The Frustration of Waiting for a Diagnosis with Chronic Illness

I feel like the worst part of the chronic illness journey is the waiting to find out exactly what's wrong. I saw my rhuemetologist last October after a year and a half wait, and was given a number of suspects, it might be this, that or all of the above etc. All I know so far is that I have Fibromyalgia, a hypermobility syndrome, my doctor says it seems like Ehlers-Danlos, my rhumey says I look more marfanoid. The referral waits in the UK are so long at the moment, I'm waiting for echocardiogram, pots testing. My bloods come back with low vit D, B12, low platelets and high Anti-CCP Antibodies but no one knows why yet. Lupus and Rhumatoid Arthritis are potential suspects. But potential doesn't really help at all, I don't want to worry over what might or not be. I see the specialist again next week, hoping for more answers but I'm so exhausted. 😞 Things seem to be getting worse rather than better, and I know I'm likely going to have a lot longer before I get my definite answers. A label isn't important as such, but at least if we know what it is, you can take the steps to the right kind of management or treatment options. I'm so grateful I'm finally getting help after being gaslighted by doctors for years, but it should have been recognised sooner, it's just sad and lonely right now. So scared damage is being done while I'm just waiting around for these tests.