After dealing with me for 22 years, my personal care physician probably has a pretty good idea of what I can and can’t do. My neurologist, an expert in Friedreich’s ataxia, likely does, too.
Other than that, I don’t think most of my doctors understand what I am dealing with and why it might be extra hard to turn on a sleep machine or take medicines that are known to cause constipation or why surgery might not be the best option for me or why hearing aids might not work well for me.
It’s not that I don’t speak up. I think they don’t hear, at least not very well.
Some do. My optician said he didn’t know if I could have laser surgery with my nystagmus. But, he continued, it wouldn’t help you not wear glasses, which I told him was my goal. You’d still need reading glasses, he added.
But the ones who don’t hear well are little different from society at large.
We can deal with someone with one disability, but adding another in, even if they are related, is dicey.
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