When there was a new Internist in the town, my mother took me to him.
When I was a child, I already had a few signs of ME/CFS; I fatigued easily, had sleep problem already, had difficult getting up in the morning due to fatigue, woke up in the morning with nausea, had constant pain in stomach, had constant severe canker sores, fainted several times in school assembly and/or in the heat, and etc…
While checking blood pressure, the Internist made me stand up quickly. Then, he diagnosed me with Dysautonomia. There was no treatment for it and he told me I would grow out of it one day.
Even as a child, I sensed stigma attached to the condition. It was grouped as hysteria or depression. People thought the cause of Dysautonomia was lack of discipline in life. *rolling my eyes*
After the diagnosis, we never go back to the Internist.
More than three decades later, the environment surrounding Dysautonomia hasn’t changed much…
I mentioned Dysautonomia during the last medical appointment. Sometimes, I need to mention it to explain my “unwellness”. I have no intention of asking for current diagnosis or “challenging” my caring Dr TL.
One way of diagnosing Dysautonomia is to stand up for a few minutes and check the change in blood pressure. He has done it several times already and none of them showed the valid change in blood pressure so far. I do not wish to waste his time anymore. And it makes me feel like I’m telling a lie…
I mentioned that Dysautonomia in people with ME/CFS are often delayed. They usually get diagnosed with tilt table test and they start showing symptoms after 30 min or so… Dr TL told me there is no place that has the tilt table facility in our region. I knew about it. We both knew that the test itself is very distressing.
Even there is such test available, he is reluctant sending me to the distressful test since there is no effective treatment for the condition. That was exactly my opinion.
I’m afraid the mention of Dysautonomia made him feel helpless or uncomfortable. I know he does not doubt about my opinion or how I feel. As a GP who is practising in Qld, there are lots of limitation what he can do for me. The limitation is none of his fault. It’s just government and/or system is too slow to find help/support for the particular condition(s).
I know he is feeling the same frustration as I am.