Just a short observation:
One thing I have noticed how utterly inadequate my vocabulary is, when I try to describe my daily problems to any of the doctors I have seen so far.
Now I may lack training the fine art of being a patient, but what I notice is that my doctors did not display much expertise in inquiring about these kinds of symptoms. Yeah, I have "unrefreshing sleep". Yeah, when I finally get up in the morning my muscles "ache" and feel "stiff". Yeah I feel "fatigued" even before I do something. Yeah, I have "a bit" of "short breath" when I actually do physical activity.
I tried once to convey to a doctor the impact these problems have on my life. Doctors don't like alarmism, I had to learn. Only people with visible disease signs are allowed to state that they are severely impacted by disease, it seemed to me.
Since then, I try to be dry and factual, but lacking a nuanced vocabulary, I get the feeling my doctors don't receive the message I have to transmit. And that they don't ask questions to get the nuances that are missing – e.g. "How strong is the shortness of breath?" or "How unrefreshing is your sleep?" – and don't offer anything in the way of nuanced vocabulary is a bad sign.
I guess one could talk about pain for hours – dull pain, diffuse pain, focal pain, burning pain, just a little pain, feeling like being crushed – but for symptoms related to fatigue? No such luck.
This is a problem that needs to be addressed.
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