In Which I See an OT and Come up against a Stereotype

I have swan necks. Several of them.

If you have no experience with RA, you’re probably looking like one big questionmark right now. A swan neck doesn’t just belong on a beautiful bird, but is also the name of a particular deformity common in people who having had acted, untreated RA. It looks like my index finger in this photo:

 

As I became more involved in the RA community online, I found a lot of people wearing some beautiful rings. It wasn’t just jewelry, it turns out, but something called a ring splint. They are particularly designed to help prevent finger deformities, such as swan necks.

This has never been brought up as an option for me. I’m not necessarily blaming my rheumatologists of the last 30 years — I don’t know when these types of splints were invented, so it may be a fairly recent option.

In my last appointment with my current rheumatologist, I asked for a referral to an occupational therapist (OT) for an assessment. Partly to check whether ring splints would be an option to prevent exacerbation of my swan necks, but also to see if I could find something to help my boutonniere deformity in my thumbs, plus the joint bending the opposite way of what it’s supposed to (not sure what they call that – Wrong, maybe?). When I do a lot of camera work they hurt. Referral in hand, I made an appointment.

And this is when the part of the experience that's blog fodder enters the picture.

I arrive in time for my appointment and am told I’m seeing someone other than the person with whom I was first booked (she’s left the agency). Nevermind, I’m not particular. The new person comes to get me and turns out to be quite… erm, youthful. Certainly, he has all the requirements and licenses, but he has that shiny, newly minted look. Again, nevermind — the newly minted are often extra eager and at times better than someone who’s been doing it for a while.

We have a seat – well, he has a seat, I come with one built in — and start to chat about the reason I’m there and my RA history. I explain that I’m a writer and photographer, talk about the deformities, and mention splints. As he proceeds through the intake forms, he asks a number of questions. Among which are the following:

OT: so, do you have any other hobbies?

Me: ….

After a moment of internal debate on exactly how much I’m going to challenge his stereotype about people with disabilities, I explain that writing and photography is how I make my living.

OT: oh, so you work with your hobbies?

Me: (small sigh) Well, I think they’re mostly work if you get paid for doing it. (Silently adding “sonny”)

Nevermind the fact that I thoroughly enjoy writing and photography. My point is that if I say I am a writer and a photographer, it implies that this is my profession, rather than something I putter with in my spare time.

And I do not think I am far off the mark when I believe that the wheelchair got in the way of him hearing that. Had I presented with the exact same issues, but without a wheelchair, I am pretty damn sure that any 50-something woman who, describing herself as “a writer and photographer,” would be assumed to HAVE A JOB!

Breathe… breathe….

After we have established that splints might have helped me 30 years ago, but wouldn’t now, he told me that one of the ways I could manage the situation would be to stop when something hurt and either rest or try to find another way of doing things.

Have you seen the wreckage that is my body, SONNY? Again, that was my internal voice, I'd given up on him. But I should add that if I stopped every time something hurt, I’d never do anything at all!

He continued the assessment, measuring this and that, mostly to fill out the time. After about half an hour, we said goodbye.

And then I paid $72 for the experience.