No theme today, just some left-overs that are too good to throw out, but not quite enough for a full meal.
First, I’ve heard from a few folks recently, some who had similar experiences to what I described, some who had different ones, and I really appreciate the feedback. It’s useful to know the whole range of the community’s experiences.
Second, if you’re ready to start learning about the patient experience in clinical trials for gene therapy (in the rare disease context), there’s a link to a workshop sponsored by the FDA’s Center for Biologic Evaluation and Review here.
Third, I recently heard from a patient who had ruptured their biceps tendon (that sounds terrible), and there doesn’t seem to be much available in the way of treatment, especially for older patients. It got me to wondering how common that injury was in the XLH (and autosomal) community. It makes sense that we’d be at risk for it, since it’s basically a separation at the spot where the tendon and the bone meet. That’s where much of our calcification happens, and calcification is a sign of underlying weakness that needs shoring up, so we know those connections are inherently problematic. I’d love to know how common these tendon ruptures are. Or maybe they’re not common, because the calcification, while restricting range of motion, at least keeps the tendon from pulling away from the bone?
And finally, I’m just starting to think about a topic for a future blog/newsletter: the challenges of coping with seeing a new clinician, and I’d love your input. I know I’m not alone in having anxiety about seeing a new health care provider, whether for primary care or in a specialty. I was recently referred to a new-to-me endocrinologist for a thyroid issue, and I was cranky and anxious for two weeks before the appointment, but as it turned out, she was excellent, in terms of both her expertise and her engagement with me. She listened attentively when I talked and asked for my reactions to the treatment options she laid out. I had another good experience with a provider-transition recently when the outgoing health care provider personally introduced me to the new provider, which smoothed over the awkwardness of my having to explain to a stranger that I really do know a great deal about my rare disorder and, no matter how weird the disorder sounds, I’m really not just making things up or parrotting something from an unreliable internet source!
Not all of my new-provider experiences have been great, though, which is why the prospect of seeing a new clinician always makes me so anxious. What about you? Do you have any good coping tips for dealing with that anxiety? I’m still trying to find a good way to say, “Look, I know way more about XLH than you possibly could, and I don’t expect you to know anything about it, because it’s rare and I’m your only patient who has it, so please don’t try to fake it.” I’d also like a good way to say “I don’t want to talk about my XLH, because it’s not relevant to why I’m here today,” and not sound combative from the outset. Or simply, “This is what you need to know about my XLH in order to treat [whatever non-XLH issue I have].”
And then there are times when I need to be prepared to say, “I’m leaving now and never coming back because you are wildly disrespectful to patients.” I guess there’s no need to be polite if I’m thinking this last option, right? I can always just stand up and leave. Sometimes it helps to remind myself that I do have that option. Too often, I feel trapped, when it’s just social expectations keeping me there, and my health (both physical and emotional) is more important than politeness.
Sometimes I daydream about having a medical alert bracelet that says “She really does know what she’s talking about, so you need to listen to her.” Except it would have to be signed by someone in the medical community that would make other health care providers pay attention. Might even need to be someone famous, I suppose, and that’s a problem with having a rare disorder — the people who are “famous” in our community generally aren’t well known outside of it.
So what’s your solution (fantasy or practical) to new-healthcare-provider (or old-provider) anxiety?
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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