I hate feeling so embarrassed about my conditions.

[fuzzpig]

Basically I just wish I could be more open about my conditions (CFS/ME and POTS) but I feel hideously embarrassed and vulnerable.

I think it's because when I had my first severe phase of the ME in 2012, I missed a lot of work, was going through disciplinaries and always seemed to be crying, I was so scared of losing my job, the odd rant on FB etc. It was an incredibly humiliating period of my life, and I've not got over it.

I feel like I went too far IYSWIM? Like if I bring it up again people will just roll their eyes and be like "oh, this again". I've been ok for ages and so I've not been talking about it, not at work, or among friends, or even on FB.

And now I want to, because I am definitely heading for a flare up. But I can't. I am terrified even of asking to take some of my annual leave (to try and stop the flare up worsening) because it means bringing it up again.

I even tried putting something on FB just now, saying briefly that I was having a flare up, and couldn't do it, I kept rewriting it and eventually just hit Cancel.

Not really sure what the point of this thread is, perhaps it's just because I can actually be myself here and I can't anywhere else.

BTW I never ranted unprofessionally or about managers or anything, didn't even mention work, more stuff like being pissed off when I had to give up my OU degree etc.

So nothing that would ever get me in trouble IYSWIM. But I feel so raw and embarrassed I ever wrote stuff like that even though it was 2 years ago.

It all makes me want to hide away. This makes me really anxious and withdrawn and the anxiety is so exhausting it makes my health worse... never ending cycle :(

It sounds really hard. Do you have much support because it sounds like you would benefit more from a long, teary supportive, real conversation than from the platitudes you will get from FB.

You need to be kind to yourself, think the advice you would give a friend in your situation and avoid the kind of emotional outburst you will be embarrassed by later.

Coming to terms with an illness is a long, hard process and people who matter will understand. I always found taking a little control, actively deciding to rest up and buying books to read or box sets for the rest made it less upsetting. I have RA, so similar in terms of flare ups. If I spoke to people calmly and didn't push myself everything passes without incident or judgement (except positive ones about how well I cope) at work.

Be kind to yourself and before you know it this flare will also have passed. Good luck

Also, you should see if your work has a disability service or occupational health, they would help.

Oh, fuzz That sounds miserable. If I knew you, I'd want to know you were struggling, and heading for a flare up, so I didn't put too much on you, or knew to make offers for meeting up which were easy to cancel if you had had a tough day.

If you think the flare up is inevitable, however hard it might be, I think you need to say something - how understanding is your manager? and I say this as someone who burst into tears in her managers office as she struggled on too long or a couple friends at work who would then be understanding when explanations for absence are required?

Can you ask for holiday without mentioning why? Day off to: buy some new clothes, meet your Mum for lunch, catch up with friends, got an appointment, fancy a long weekend.

We did a "personality types and how to adjust for them" course the other week. It made me realise that I have a personality type that makes me remember all the little things that others will forget, so I hold resentments that other people think are so minor they are forgotten almost as soon as they have happened. Might this be the case with you, and you are over thinking the response you might get from people?

I think I might have some insight into how you feel. A few years ago I had a relatively horrible time with mental illness. Work didn't handle it well, I was off for ages ( months) and everyone knew why.

As a result, when I eventually came back I felt totally defined by my illness, partly because of lots of well-meaning questions. Possibly a few less well - meaning questions from a few people.

That was about 9 years ago. I still work for the same employer and I still feel that a few people only see me in terms of that time, although I have never had performance problems since then, and have been promoted. I feel really embarrassed when I come across those people.

Sorry not to have any advice, but want you to know you're not alone.

I could have written your post . I have ME too and have also had Labyrithitis for 9 months..currently being investigated for thyroid issues. I'm really struggling and but just keep a lot of to myself..although I do talk to my partner. I get limited support at work and live in fear of being pulled up because I know I am just doing the bare minimum. I can never bring myself to even tell people and am just vague if people ask how I am. I am really fearful of people's reactions/judgements..I don't know really but its hard and I fully empathise. I hope you manag the to find a way to take some leave if that's what you need to do to stay wellish.

Thanks everyone

Feeling worse this morning but was then really chatty when I first arrived. Then regretted it because that makes me think people won't believe me if I feel crap later. The variability of ME and POTS is something that healthy people can't always understand!

You may be on to something with the personality type addicted - I have had an assessment for Aspergers although I came away with a preliminary diagnosis of OCD instead (never followed that up as I was too unwell physically) - either fit me well and it certainly does lead to dwelling on stuff as an aspect of my anxiety.

Back later as I'm starting work in a couple of minutes.