Need people in the same situation as me to talk about it!

hello, im all abit new to this! im living with JRA and i am 16, i have had it since i was two. i got very happy when i found this website because i have been longing to find a place to talk to people in the same situation as me. its so hard as my parents just dont understand...my friends try their best but they just dont get it. does anyone ever feel like people get bored of you talking to them about it or that they are not interested anymore? i get this with my friends. for example say i want to tell them how the appointment went i just feel like i am bothering them with it so now i tend to keep it to myself.

33 Replies

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  • Hi soph bless u it's hard when nobody really understands what RA is all about but there are a lot of people on here and other RA sites that will support and listen to you, keep your chin up hun xx

  • thankyou so much xx

  • Hi and welcome ah bless you r so young to have this alfull ra this site is great lots of help on here only been on here about 9 months and they have helped mekaren x

  • thank you! everyone is so lovely and welcoming! im sure this will be a very helpful site from now on!x

  • Hi Soph - welcome! I have sons your age and can imagine how isolating it just be having JRA and not being able to speak about it without your friends glazing over. Its very preoccupying isn't it and appointments are a big deal and we want to go over them in detail afterwards. I find my friends snd family change the subject - even my husband does a bit if I try to talk about it beyond a very quick mention. They don't have any idea of how horrible the drugs can make you feel either. This is a great place to come for that reason.

    There are some younger forum members and one of the most active is Em - here's her latest blog in case you missed it and I've linked on it to another person who is 17 and is struggling a bit just now by the sound of things. nras.healthunlocked.com/blo...

    Hope perhaps you can personal message each other as well as coming on here to chat to others with RA? Hope this helps. Tilda

  • Tilda, you are such an asset to this site xxxxx

  • Thanks - just think its important to try to be useful in some way that's all. Mind you I'm driving my husband/ artist partner mad because I should be concentrating on our current project so maybe some RAer displacement going on with me too! X

  • thank you so much Tilda! i will defiantly go and chat them thankyou for introducing me. this site is helping so much!

  • That's brilliant Soph. I have a very mature niece who is only about a year older than you and we text a lot and she's called Soph too. I have told her about RA and explain that people her age sometimes have it too and she always asks me how I am and expresses interest in RA and wants to learn more.

    She says if she meets anyone at uni or in her workplace who have it she will know a bit more about what they are going through. Remember that every person who is told a bit more about what JRA and RA are is one more person who knows. But there are ways of getting this over and sometimes I think it's enough to tell people once and suggest they google it and that usually serves to make them think harder without me having to labour the point. Take care and good luck with finding others your age too. Tilda x

  • Hi Soph:

    It was bad enough for me to accept RA when I was 50 so can only imagine how awful it is for you. People my age can be very intolerant and not understanding, so youngssters your age will be even more so, as it is a hard thing to understand - arthritis has historically been associated with old people. My husband is very good at listening but I am aware that it cn get boring for others to listen to you.

    You will find this site very supportive and with lots of hints that can be useful for you. As Tilda has said, try to connect with others your age as the perspective is very different for sufferers at a young age.

    If your friends could see your pain, e.g. your arm in a sling or cuts and bruises etc. they would prob. be more sympathetic, but RA or OA is such an "invisible" disease, no-one understands the pain and inflammation and depression that RA brings on.

    Hang in there; try not to bring the subject up to your friends for a while and see if anyone asks how you are. A good friend will be concerned for you.

    When I was working, I found that people were not educated about the disease and were shocked when I explained it fully to them - that helped them to understand. A funny part of the telling was when I showed them my fat, ugly, distorted knees - lots of oooohs and aaaahs then as they look painful even when they're not hurting!

    Keep coming here to "unload" whenever things get you down. YOU ARE NOT ALONE!

    Take care,

    love,

    Lynn x

  • Hi Soph

    Pleased to see you've found our site and already had some good responses. As others have said, there are a few younger people on here, but unfortunately not many at the moment. There is a forum run by Arthritis Care that is specifically for young people and may be of interest if you want to connect with more people that are your age:

    arthritiscare.org.uk/Living...

    You are also obviously more than welcome to use this forum.

    Kind regards

    Victoria

    (NRAS Helpline)

  • Hi, like you I've had RA since I was 2 - I'm now 56. I am severely disabled as a result of the RA - I would reckon mainly because there wasn't the help, medical or otherwise ALL(!) those years ago. However, I would say don't give in to it - my life has been fantastic (and I hope will continue to be)!

  • thankyou, im just trying my best to stay positive!

  • Hi Soph, i've just recently joined this site and I had so many wonderful & supportive responses to my first blog. Any time you need to discuss anything, no matter how trivial you might think please get in touch with us here as we can all provide help, support and a that all important shoulder for you.

    Hope you feeling OK at the mo. xxx

  • thank you this will be a massive help to me!xxx

  • I found the following link helpful when trying to explain to friends how I was feeling.

    butyoudontlooksick.com/arti...

  • welcome to the site.. how is your health at the moment? x

  • Hi Soph,

    Welcome, this is such a great site - I'm really glad I found it as well! Hope you find it as helpful as I do.

    I'm 23 (was diagnosed with RA 2 years ago so am still quite new to it all) but I completely understand what you mean about family and friends - they do try but they don't realise what we go through so i've stopped going into detail, because, like you, I feel like i'm bothering them. Your not alone in feeling that. But I think thats got a lot to do with the fact that very few people dont know what RA is - most people I've spoken to think it is only something that affects older people!So I'm slowly trying to teach my friends what RA is and how it affects me, and I think thats helping them understand me a bit more - maybe thats something you could try with your friends?

    How are you getting on with everything else - medication etc?

    There are a few younger members on here - hopefully more of them will reply soon!

    Please feel free to message me if you want to talk more.

    Tracy x

  • thank you! yes, that is the beauty of this site everyone understands each other! my medication is under control at the moment, taking Naproxen now just changed from Methotrexate because the side affects caused me to miss to much school and i started failing..it caused to much sickness and i was just always in bed. the Naproxen is so much better it is just making my eyes worse but its better than the sickness!

  • Tilda has already pointed little em out to you.

    Hope you get HELP here. Lots of super people.

    Made lots of new friends.

  • thank you!

  • Hi soph and welcome. I'm 26 diagnosed last year and had symptoms for around 4 years.

    I find I very difficult with my mates who want to go on adventure holidays, camping or charity bike rides for example but I can't commit to how I'm going to feel on a set date. Also as im now on mtx i dont drink so going out and the like has been affected as i find im not invited anymore.

    And again yes family don't seem to grasp the condition either.

    But saying this it is getting through to my close mates and family and people are always supportive so it does come round

  • I have the planning anxiety myself

  • yeah this is the worse part my friends are starting to go out and there are part that i cant join in and this site is helping a lot!

  • My niece is 46 and was also diagnosed when. She was two that is rare .inwill listen

  • hi soph im 20 and got diagnosed when i was 2 years old 2 if u want we can chat to gether i know how u must feel coz im in the same situation as u and not long found this website either:) x

  • yeah this is site is brilliant, thank you so much x

  • Hi Soph :)

    I'm 19 and I have JIA - Ive had it since I was 3yrs old and Ive got it in every joint in my body. Ive been on lots of different medicines as well. If you fancy a chat, send me a message :)

    Em xx

  • thanks Em! your support is much appreciated! xx

  • Hi Soph, I'm Helly. I've not been on this site for a while (forgot email address and password *doh!*) but someone mentioned your post so I thought I'd pop on and say hello.

    I too was diagnosed with JRA when I was 2 years old. I am now 37 but can certainly understand your frustrations, particularly with friends and parents.

    It is hard because you are trying to define the person you are, a 16 year old who simply wants to feel like a 16 year old, wear girly shoes, do the fun things but at same time trying to live with a long term condition. For me it was trying to explain the tiredness side to friends. On my good days, I could appear like any other teenager but when my body had had enough, sometimes it felt like I was 'wimping' out. My parents were also protective, especially when it came to staying over friends and while I think all parents can be protective regardless of a health condition, it almost makes it justified. It was frustrating!

    I'm sure there is much more I can share with you so if you fancy a chat or want to ask anything in particular then let me know.

    Helly x

  • hello helly! thank you for your reply :)

    yes this is exactly how i feel and i feel like i have had to mature a lot faster than all my friends. the worst part is in PE when i cant take part and people who are unaware just think im lazy. i know i cant wear heels like my friends which is so annoying!

    thank you for your support!x

  • Yup I had the same with PE, had to sit there and watch everyone else or I was sent to a different lesson. Totally get the heels bit, I remember even at aged 5 when all my girl friends would play dress up and wear those little princess heels, I wasn't allowed. The annoying thing is I can wear a kitten or wedge heel if I know I'm not walking far or standing for long periods but all the shoe shops have huge high heels. My feet cry at even the thought of putting them on x

  • Hello Sophie

    I just wanted to let you know that we are currently doing an evaluation of JIA services across the UK with a view to producing a report in early summer which will identify ways in which NRAS, through creation of a new JIA arm, can help support families and young people with JIA in the UK and the health professionals who treat them. If you would like to help us in this process by sharing your experiences, I'd love to hear from you. You can email me at ailsa@nras.org.uk

    I hope to hear from you.

    Best wishes

    Ailsa

    (CEO, NRAS)

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