Who and how much to tell?

[Bookworm55]

I was just wondering how people on here decide how much ( or whether) to tell acquaintances about their condition?

Obviously my close family, and friends that I’m regularly in contact with, know as do some of those who were around me at diagnosis seven years ago.

However, as we know, RA is a complicated disease and the symptoms can vary from day to day or even hour to hour and I’m never sure exactly how much to explain to other people. I don’t want them to think I’m a flake when I turn down invitations but on the other hand I am very aware of people’s eyes glazing over if I’ve given too much info!

I’m aware that this could be even more of a problem for younger sufferers (I’m in my late 60s) as quite a few of my contemporaries have aches and pains, chronic conditions and/ or tire easily..

What do others do?

[lily2003]

I generally don't tell anyone anymore, even friends. My close friends and close family know, but otherwise, I'd just as soon not talk about it unless they suddenly say they have an autoimmune.

However, I'm so fortunate right now (knock on any object around me) that I'm in "remission" and don't have too many symptoms that bring it front of mind, like, say, the aching hands that I had before the MTX kicked in. Back then (fall 2019, I'm thinking of), I was at a group meeting and it was so hard to write with a pen. It was even hard to hold the steering wheel to drive to that meeting. I remember telling someone at that meeting who didn't really need to know. That was the beginning of me rethinking who to tell.

And actually there weren't too many of those incidents before the pandemic hit and then I wasn't around ppl that much to chit chat. By the time the pandemic was more or less over, I was in remission.

Also, like you, Bookworm55, I'm at the age where many ppl I'd be chatting with have this or that. As my best friend says, "We all get something." (She's very pragmatic if a bit grim!)

[welsh12 in reply to lily2003]

I agree

[medway-lady in reply to lily2003]

So true.

[Wobbies]

I tell people as little as possible on the basis that they really don't want to know. They just hear the word arthritis and think it is a few aches and pains. When I last saw my rheumy he said "It is a very lonely place to be" and I think he is right. Have onlly 2 friends left and those 2 have been with me all my life from age 11 so they knew me pre-disease. For various reasons, we rarely see each other but keep in contact.

[Bookworm55 in reply to Wobbies]

Yes I think it can be a lonely place to be which is why forums like this are so important. That is probably true of most or even all chronic conditions, especially autoimmune ones as they seem to affect everyone differently and can have a wide range of symptoms. I find the fatigue the most difficult to explain - especially when it comes on suddenly and all I can do is lie down! I do try and pace myself but of course this is not always possible.

[Ruth12345 in reply to Bookworm55]

I couldn't agree more 🌻

[Mostmoses]

Well, Though I don’t believe in sharing personal stuff in my workplace in general, I’m a teacher and I do briefly inform my new students. I choose to do this because (as I tell them) it impacts my work with them a bit. I sit far from students by a window and wear a mask for office meetings. Sometimes it is also obvious that I’m slow-moving. Management at the institute are also aware. Everyone has been matter-of-fact and supportive over the three years since my diagnosis, and of course I am not unique-others also have health challenges here. That said, I have withdrawn a bit from some of my friends at times, when I felt that I didn’t want to burden them with details.

[oldtimer2]

The common greeting around here is' How are you?' (in English or Welsh).

How to answer this? People are not really asking, it's just a greeting, but I can hardly say 'Fine, how are you?' So I usally say ' Don't ask', or 'Still breathing' or (if I'm having a bad day) 'Terrible. How are you?'

But sometimes people actually ask 'What's wrong with you then?' - usually younger people who haven't had the constant drip of their contempories' illnesses. Then I say 'I've got an autoimmune disease - my body defences attack my own body and make it ill.'

If they are interested then I can explain further...and I have given a few talks to groups about immunity and what happens when it goes wrong. The more people who know about it the better!

The worst thing to say is that you have 'arthritis'. I wish I had a pound for every time I have been advised to take various alternative therapies or to exercise more etc!

[Thingybob]

I made the mistake of telling ' friends' (acquaintances really) about it, when i was first diagnosed. Maybe it was part of me coming to terms with it, kind of saying it out loud helped me to realise it was true, who knows. I soon found out who my real friends were as many drifted away as if they were scared they would catch it . I didnt really say too much , just the basics but hey 🤷‍♀️.My real friends ( 2 who have known for years ) just get on with it really.

But yeah, at the end of the day it is lonely, as its just us who deal with it individually no matter how supportive family, partners etc are . Its our own heads we have to get round it somehow too. Places like this forum are so supportive in that 🙂