Living with RA at 24

Becca22
Becca22 Member Posts: 10
in Young people's community

I thought I should write on here to see if others feel the same way. I was diagnosed with RA at 23 out of nowhere now I’m 24 and have found it very hard to cope with everything medication, pain the fact I’ve totally lost myself. I’ve just started biologic treatment and everything is making me overwhelmed. I have really bad anxiety and depression now I’m on edge everyday. I’m not sure how to adapt to myself now I feel like I’m always wishing I could go back to when I was okay.

Tagged:

Comments

  • Arthuritis
    Arthuritis Member Posts: 452

    @Becca22 That is the tragedy of RA. It can happen at any age, even toddlers, and unlike OA which slowly creeps up over years, even decades, RA has rapid onset and a shock at any age, giving you no time to acclimatise.

    However what we have as recently diagnosed is each other’s support, ie, you are not alone, we are with you. This matters on the days that you have a really bad flare or when you are down and grieving for your loss.

    The lack of government & charitable foundation investment in curing RA (compared to the amount of money spent on developing lifelong drug dependancy that cripple the whole immune system) is something I find most depressing, and yet utterly logical, if you follow the money.

    The only silver lining I can think of is despite the limited RA cure funding, there is a good chance of a cure in your lifetime if you are in your 20’s. Stay strong @Becca22

    Maybe write to your MP even… like Bobby of VA who set the bar with UK politicians.

    I quite enjoy watching Tim Spector’s lectures on the gut biome and its impact on autoimmune disease. I found it helped reduce some of my overt inflammatory symptoms.

    Do keep posting here when you are down, there will be people here who understand.

  • Melissa26
    Melissa26 Member Posts: 7

    Hi Becca, I totally understand where you are coming from. I was diagnosed with JIA when I was 6, it went into remission when I was in high school and came back at 18, in the summer the doctors change the diagnosis to RA and stated I had tried so many drugs, I am only 26! I now have really bad health anxiety and due to start a new drug which is new for people with RA but get so anxious but also in so much pain! Its hard when you feel so alone also, I don’t know anybody else with RA at my age and so my friends and family do not understand what we go through! If you ever need to reach out please do get in touch as it can be so lonely but just remember you are never alone!!

  • Miranda
    Miranda Member Posts: 23

    Becca I am so sorry to hear what you’re going through. I’m very early in my diagnosis journey, so I think the others will offer better advice than me, but I can relate to the pain. Go easy on yourself. Miranda x

  • LynnL
    LynnL Member Posts: 6

    Hello Becca,

    I have just found your post as I have just joined the community. I myself was diagnosed in February 2021, was 23 at the time. Had my 24th birthday in September. I completely understand how you feel, I’ve just started biologics myself and have found the whole thing very overwhelming.

    I was a very social, outgoing person so really struggled initially with having to cancel plans and not being able to do certain things due to flares. The other thing I found difficult was having to be strict with my alcohol units when going out due to the medication I was on. I felt super judged and felt like everyone thought I was weird for not keeping up with them or spreading my drinks out over a longer period of time. I found speaking to my friends helped, I have been really fortunate with the friends I do have as they have been really understanding and supportive. However, I did loose some other friends along the way as they didn’t understand why I couldn’t plan in advance and just generally couldn’t get their heads round my situation.

    Yes I have good friends and family around me, but they don’t understand. They do their best, but RA can still be very lonely and isolating despite being surround by live and support.

    Mentally I have found the whole thing really tough!! In your 20’s you have a life plan and dreams you hope for but with RA that all changes, you need to adapt.

    Some of the things that have helped me come to terms with my life with RA is learning to live each day as it comes, not putting pressure on myself. Everyone is different, everyone’s day is different. You don’t need to get 10K steps a day, you don’t need to go to the gym everyday, if all you do today is make it through the day then that’s great! Think social media has a lot to blame for the pressure we put on ourselves lol. Another thing that’s helped me is not feeling guilty for resting, I used to be very hard on myself. Would never miss a days work and if I did I felt extremely guilty. We need to listen to our bodies more, if we need to rest then that’s what we should do.

    The biggest thing is realising RA doesn’t define you, it’s not who you are. Yes it is a condition you have but it isn’t what makes you YOU! You will get your sparkle back! You will be able to do things you dreamed of! I know it doesn’t seem possible now due to the pain, all the medication and the side effects but it will get better.

    Happy to talk more if you would like too, your not alone 💗

  • Auksev
    Auksev Member Posts: 3

    Thank you for your nice comments

    I'm 26 and was diagnosed with RA spring 2021 at 24 and fibromyalgia last week.

    Loneliness is definitely something I relate to, especially working in the NHS strangely

  • Auksev
    Auksev Member Posts: 3

    Thank you for your nice comments

    I'm 26 and was diagnosed with RA spring 2021 at 24 and fibromyalgia last week.

    Loneliness is definitely something I relate to, especially working in the NHS strangely

  • Poppyjane
    Poppyjane Moderator Posts: 846

    Hello @Auksev welcome to the online community

    You were diagnosed with RA last year and more recently with fibromyalgia and although you work for the NHS where you might expect greater understanding of your situation, you too are experiencing loneliness. I see from the posts that you have responded to that as a young person experiencing the pain this condition brings with it, can in itself bring a sense of isolation. That is why as a community of fellow sufferers and their families we are here to support you .

    As part of the young person's group you will be able to exchange posts with similar aged people with similar life experiences and outlooks. Meanwhile I have attached some information which I hope you will find useful.

    https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/
    https://www.versusarthritis.org/news/2021/december/i-m-very-open-about-talking-about-my-fibromyalgia

    Don't hesitate to contact us with any questions and do let us know how you get on when you try the

    Link to the Online Meeting for 20s to 40s - Versus Arthritis.

    Take Care

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • Cassienova
    Cassienova Member Posts: 19

    Hi Becca,

    I have Inflammatory arthritis in my hands (specifically in my finger joints) and I got it when I was 25 (I'm now 27). I can completely understand the isolation and loss of yourself.

    If I'm honest for me it's all about time, it takes time to learn what your new body can do, what eases the symptoms and what meds work for you. I'm still on the journey of working that out and I think what gets me through is thinking about what's next.

    If you're feeling lonely, feel free to message me. We can vent about our situation together ☺️

  • Rachibob89
    Rachibob89 Member Posts: 17

    Hi becca , I’m a newbie here but joined various fb groups which has helped me loads to learn things and just feel the same as someone else ! ☺️

    Ive struggled to mentally keep in the right head space as in a way we are grieving for our old bodies but all our feelings are valid so we got this!

    I got diagnosed in Oct and started meds in January and still have horrible flares in my hands.

    but we are developing a new us and should be proud of our new journeys 🥰✨

  • Kizzy87
    Kizzy87 Member Posts: 2

    Hi Becca,

    I have had back pain since I was 11 years old. Been struggling a lot of my life and after going private I've finally been diagnosed with Ankylosing Spondylitis at 35. I understand what it's like to feel different from others and not be able to do things I want to do sometimes. I've had a lot of "You're too young for that" type comments which can be really irritating.

    I'm still trying to navigate how to manage the condition as I'm struggling with NSAIDS because of stomach issues.

    It is a lot to deal with, hopefully we can all help each other on here and not feel so alone x

  • Ellen
    Ellen Moderator Posts: 1,841

    Apologies for the hijack @Becca22

    I just want to welcome @Kizzy87 to the online Community.

    Kizzy I am sure some of the people on this thread will get back to you soon perhaps @Rachibob89 who also posted yesterday.

    In the meantime I wondered whether you'd find either of these links useful. The first is about painkillers - the section on NSAIDs talks about stomach issues so might be useful and the second is a story by Poppy about her AS journey.

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/painkillers-and-nsaids/
    https://www.versusarthritis.org/about-arthritis/your-experiences/your-stories/poppys-story/


    I do hope you will keep posting.

    Best wishes

    Ellen.

Categories