Family don’t understand my condition

HayleyL95

I’m 24 and I have arthritis and fibromyalgia and CFS my mum and sister don’t understand how I feel and they both know I have these conditions I’ve told them many times before how it make me feel being in pain every day 24 hours a day. No sleep no rest at all.
I’m struggling does anyone else feel like this. And what can I do to help myself feel better

numptynora

Hello Hayley, I feel for you. When I was first diagnosed, my Rheumy gave me loads of leaflets, I then gave these to various members of my family to read, (it saved me having to keep explaining how it feels having to keep repeating myself) it was a great help and my family members can accept when I say no, I really do mean no. But even now, I have one friend that just 'doesn't get it' and keep trying to push me into doing things that are just not possible in the way I used to be able.....hey ho!

I'm not young but I can empathise with you

czkd

Hi Hayley. I would have hoped that your mum and sister of all people would have tried to understand where you are coming from better. However if you don't experience something personally it doesn't give them the inside view. They can sympathise but not fully understand.
On my very rare bad days I can hardly move. My family are great and help no end but the understanding still isn't there. My mum has arthritis too so does have that personal understanding.
Maybe you should try and explain the pain in terms of something they could feel themselves which might make them understand how bad it is?
Thinking of you. Please let me know how you get on. I'm new on here.

Wallen50

Hi, I was 19 when I found out about my arthritis and I'm not sure anyone around me really got what I was experiencing. I'd like to say that as i have got older (now 34) that this has improved but I'm afraid it hasn't. Because there is no bruises or broken bones on show people seem to struggle to realise the pain your experiencing. I am quite lucky, I have quite a few good days and as I've got older I've learnt to manage the pain better, the down side to this is that when I have bad days it's like people have forgotten that I even have arthritis at all. The good news is that you will learn to deal with it, we are stronger than we realise and there is always a place here where you can talk to those that do understand x

Parlicoot

Hi @Wallen50, welcome to the forum 😊

Nice to meet you! You've said that while you've gotten better over the years at managing the pain and struggles of Arthritis better, that means that when it does get harder then people don't necessarily remember that you are ill.

A lot of people on the forums have similar thoughts, especially about the good/bad day problem. There's a discussion here about the "Boom and Bust" cycle of chronic illnesses which may be appropriate:

https://community.versusarthritis.org/discussion/52369/boom-and-bust

There are also various stories on the Versus Arthritis site which might help you feel less alone, or be a place you can send friends or family to have a look and see what other people (not just you) have said about living with Arthritis. An example would be:

https://www.versusarthritis.org/news/2019/august/i-have-support-from-my-friends-and-family-but-i-still-don-t-feel-that-anyone-truly-understands/

If you would like to talk to people who do understand our helpline is here for you. They are open Monday – Friday, 9:00am – 8:00pm on 0800 5200 520. And of course, there's this wonderful forum full of friendly people who have similar issues and will understand. Have a look around and join in a couple of conversations, see where that takes you ☺️

Lovely to meet you,

Shell xxx