Living with RA at 24

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.

Comments

  • Arthuritis
    Arthuritis Member Posts: 269

    @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.

  • 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: 15

    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: 3

    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 💗

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