How to make friends with people with chronic pain

Hey! I just posted on the say hello section but wanted to come here to see if anyone wanted to have a chat or exchange some stories/symptoms?

ive never spoke to anyone with arthritis or chronic pain that is my age before and think it will help me in my healing process as I’ve struggled mentally quite bad this lockdown!!

I’m 22 and from Essex, I love makeup & art, love talking about interesting topics not just illness!! ❤️

Comments

  • jeddison1985
    jeddison1985 Member Posts: 211

    Hi @chloeday welcome to the forum and wider community.

    Firstly, well done for finding the strength to post and open up about what you are going through and being so transparent with how this has impacted your mental health.

    I can empathise with your situation a little as I first experience arthritis at 20. For me this was reactive arthritis at that stage. Like you implied, being young and having what was always perceived as a chronic illness that affected only older people, was initially a struggle to comprehend.

    My brother had the same experience four years earlier than me when he was 20. We have had remarkably similar paths but I had some foresight as to what might happen. He struggled a lot more mentally with it and couldn’t understand why it had happened to him.

    For me for about 8 years I really struggled to control my arthritis and latterly was diagnosed with Ankylosing Spondylitis, a form of inflammatory spinal arthritis. It impacted my life severely as a keen cricketer I was unable to play to the level I had previously, I got into a cycle of putting on weight which increased my pain. Failed on several medications and went into myself massively.

    I was then lucky enough to be put on biologic medication which was able to temper the pain, which gave me energy to exercise loose weight and feel much better mentally. This transformed my life and ensured a got to a place where I could balance my disease and my well-being.

    Only then did I start to feel comfortable with talking about it but now I wish I had earlier as unlocking that element combined with the medication and exercise gave me my life back.

    I am now at the point where I have experienced a number of years being completely pain free and in some form of remission. This gives me hope I can find ways to deal with this throughout my life, now 35 I can despite having AS enjoy everything I never thought possible with my daughter and wife.

    So I guess what I am concluding with is:

    • You are not alone, there are lots of people diagnosed young who face a life long battle.
    • I wish I had been able to reach out to others earlier in my journey.
    • There is hope and treatments get better all the time and a diagnosis is no longer for life you can manage a healthy balance.
    • Dont let your condition define you and as hard as it is a balanced mental health improves your physical health.

    Good luck and happy to try and help in any way I can.

    Joe

  • Lucy1
    Lucy1 Member Posts: 5

    Hi Chloe,

    I am in a similar boat!

    I just turned 24 and have been diagnosed with AS earlier this year but have been battling with chronic pain and injury since my late teens and am currently going through a really tough flare up. Finding it hard to be productive while also managing the arthritis!

    One thing that I have found to really help is talking to people and finding community who get it (which is much harder to do during lockdowns - hope you're doing okay!).

    I'm from Australia and really interested in nature, photography and reading! Feel free to send me a message if you wanted to chat about it all!!

    Take care ☺️

  • MaryH
    MaryH Member Posts: 12

    Hi my name is mary and i have arthritis in my two hips which is not great at times if any one would like be my new friends that would be great when i have a bad day with my arthritis i listen to ozzy osbourne lay ur world on me it helps me to stay strong when i think i can't cope with this arthritis i wish i didn't have it

  • Anna
    Anna Moderator Posts: 930

    Hi @MaryH and welcome to the online community!

    You have joined a friendly community of people who all know what it’s like to live with arthritis, as you do with arthritis in both your hips. I’m sure you’ll find plenty of other people who like to chat ( and maybe a few who like Ozzie Osbourne!) Why don’t you have a look round the forum - there are sections for all interests, so do join in wherever you feel comfortable. You could tell us a bit more about yourself in the ‘Say Hello’ forum; discuss with others about what life is like with arthritis in the ‘ Living with arthritis’ forum; or just have a daily chat with others in the ‘ Chat and news’ forums. I’m sure you will find something to interest you.

    if you want to read more about managing arthritis of the hip, I’ve posted a link below from the arthritis website. It talks about treatments, self help and exercise:

    Best wishes and once again, welcome!

    Anna ( Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • MaryH
    MaryH Member Posts: 12

    Thank u very much

  • Se1ina
    Se1ina Member Posts: 5

    Hello All,

    I am in my early 30s and diagnosed with OA and Fibro a few years back. Started walking with a crutch for the past year which helps but feel a little anx about. Oh the anxiety is a mo fo.

    I love playing acoustic guitar, coffee cake and cats.

    Life is tough, but look for the pockets of joy in each day.

    X

  • Bea371
    Bea371 Member Posts: 8
    edited 4. May 2022, 12:31

    Hi @Se1ina ,

    I just saw your post and I completely understand what you mean about the anxs.

    I’m in my 30’s and looking for someone to go for a coffee with if anyone fancies a meet up and a have a ‘Normal’ chat about things and catching some jokes.

    I love art, music and just learning how to sew 🤓

    I’ve got inflammatory arthritis and struggle with the medication, would love to hang out with someone who understands x

  • Buzz10
    Buzz10 Member Posts: 21

    Late to the part on this one but currently coming to terms with having to use a crutch (and for the most part not doing it!!) any advice grately received :)

  • Hi! I am also using a crutch since mid last year - it's an odd one and I have finally got more confidence to be out and about, without fearing not being able to hold things or get about, because having breaks when walking for 5 minutes, is now my new normal.

    For some context, I have just been diagnosed early this year with possible inflammatory arthritis.

    This year I am 23 - and even though its been a short time, I am happy to talk about what I have had to do, since feeling very self conscious about using walking sticks/crutches/aids.

    Hope you are well!

  • Buzz10
    Buzz10 Member Posts: 21

    Hi!

    Oh that's so young! I was diagnosed with Rheumatoid Arthritis when i was 21 (now 34!) and was in remission (so to speak) for around 10 years where i absolutely took being pain free and able to walk for granted.

    Now it has come back with a vengance and probably alot worse than i was and only feel comfortable using an aid (and accepting help) when i'm with my partner. But i am feeling self concious about it all and feel like everyone is looking (which they probably aren't!)

    Hope you're doing good as well :)

  • Hey!

    It's a wild ride using supports, and even though it may not be the same, to me it can feel like the world is watching - I completely agree, you are not alone!

    Crutches and sticks can make you feel vulnerable, but they make everything 100% better once you are used to it. For me, after using them for so long, it has become second nature to not see everyone and worry about everything. I can now handle going alone to shops (very slowly mind you) and be able to have some freedom back, which used to be an everyday. I haven't had an issue getting into places, move around areas, or feel shy about asking for help to get a coffee carried for me. It seems very silly, but I felt so small and it is a common feeling - alot of people I have met at hospitals and around have shared the sentiment with me. And even now, trust me, I still have to remind myself that it's not an issue - people (most of the time) want to help 😁

    My advice is take it slow - it has been a while for me and I am finally getting a system for it! There's no rush to it and I learned that if I had to use it, I could take my time about it. Its when I normalised it in my brain and forgot them being anything other than grabbing keys for the door, that I made peace with it all. I am happy to talk about anything with crutches/aids, if you are feeling its daunting - because it can be, I know.

    Being with someone always helped me too - so I can relate the security of having someone there with you. It's always nicer to have someone you trust there too. I am so glad you have your partner there for you and that they help when they can!

    I hope life is treating you well and that today is a good day!

  • Melissa26
    Melissa26 Member Posts: 7

    Hi Chloe,

    I am 27 from Yorkshire and I have suffered on and off with rheumatoid arthritis since I was 6 (it was JIA then) I’ve gone through some ups and downs. At points it’s like I don’t have the disease but most recently I have been suffering really bad and struggling to be heard by my rheumatologist and feel a bit alone. So I am more than happy to chat to you about arthritis and chronic pain. I also love make up, reality tv and all things clothes and shopping. Would be great to get in touch x