened to her. I could visibly see him thinking ‘but her neck…' about me. And this was not an isolated incident. Three more doctors or staff members asked me how they could help, and when we finally got out of there one registrar even tried to discharge me!
I get it. My neck looks like I’ve very recently been in a car accident. Or had a run-in with a brick wall. And people want to try and fix it, apart from those that are supposed to be doing that and have as of yet failed and would probably rather not be having to try.
The pros and cons to a 'visible' illness
With the neck brace, I get offered seats on trains. I get helped with luggage. And on one occasion, I even got a free taxi home. It makes life strangely easier for me. But it is not without its annoyances or challenges obviously, the case above being a perfect example. Or the fact that well-meaning people keep helping me across roads I had no intention of crossing!
When I ‘just had Parkinson’s’, I could tell a taxi driver what I did for a job without them lecturing me on how I should find a nice man and give up working. Strangers did not randomly start praying for me in shopping centres. Dating was definitely easier!
So, I guess, in summary, I’m still torn. I want the recognition of my condition and the support and help from strangers I get from a visible condition. But with none of the fussing, confusion, or embarrassment that goes with it. That’s not much to ask, right?
Do you participate in a support group for PD?