Support from friends and family

pianoforte

Hi all, I've got Ankylosing Spondiloarthritis. It's been diagnosed a year ago. I'm on medication and doing exercises. Feeling better but the pain & fatigue are there and It took me a while to realise that I need to adapt to it and live with this pain. As you all probably know, it's been difficult to accept it and I've had some really bad psychological moments. I've had support from a psychologist but I'm finding it difficult to get support from my surroundings. (Family & friends). A typical example: I'm a keen walker and have always walked long distances with friends at least once a week. Since the SA appeared, that's now 3 years ago, I'm finding it very painful to walk, even a short distance. Hips and ankles are hurting and it takes several days to recover. When I complain, even lightly, I do not feel supported. Typically, my partner gets annoyed and even some of my friends. I don't have the feeling I'm complaining constantly but I think when I mention my pain, I like to feel some kind of support. I'm now thinking that I'm probably not doing it in the right way, if there is a right way! What about you, dear all?

Arciere

I hear you and can relate to this hugely. The lack of empathy can be very, very frustrating. I don't blame anyone as such - I guess I’m just disappointed.

I try to remember that everyone is busy and has their own challenges, you know; “I’m ok, you’re ok”.

But I haven’t really found a solution.

My view is that some people are just more naturally supportive than others. I think it’s innate.

So I try and distance myself from those who are not supportive, or at least I try and manage my expectation as to how they will behave.

It’s been interesting to see how different people have reacted. I feel there are three side affects of this disease; physical pain and discomfort, fatigue and, the mental impact those two have. Feels kind of like carrying around a bag of pain all the time which is invisible to everyone else.

The only difference I’ve noticed in myself is that I am perhaps a little more selfish? Compared to how I used to be. Some might say I’m trying to look after myself first.

I am a people pleaser of sorts and I have found myself doing an activity or a chore, and then suffering for it and thinking - why am I doing this? It’s not for me and now it’s causing pain. So I’ve said no a bit more and sometimes I keep my mouth shut before offering to do or help something that would in all honesty be detrimental to me. That can be hard and like I say feels selfish.

It’s hard to change a lifetime’s point of view so there is a friction in this thinking.

So I hear you and I’m sorry that you’re not feeling supported.

Hope this helps

pianoforte

Many thanks Aciere for taking the time to give your views and comments on this matter. It's always comforting to read about other people who suffer from this condition.

"A bag of pain" that's it! When the mental pain adds up to the physical one this bag can be heavy!

I think we may feel we need more understanding and sympathy than people who don't suffer from arthritis. It's just how it is and as I'm having ups and downs, I do look for support and you're right perhaps one gets a bit more selfish. But I do fear I can really only rely on myself and built-up a stronger mental health. Hard work!

Best wishes.

poormary

Hi, I have rheumatoid arthritis and I have similar issues to you - people don’t understand how you feel. Even my family forget. I found this on line and put it in the family chat. I know it says RA but it probably applies to other chronic conditions:

My plan is to remind them when they forget that I have a chronic condition 🤣

Arciere

@poormary

That is brilliant.

poormary

Thanks @Arciere and @pianoforte

I think you’re right about some people being naturally more supportive than others. I have quite a few friends who ask how are you? It’s a difficult question to answer without going into detail or just saying Fine, thankyou. So they will get an answer but then, if we’re walking, they won’t choose an easier or shorter route- they just march on regardless. Maybe I expect too much of people? 🤔

pianoforte

Thank you for your comments!

Best wishes.