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BuckMoon

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Hi,
I'm 24 and recently diagnosed with fibro after 10+ years of back n forth clinic visits, non-conclusive tests and scans etc.
I've found this forum quite useful and just wanted to ask how do people view you once you've told them?
I've only told my parents so far and imagine I would only tell my future employer if I can find a job I could work comfortably. I just wondered if you share with friends or colleagues or w/e is there a shift? Do they try to like take care of you? Can it be awkward or weird at first? Is it often misunderstood?
Thanks in advance.
 
Hi,
I'm 24 and recently diagnosed with fibro after 10+ years of back n forth clinic visits, non-conclusive tests and scans etc.
I've found this forum quite useful and just wanted to ask how do people view you once you've told them?
I've only told my parents so far and imagine I would only tell my future employer if I can find a job I could work comfortably. I just wondered if you share with friends or colleagues or w/e is there a shift? Do they try to like take care of you? Can it be awkward or weird at first? Is it often misunderstood?
Thanks in advance.
hello BuckMoon and welcome to the forum! I hope you find a community here that can be your online support system. We are all here to help each other out and share our experiences. Ask any questions you have and someone (or many someones) will do their best to help.

Everyone's experience with telling people about FM is different, and it will be different with different people you tell. Some will try to take care of you. This may be something you welcome and it may not be.

Unfortunately some will not believe you, and may say hurtful things to you about it. People here have had someone say to them that they are making it up to get attention, that they are lazy, and other terrible and untrue things. Brace yourself for that and don't tell people who you even think might be unsympathetic unless you have to.

Other people will immediately start telling you about a "CURE" they know about, or tell you that "all you have to do is....." and may be angry or frustrated when you don't follow their advice. Brace yourself for that, and arm yourself with a few handy phrases to use, like "OK, well, I may check that out. right now I am trying other things".

Others may pretend to be sympathetic but really they are not. You will get all kinds of reactions.

I have been living with FM for years and there are people who have known me all along that do not know because there has never been a need to tell them and I tend not to mention it if there is no need to. Personally I prefer for people not to know so that they only see me, not someone with FM.
 
Thanks for taking the time to respond sunkacola.

I, too, would prefer to be seen purely for who I am rather than have someone's idea of a very complex 'syndrome'(?) attached to me. After all their interpretation will always miss the mark I suppose.

I thought a diagnosis would help me be understood more as I could say 'I have...' rather than trying to have someone understand my 1001 symptoms but it seems the diagnosis I have landed on is just as confusing for people as my symptoms themselves.

I just don't want any sympathy and as such have always dealt with my symptoms as quietly as possible and often downplay them too. However, if people are around me long enough or astute enough they might pick up on the fact that I am in pain but I don't want this to be like a character trait people hold to me if that makes sense?

I think I will just tell people as and when is necessary like yourself, hence I would tell a future employer or something. Sharing isn't my strong suit anyway (I was quite nervous to hop on here and talk about it) and I'd hate the thought that people might be concerned for me.

Thanks again for replying.
 
You are welcome. I hope that this forum will be helpful to you in many ways.
 
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!
 
Hi Jemima, thanks for taking the time to respond.

I totally get your point of view and I hoped I would land on a more concrete diagnosis so that I could simply say 'I have...' and then be treated and understood but it seems that's not the case with FM.

In the past I have been quite open about my symptoms (some suggested FM but I refuted this and didn't want to settle until clinically diagnosed) so I guess I've already had the conversations in a sense and I've met some sceptics and care-givers and I guess I decided I didn't have the energy to deal with this and my energy was better spent quietly coping or at least trying to. I thought a diagnosis would put an end to this but with FM it still needs that so I imagine I'll tell people on a need-to-know basis. Or be very selective in who I tell at least.

I appreciate hearing your perspective, thanks again for replying.
 
Just want to say that Jemima's post above is excellent, and she touches on some things that I did not mention, but with which I agree whole-heartedly. Especially the concept of being able to deal with something once you accept that it is there.

I sometimes have had a person think I am exaggerating because I don't stay in bed or on the couch all the time. I go out and I hike and go to dance class (when available....darn covid!) and I do activities with my dogs (including dancing with them) and so on. So I couldn't possibly have a chronic pain condition.

But I like to say to these people that individuals who only have one leg run in marathons all the time, which only a few decades ago would have been considered impossible. People with cancer can and often do still live full lives. And you can learn to manage fibromyalgia in a way that allows you to have a full life on many days, except for the times you are in a full flare.

When the knowledge of how to manage something is present and the person with the condition has the right attitude toward it, anyone can do almost anything. As I have said before, sometimes we need to find a different way to do it, but if we want to we can manage it.
 
people will immediately start telling you about a "CURE" they know about,
An acquaintance often seemed so worried I wasn't accepting his cure-idea that he was losing sleep. His problem, not mine....
hate the thought that people might be concerned for me.
Rare enough - worry about it when & if it ever happens! 😎 😏
open about my symptoms
That'd be me. I talk quite a bit about it & like the challenge of sometimes trying to put it in 1-4 words, e.g. "still targeting 40%".
individuals who only have one leg run in marathons all the time
Niiiiice one! 🤗
 
There was a fantastic post here somewhere. It was a letter to people explaining fibro. Maybe someone remembers. My husband read it and thought it explained alot. I'll try to find it but I'm terrible with this phone, sorry.
 
Found it but don't know how to post here. It's fibromyalgia letter, maybe you can search.
 

Or I think Miserandino's Spoon Theory (wikipedia and elsewhere) is something I'd prefer.
 
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