It feels like a lonely journey..

Sana

Hello there! I joined this community just a while ago. I actually started looking for one because of an incident.

So, I have AS with bilateral SI erosions and now all my other joints have started flaring too. I've been missing quite a bit of family gatherings and people often come back and ask me why I didn’t make it, even though I tell them why. People give shallow advice, but none of them bother to understand. They cannot comprehend how I got this illness and hence they often end up invalidating my pain. I got through it one **** at a time.

One day, I had a pain reliever bandage on me and people had come over that time. One person asked me if I had known earlier that everyone would come, so I put on this bandage to show. I just couldn’t take it anymore. I ran into a room and burst out crying. I just couldn’t take it anymore.
I felt defeated. I knew I needed to find people who could understand without having me tire myself out to explain everything.

Naomi33

Afternoon @Sana and welcome to the online community.

Sorry to hear your concerns but as you say unless you are going through it you do not understand.

I joined RA groups and find I feel understood and less self conscious and gain lots of knowledge of other peoples experiences.

Like you I wore supports on my elbows and hands and amazingly everyone was concerned so bizarre being an invisible disability frustrating at times.

The following link maybe of interest……

https://www.versusarthritis.org/news/2020/january/moving-more-with-the-escape-pain-programme/

Best wishes and you are not alone @Naomi33

frogmorton

Hi @Sana

Those aren't very nice people if they have belittled you and minimised your pain😡

Have you ever read this?

https://versusarthritis.org/news/2024/february/what-is-spoon-theory-and-how-can-it-be-helpful-for-people-with-arthritis/

Those people should read it and think about it, but I don't suppose they will.

Here Sana there is no need to feel not understood everyone understands pain. You will be offered support and encouragement other people's tips and in turn you can support other people. It's such a good safe place to be.

Sending you some ((()))

Take care

Toni x

julesflower

I understand how you feel. I'm a recently retired nurse of over 25 years experience in healthcare. I have osteoarthritis everywhere and cervical spondylosis.

In my experience people are not sympathetic unless they can see an injury but as we all know living with the pain of arthritis involves not just pain but also chronic fatigue and sometimes depression as well.

I am looking for some advise as I had to retire early because of my arthritis and am really finding it hard to get a job. I don't know if it's my age putting employers of employing me and feel too scared to mention my arthritis as a disability in my application incase I get rejected for this reason also. Any advise welcome please.

Anna

Hello @julesflower and welcome to the online community,

It can be challenging applying for a job at the best of times, but age and health conditions can make us lose confidence in our skills and abilities. Good for you for getting back into the workplace. There are several government websites that might be of help to you:

https://jobhelp.campaign.gov.uk

https://www.gov.uk/access-to-work

Many of our members have been in your situation, so hopefully someone will along to share their experiences.

Do let us know how you’re getting on,

Anna ( Moderator)