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.
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?
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?
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!
And then I paid $72 for the experience.
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Hello Lene,
I'm sorry you had a bad experience with OT. As an OT myself, I know we try to be focused on the patients goals and be holistic about their needs. I hope you have a better experience in the future!
I'm so disappointed that you got a “SONNY” OT who vcould not look at you instead of the wheelchair. Obnoxios too, it seems.
What a disappointing experience. All of my OT encounters so far have been through The Arthritis Society, and I was hoping this was not their new Toronto OT. Sounds as though it wasn't. Phew
Where does he get off calling your occupations hobbies? I thought that OTs were all about enabling people to engage in their occupations, whatever they may be. He must have missed that section of the curriculum.
I hope your next OT experience is better
Annette
I have to say, I admire your self control – I think after the first couple, I'd have been saying exactly what I was thinking. I've been in that boat too – minus the photography. I'm a writer, and at various times with different medicos, I've had almost identical conversations. It sucks!
As sucky and dissapointing an appointment as this was it does raise the very real reality that people are not being referred to an OT before the RA damage is done. I was lucky in that Annette from above was kind enough to mention ring splints to me while my finger damage was still at the stage where splints would prevent it from getting worse. I then asked for a referral to an OT, something none of my many rheumatologists over the years had completely failed to even mention. I was also lucky in that my OT is an absolute darling and promptly gave me some plastic ring splints and hand exercises and checked regularly as to how I was doing. I however hated the plastic, flesh coloured splints from the NHS and they spent most of their time with me in a drawer instead of on my fingers. It was at this point that we found a local jeweller who was able to make me the most beautiful and functional gold splints that have since lived on 5 of my fingers 24/7/365. My fingers are now protected from dropping further (hyperextention & swan necks.)
It seems that many of our rheumies need educating in prevention rather than cure (joint replacements), & should be referring us to an OT as par for the course in the early years of RA damage occuring.
Hi Lene,
I've had similar experiences here, which really stink and leave me frustrated and feeling like it is hard to find the quality care I need. I hope you succeed in finding someone more experienced and able to see past preconceptions about those of us in wheelchairs.
I've had RA since I was 2 (1987) and was given splints for everything as a child, each night I was strapped in with leg, arm and hand splints and a neck brace. As a result of the over splinting I can't touch my face with my right arm.
As soon as I had a voice to say NO (aged ~12/13) I've been free.
I used pillows to keep joints in place/comfortable.
I've found marrying an Engineer a lot more useful than any OT I've met. (He's made a lot of modifications whilst still keeping my home homey)
The word splint still raises my heart rate with terror.
I work in allied health now and had an OT I work with say Splints for RA is not best practice. I'd believe that.