I can tell you for me it was a relief. I had symptoms for years but being undiagnosed is difficult. You have to deal with it all but have no treatment, no label, and no real understanding of what you should do.
I was coping well at the time after having gone through a few years of difficulty coping. I didn’t have chronic migraines yet. I had learned to pace and moderate but I wasn’t in the workforce yet, so didn’t have that additional stressor on me. So I was doing well coping–wise with some Unknown conditions. I speculated it was fibromyalgia. Many things had been ruled out, after all.
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But the Label mattered to me. I wanted to know what was wrong. What to do about it. If there was Anything I could do about it. I needed the official diagnosis. However, I pretty much knew by then what it was. And by then my father had already been diagnosed. But you need the label to give doctors. Otherwise, it is all Doubt. It is all ‘maybe it is in your head’. You need someone to make it real for them.
Turns out, the rheumatologist told me I was ‘too young for medication’ so it would be years before I even explored any actual medications for fibromyalgia. And this was long before Lyrica, Cymbalta, and Savella existed. So yeah, that ‘too young’ stigma was a real pain, literally. Especially when the migraines complicated my pain and coping once they arrived and continued to get worse over time.
Still, once you have the Official Diagnosis you can move on to treatment. To what may or may not work for you. You have a general idea of what you are dealing with long-term… which for me, was wildly wrong since I had no Idea so many comorbid could crop up. Or that brain fog could be such a massive problem all on its own.
But you can conceive of coping with it and seeing some sort of future with it, once it is known. But at the same time, you are aware it is chronic and it isn’t going anywhere. And that there really isn’t much known about it or really any effective treatment. This means a lot of the coping burden falls on us. And a long future of trial and error. And realizations on how worse it can get.
Still, I felt relief mostly. To have the name put to the illness. Finally. After so many years. Just Finally.
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