Young people living with arthritis please read and comment.

Loujbell Member Posts: 4
edited 3. May 2014, 19:48 in Young people's community
Hi my name is Lauren

I was diagnosed with JIA when I was 4/5 years old and have lived with it ever since. I am now 19 and my arthritis has only got worse over the years, I now have it in most joints now.

I'm never really been the one to let it bother me or get me down but this year it has really affected my life. I often get very down about it as no one else I know has arthritis, so I feel I have no one to talk to about it.

I just wanted to speak to other young people living with arthritis and see how you cope and that I'm not the only one whose arthritis gets them down at times.

I would love to hear about from some people, it would be really nice to be able to talk to someone who is actually going through the same thing.

Thanks for reading :)


  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I'm not young but I too am battling with living with this disease (I have two sorts plus fibro) and yes, it is a struggle. I don't know if you have come across 'The Spoon Theory' and 'There's a Gorilla in my House': google them, they explain what we are facing very well; I think they are worth printing off to distribute to friends etc. so they are a little more informed about what we deal with on a daily basis. Please post again on the Living with Arthritis board because you may gain more replies on there. I wish you well for 2014, I hope you have as good a year as possible. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • kimbo1
    kimbo1 Member Posts: 29
    edited 30. Nov -1, 00:00
    Hi Lauren

    I'm 21 and was diagnosed with arthritis just under a year ago, 2013 has been the toughest year of my life so far but hoping things are only going to get better in 2014.

    I know exactly how you feel about not having anyone to talk to as well as not everyone understanding the disease. If I don't mention I'm in pain my friends assume that I am 100% (this is rarely true :P), I think the worst thing for me is the fatigue.

    When I'm having a tough time, unfortunately it usually ends up with me cying down the phone to my parents, but this actually helps me as I seem to hold it all in and then have a massive eruption!! But have also found that several of my friends are really good listeners and I can just tell them how I am feeling and get it out there (hopefully avoiding the future crying)!

    Sorry to go on a bit, hope this helps :) I too would love someone in a similar situation to me to tlk to about things!

  • Sezeelson
    Sezeelson Member Posts: 133
    edited 30. Nov -1, 00:00
    Hi Lauren :)

    I'm 21 years old and diagnosed with JIA at just 16 months old so I've never known life without it. I know have it in every single joint, even getting pain in my ribs as I breath and my toes preventing me from being able to walk properly.

    I've been on a tonne of different treatments, medicines and therapies etc. Etc.

    I've also got a long term problem with depression, most likely triggered by the struggle I've had with my arthritis over the years. It's a hard card to be dealt but you certainly are not on your own.

    I am on citalopram 40mg a day for it which is always under review as it doesn't really help much :/ try to take one day at a time. Don't assume your going to have a dreadful day tomorrow coz your having a bad day today, depression fluctuates as much as arthritis does.

    Being on enbrel has definitely helped with my fatigue, I have a bit more energy then before which is always handy!

    Something that may help, look up the spoon theory. It's a good way of helping people to understand what you are going through. There is also a wiki how page which is a write up to show to friends and family :)
  • Loujbell
    Loujbell Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi Kimbo :)

    I know exactly what you mean by 2013 being a hard year, 2013 I had to face a lot of things that didn't think I would have to just yet. Don't get me wrong my friends and family are amazing and always there for me, but they always say themselves how they do truly don't understand what I go through so I have never been able to speak to someone about it properly.

    I try not to let my arthritis stop me doing stuff but it stops me doing a lot which sucks but just gotta get on with it haven't you.

    I started two new meds about 4 months ago so I'm hoping these will finally work as my body has rejected the last few meds I have been on.

    Don't worry I'm always moaning and crying to my mum about it but it helps me too!

    I would love to carry on talking to about these things if you wouldn't mind :)

    Thanks for listening :)
  • BluesWalk
    BluesWalk Member Posts: 48
    edited 30. Nov -1, 00:00
    I think alot of the time it's just facing the fact that, this is going to be a part of your life now. Anyone who gets diagnosed with an illness like these would get depressed, you are by no means alone. The great thing about making friends with other people who have arthritis is that we understand more than anyone else ever really will. If you are from Scotland give me a shout as there is a large group of us arthritis crew :)
  • ryanbibb93
    ryanbibb93 Member Posts: 9
    edited 30. Nov -1, 00:00
    Hi Lauren,

    I was diagnosed at the age of 8 and turned 21 yesterday. I completely understand your struggle and why it is getting you down.

    It is a very hard thing to come to terms with at a young age. I was on for a professional basketball career at a young age and my arthritis put a halt to all of that. I was a huge sports fanatic and I used it to keep my mind off other bad things going on in my life such as my dad's passing when I was 13.

    I turned into a horrible person, and I'm not afraid to admit it. I was getting in trouble with the law, my school, fighting etc etc.

    One day I just thought to myself "this isn't me". I knew that I wouldn't be able to play sport again in my life so I decided to focus on starting new interest/hobby which I could have a career in and I think this is what you need to do. Find something you enjoy/love doing and then find other people that also like doing that. All of my friends were gained from playing so much sport.

    I decided to take up website design/front-end development as it involves a lot of skills which keeps me busy whenever I work. I met awesome new people whilst teaching myself.

    4 and a half years from when I started teaching myself, I am now in full-time employment as a website designer on a good wage and kept busy all of the time.

    So in the end, I think you just need to find something you like to do and pursue in that as much as you can, become one with it and thrive to succeed in whatever it is you choose. Set your goal in life to become as good as you can be in whatever it is you choose and don't lose motivation. Occupational Therapy may be a good idea to kick-start it off.

    Hope that helps,
    Visit my website for news on arthritis in young people, treatments, pain management techniques, natural remedies and a lot more!
  • rachelwaltham90
    rachelwaltham90 Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi Lauren,

    I've been suffering with my joints for about 4 years now but in 2013 I was diagnosed by a rheumatologist as having mixed connective tissue disease, this is basically an overlap condition where symptoms may not be strong enough to be one certain condition. Predominantly for me my symptoms are centred around RA, raynauds phenomenon and fibromyalgia.

    I've had some tough moments up till now, where I've always thought "I'm 23 but I feel like I have the body of an 83 year old" etc etc and generally feeling sorry for myself. Some days I'll admit it helps to cry and let all my frustrations out, but doing it day in day out really takes it's toll and it doesnt help to move on with life and realise how much can still be done even though we suffer from these conditions.

    I decided in 2013 to stop living in the shadows and to begin to challenge myself in the hope that I could make myself fitter, healthier and stronger. This definetely hasn't been easy and I still have a long way to go, but I have successfully completed my first 10k run, have started learning how to swim and have gotten back on a mountain bike after a very long time away from using bikes.
    I'm currently training towards my first triathlon which is in September this year.

    Taking on fitness hobbies like these has really helped me to not dwell on my condition and my limitations. I have days where I cant lift my arms to wash my hair or cant get out of the bath without assistance, but I know that when I complete a 3 hour bike ride or get back from a kettlebell workout that I feel strong and for maybe split second healthy.

    This approach isnt for everyone, and I still experience a lot of pain, muscle weakness and reduced mobility, but I am working hard to improve my strength and flexibility aswell a my cardiovascular abilities.

    I agree with some of the comments above that getting into a hobby/interest is agreat way of focusing on something other than your condition and can really help to show that there is more to life, your world hasnt ended and you can do so much more than you may think right now.

    Have faith in how strong physically and emotionally you can be, our bodies are a lot more resilient than they make us believe, and if you keep in mind that "you can and you will" instead of "i can't or I could never" this will go a long way, it certainly has for me! At the start of 2013 I was the biggest user of phrases like "I'd never be fit enough to do that" "I can't do it" etc etc

    I wish you all the best for the future with your treatments and with your life/love/hobbies and goals. Keep us all updated on your progress and any new coping mechanisms you find help you :)

    Rachel x
    Mixed Connective Tissue Disease Sufferer, at 23 working to show life isn't over and am training towards my first triathlon in Sept 2014. Our conditions may slow us down or hamper our progress but they will not stop us! . Feel free to follow my blog at
  • MrsGizlo
    MrsGizlo Member Posts: 1
    edited 30. Nov -1, 00:00
    Hi Lauren!

    I'm new on this and found that I'm not the only one which is nice, and I understand the pain you must be in.

    I'm 21 and I'm on the waiting list for a hip replacement, so I'm a bit different to you but I see where you're coming from. I was born 7 weeks early and my hip wasn't fully formed. I had loads of operations as a baby and now I have one leg longer than the other.

    The pain is awful and for people our age, this isn't fair at all. I miss going out with friends and I certainly miss walking places that I can't go to now. I miss wearing heels and I have a box full of shoes I can't wear because my insole won't fit.

    Keep strong love, the pot of gold at the end of the rainbow will be coming our way soon!


  • Afc
    Afc Member Posts: 15
    edited 30. Nov -1, 00:00
    I can relate to a lot of things mentioned here. I'm 22 with an inflammatory arthropathy (probably seronegative - i've never received a definitive diagnosis). On top of the pain/immobility etc. its often the little things that get to me. Like Holly said - I miss wearing heels. And skirts and dresses (I don't feel great about having my knees on show...) and I miss going hillwalking and riding my bike and dancing. It just makes me wish I'd done more of it before.
    Its just strange - last year I climbed Ben Nevis (a wonderful remission phase), and now I can't even climb the stairs.
    I still haven't found any hobbies to replace hillwalking/dancing yet. Let me know if you find anything that works for you - i may just try it too!

    I get what you mean about not having anyone to talk to about it (besides from the online community of course). Its sort of frustrating having to explain it to the same people over and over again, and they always seem to forget. I know its not their fault and they have their own problems going on but it does get tiring. I just googled the gorilla and spoon analogies and thought they were great - I might show them to some people.

    I apologise for being so negative, I have been in a bit of a negative rut recently. But I hope your meds work for you and I'm sure we'll all get there in the end (maybe we won't be able to wear 6 inch stilettos but close enough ;))