Disbelief. Doubtfulness. Incredulity. Skepticism. Sometimes even suspicion.
These words describe the reactions – that I’ve felt, heard, seen, and sensed – to parts of my CRPS patient journey.
Not from my family or friends, or even from acquaintances or colleagues who know me fairly well. Disbelief from within our healthcare systems, from professionals whose role is to help patients.
I’m not talking about disbelief in terms of the disease itself, nor of its signs and symptoms, but rather of my patient experience. Of what I’m doing, when the expectation is that a CRPS patient is incapable of doing “X”.
A good example is cycling. My CRPS, for some reason, spared my thumb and my thenar eminence. That sounds like a character out of a Harry Potter novel, but it’s simply the somewhat rounded fleshy area at the base of the thumb, where it joins the hand.
I was diagnosed in May, which is the start of the real cycling season here in Montreal. Each time my husband went out on his bike, I’d be envious – if not downright jealous.
So I kept asking my treating physician – at that point a hospital anaesthesiologist – when I’d be able to get out on my bike. His reply was always “Not yet”, but with no timeline for when I could even try.
So when he went away on vacation, out came my commuter bike. I can’t put any weight or pressure on my right hand or wrist, so I ride one-handed. I keep my right elbow bent, and my forearm turned so that it’s across my torso at waist height.
It took a while – months, really – for me to feel comfortable with my new one-handed riding technique – but I was back to doing something I truly love. You can read From patient to person for that story.
That was a while ago now, and cycling with CRPS has become part of my ‘new normal’ with this disease. It’s so central to my identity, that not riding – even in a limited way – simply isn’t an option for me.
But so many times – when I meet a new physician, nurse, or therapist – when I mention that I ride 20 km before work (and anywhere from 30 to 50 km on days off), I get that reaction of disbelief.
I’m bringing this up now, because of something I just read. To mark Remembrance Day each year (November 11th here in Canada), I buy a book about our military – or about someone who served in it. I was in the Air Force (reserve) a long while ago, and that experience tends to stay with a person.
This year my book choice was Jody Mitic’s “Unflinching: The Making of a Canadian Sniper”, about his own military experiences. It’s also the story of recovering from the loss of both his legs to amputation, due to an explosion.
In one portion of the book, he talks about a nurse who was concerned that he hadn’t had a bowel movement because he hadn’t asked for a bedpan. Jodi explains to her that he hadn’t asked for a bedpan because he’d gone to the bathroom by himself. From bed to wheelchair to toilet, and back again. Without help: “Because I don’t need anyone’s help with that.”(1)
The words Jody uses to describe the nurses’ reactions – when he demonstrated to a group of them how he’d used his upper body strength to move himself – are:
- “Taken aback”(1)
- “Amazement”(1)
- “I can’t believe you just did that”(1)
He continues:
I guess we’re not used to dealing with soldiers,” another one commented. That was true: they weren’t used to dealing with soldiers, who generally had a high fitness level, good upper-body strength and an ability to work around difficulties, especially physical ones.”(1)
I get a similar feeling with CRPS, that many physicians and therapists aren’t used to dealing with patients whose attitude is “I’ll find a way” – rather than “I can’t”.
And I wonder how much that healthcare attitude contributes to creating, or setting, limits on what individual patients might otherwise achieve. What if the approach used was instead “What can we help this patient accomplish?”…
Reference:
(1) Mitic, Jody. Unflinching: The Making of a Canadian Sniper. Simon & Schuster. May 2016. Pages 206-207 of 256. ISBN 9781476795119 (book).