Living with a rare disease means choosing to trust your doctors
When you have a rare disease like SMA, there comes a point when you have to consciously choose to trust your doctors.
Luckily for me, I grew up with a robust medical team. I had access to a variety of well-renowned medical systems, including my beloved Gillette Children’s, M Health Fairview, Children’s Hospital, and even Mayo Clinic. My pediatrician was not familiar with SMA, but learned everything she could in the hopes of providing the correct treatment. Things weren’t perfect, but for the most part, I had it pretty dang good.
The result was that, as a child, I trusted my doctors implicitly. Why wouldn’t I? They’d never steered me wrong. In fact, I can’t think of a single mistake made by my medical team until I was in my 20s, and even then, there was no way to know I’d react abnormally to a certain medication.
The problem, though, is that when you live with a rare disease, there comes a point when you have to develop a healthy mistrust of your doctors. This isn’t to say you take their instructions lightly; if they tell you to do something, you do it. But your typical family doctor will probably know next to nothing about SMA. This means that, every time you see them, a voice in the back of your head may remind you less than gently to take everything they say with a grain of salt. They mean well. Of course they do. But when it comes to SMA, meaning well just doesn’t cut it.
Learning to second-guess
I’ve discovered this firsthand. Once, when I showed up at a hospital with a clogged feeding tube, I waited the entire day to be seen. My problem wasn’t an emergency, or so the triage team thought. What they didn’t know is that, without food and water, folks with SMA deteriorate rapidly, to the point of developing metabolic acidosis. To put it simply, my body was filling with acid.
I don’t blame them for not knowing. I didn’t know myself! But that fiasco completely changed my relationship with my health. Every time I see a doctor nowadays, I find myself second-guessing everything they say. It isn’t conscious. I don’t mean to. It just happens — even with those I do trust, like the medical professionals who have proven themselves time and again to be familiar with SMA. They’re smart people. They know what they’re doing. I believe they know what’s best, that they’re looking out for me even when my brain says otherwise.
But the easy trust of my childhood is gone.
Folks with rare diseases generally need to advocate for themselves. I wish that wasn’t the case. I wish every medical professional had in-depth knowledge of all the weird and wonderful conditions we bring to the table. But rare diseases are — you guessed it — rare. Part of advocating for yourself is recognizing that not everyone will understand the complex web of context that surrounds SMA.
That knowledge, of course, can seriously mess with your head if you’re not careful. And when you have anxiety like me, well, you can imagine the chaos going on inside my head every time my body decides to throw a tantrum, which is disturbingly often.
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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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