Hi BuckMoon,
Welcome here
I totally agree with Sunkacola that responses can be varied - as can the way that each of us feel about those changing dynamics, but I can tell you my own experiences!
I am definitely of the mindset that I'd rather be able to say "I have...", because otherwise, I find I constantly have to put on a brave face and pretend to be fine, which is isolating, or I have to make excuses over and over again for not feeling well enough to behave in the way others expect me to. I have chosen to be very open about my health issues - telling friends and colleagues (I work freelance, but interact with quite a lot of different people) what's going on in any case where my health impacts our interactions.
My dominant experience with just about everyone has been that they just couldn't grasp the idea of a chronic condition right away. Most people would constantly ask if I was feeling better, say something like "
I'm sure you'll feel better soon", or simply forget all together! It took me a while to find the right vocabulary to explain what fibromyalgia is in a way that people would fully get and manage to retain. I found that this meant explaining in a calm and positive voice - no pity or duty-of-care required - but using quite strong language. Saying clearly that fibromyalgia is a condition presenting as body-wide pain, fatigue, cognitive issues, and depression. That it's incurable, and I will have it for the rest of my life. For those particularly slow on the uptake, I have a stash of memes and articles that I can show them, to help the penny drop!
A few people have responded by going home and Googling fibromyalgia, and then telling me everything I need to do to "fix" myself. I do my best to be patient with these people! The advancements in research only this year have been helpful - as now I say something along the lines of: "
Well, understanding of the condition is changing really fast - only earlier this year they identified that it is likely an autoimmune condition. Different sufferers find that different approaches suit them better or worse, and symptom management is a case of layering strategies. I am watching the developments." Of course, on a day when you just can't be bothered, Sunkacola's "
I may check that out..." is also a great go-to!
If you do decide to tell people, it can be helpful to think about how to describe your symptoms. People often ask me what it feels like. My usual answers are that it feels like I have bad flu and got beaten up really badly the night before. When a flare gets really bad, it can feel like I have iron bars hammered through my joints, a light touch can be too much, and my memory crashes like a computer! A bit shocking? Maybe! But they get the picture - and I always say it in a calm way, finishing up with "
it's amazing how much you can deal with when you just accept that its there." I do think that people panic when they don't know how to deal with what we say, but when we make clear that we don't need anything from them but simple understanding, it can be really helpful - at least, that's my own perspective.
Fundamentally, we are each on our own personal journey, so doing what feels the most comfortable to you is what counts!