juvenile arthritis

gingerizzie
gingerizzie Member Posts: 6
edited 9. Oct 2019, 10:17 in Say Hello Archive
Hiya

I'm Izzie, I'm 21 years old and I was diagnosed with arthritis 12 years ago, affecting my ankles, knees, shoulder, elbow, wrists and fingers. Because of my age I don't know anybody with arthritis and unfortunately there aren't any support groups in my area for young people with arthritis (yet!) so I'd love to chat to people like me about living with this illness.

Despite my illness I've still been through my GCSEs, A Levels and a university degree, and I'm active in every way that I can be. I really want other children/young people with arthritis to know that your diagnosis does not have to define your life, so I'm always happy to talk to other people like me or their parents about getting through school/college/uni with this illness.
m0150

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hello there,

    What a wonderful cheery post, a pleasure to welcome you to our forum. Well done on your academic achievements, have you decided on your next steps yet?

    We have had small groups of youngsters and Mums on the forum in the past helping and supporting each other, and helping, supporting and getting support from the rest of us too!

    Have you heard of the spoon theory? It's written by a girl as she was going through uni, here's the link

    https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Looking forward to seeing you around
    Take care
    Yvonne x
  • stickywicket
    stickywicket Member Posts: 26,243
    edited 30. Nov -1, 00:00
    Hi Izzie and welcome :D

    What a lovely first post! As you'll see, we do have a 'Young People's Forum but it's really not used very much. Young people often come when first diagnosed (or even not yet diagnosed) or when going through a bad patch but don't usually hang around for long. Those who do tend to migrate to the Living With Arthritis forum as more people look on there.

    I've had RA since I was 15 (I'm now 72 :roll: ) and, like you, managed O-levels, A-levels and uni and I agree it's tough when you're young as no one really 'gets it'. And that can make it harder to turn down invitations and offers. I used to hate it when old ladies regarded me as 'in their gang'. NOOOOO! :mrgreen:

    I remember we had a 'Young People' group (I think it was Under 35s) in the British Rheumatism and Arthritis Association (which I think was the fore-runner of Arthritis Care but I'm not sure). We had a newsletter. I can't remember how often it came out. I did find it useful. I wonder if Arthritis Care would be interested in letting you do something similar. I also got together, briefly, with 3-4 other young women with RA who lived fairly locally but, of course, we all had RA so getting together wasn't too easy. Some couldn't drive; some couldn't get a babysitter; few could get out of other people's chairs :roll: It soon died a death. The woman who produced the newsletter, though, did write a book called 'Arthritis, at Your Age?' which can still be read freely online at http://www.dumville.org/aaya/ Sadly, Jill (Holroyd) died some years ago.

    My solution was to get right away from arthritis, do voluntary work (I was virtually unemployable once my sons were bórn) and so show other people that you could be young, have arthritis and still lead a more or less normal life. But, if you'd like to stick around here and help newbies (and oldies :wink: ) you are very welcome indeed.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • sensiblesal
    sensiblesal Member Posts: 3
    edited 30. Nov -1, 00:00
    Hi Izzie
    It is lovely to hear from you, and brilliant that you want to encourage and motivate other young people living with arthritis. Peer support is the basis of the Young People and Families Service, which is active in a number of different areas across the UK. I manage the England Service, where young adult peer support volunteers co-facilitate services in the West Midlands, Greater Manchester, London and the home counties. The link below will give you an idea of some of of events and activities we offer young people and their families.
    https://arthritiscare.org.uk/our-services-and-support/events/filter:Young people and families
    If you would like to hear more about the service, and explore how you could perhaps get involved please do contact me at [email protected]
    with very best wishes
    Sally
  • gingerizzie
    gingerizzie Member Posts: 6
    edited 30. Nov -1, 00:00
    moderator wrote:
    Hello there,

    What a wonderful cheery post, a pleasure to welcome you to our forum. Well done on your academic achievements, have you decided on your next steps yet?

    We have had small groups of youngsters and Mums on the forum in the past helping and supporting each other, and helping, supporting and getting support from the rest of us too!

    Have you heard of the spoon theory? It's written by a girl as she was going through uni, here's the link

    https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

    Looking forward to seeing you around
    Take care
    Yvonne x


    Hi Yvonne,

    Thank you! Yes I've applied to do a masters, so one more year of study :)

    I remember reading the spoon theory some years ago, its such a good way of explaining what chronic pain is like- its actually become a common thing for people with chronic illness to refer to themselves as 'spoonies' on social media like instagram and tumblr! Really good to read the original again though as I haven't seen it for ages, so thank you for linking me to it.

    Izzie x
  • gingerizzie
    gingerizzie Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Izzie and welcome :D

    What a lovely first post! As you'll see, we do have a 'Young People's Forum but it's really not used very much. Young people often come when first diagnosed (or even not yet diagnosed) or when going through a bad patch but don't usually hang around for long. Those who do tend to migrate to the Living With Arthritis forum as more people look on there.

    I've had RA since I was 15 (I'm now 72 :roll: ) and, like you, managed O-levels, A-levels and uni and I agree it's tough when you're young as no one really 'gets it'. And that can make it harder to turn down invitations and offers. I used to hate it when old ladies regarded me as 'in their gang'. NOOOOO! :mrgreen:

    I remember we had a 'Young People' group (I think it was Under 35s) in the British Rheumatism and Arthritis Association (which I think was the fore-runner of Arthritis Care but I'm not sure). We had a newsletter. I can't remember how often it came out. I did find it useful. I wonder if Arthritis Care would be interested in letting you do something similar. I also got together, briefly, with 3-4 other young women with RA who lived fairly locally but, of course, we all had RA so getting together wasn't too easy. Some couldn't drive; some couldn't get a babysitter; few could get out of other people's chairs :roll: It soon died a death. The woman who produced the newsletter, though, did write a book called 'Arthritis, at Your Age?' which can still be read freely online at http://www.dumville.org/aaya/ Sadly, Jill (Holroyd) died some years ago.

    My solution was to get right away from arthritis, do voluntary work (I was virtually unemployable once my sons were bórn) and so show other people that you could be young, have arthritis and still lead a more or less normal life. But, if you'd like to stick around here and help newbies (and oldies :wink: ) you are very welcome indeed.


    Hiya,

    Thank you for that lovely welcome!

    I can definitely relate to that, sometimes sitting in a waiting room in the rheumatology ward and being the youngest person there by about forty years can be a bit lonely (although I think most people assume I'm someone's daughter!). Its really good to hear that you've managed to live a mostly normal life, that's very encouraging and certainly something that I'm striving for.
    At the moment I'm having trouble just finding people my own age with arthritis. My uni has so many people in it I find it hard to believe I'm the only one but its often something people don't feel like they can share. Having a newsletter does sound like it could help to solve that problem though though, and would probably really fun to make, so I'll look in to that!
    Thank you for sharing that book with me, I'd never heard of it before but from reading the intro it seems promising. I hope you're doing well, and thanks again for such a warm welcome.

    Best wishes,
    Izzie
  • gingerizzie
    gingerizzie Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi Izzie
    It is lovely to hear from you, and brilliant that you want to encourage and motivate other young people living with arthritis. Peer support is the basis of the Young People and Families Service, which is active in a number of different areas across the UK. I manage the England Service, where young adult peer support volunteers co-facilitate services in the West Midlands, Greater Manchester, London and the home counties. The link below will give you an idea of some of of events and activities we offer young people and their families.
    https://arthritiscare.org.uk/our-services-and-support/events/filter:Young people and families
    If you would like to hear more about the service, and explore how you could perhaps get involved please do contact me at [email protected]
    with very best wishes
    Sally

    Hi Sally,

    Thanks for your reply, that's definitely something I'd be interested in so I'll look in to it and contact you ASAP!

    Best,

    Izzie
  • stickywicket
    stickywicket Member Posts: 26,243
    edited 30. Nov -1, 00:00
    Izzie, I googled 'Young People With Arthritis' and lots of stuff came up. The usual mix of good, bad and indifferent but I looked at one Guardian article (It was well down the page) and in it a young journalist with arthritis was writing about her experiences. The article mentioned 'Arthur's Place' which I looked at. It's a site for young people with arthritis and looks, at first glance, really good. http://arthursplace.co.uk/ . There's also a very well-established US blogger's site http://www.theragirl.com/. Some good info though, at 30+, I question the 'girl' and she does seem a tad angry :wink: Arthur's Place seems a lot more British :lol:

    Also there's a useful site https://www.disabledgo.com/ , not about arthritis but helpful if you are actually disabled by it. Please excuse my ignorance. Times have changed so much since I was diagnosed. Back then there were no modern DMARDS so deformities set in quite quickly. Now, when I go to rheumatology I'm the only one looking like me and that's a very good thing.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • gingerizzie
    gingerizzie Member Posts: 6
    edited 30. Nov -1, 00:00
    Izzie, I googled 'Young People With Arthritis' and lots of stuff came up. The usual mix of good, bad and indifferent but I looked at one Guardian article (It was well down the page) and in it a young journalist with arthritis was writing about her experiences. The article mentioned 'Arthur's Place' which I looked at. It's a site for young people with arthritis and looks, at first glance, really good. http://arthursplace.co.uk/ . There's also a very well-established US blogger's site http://www.theragirl.com/. Some good info though, at 30+, I question the 'girl' and she does seem a tad angry :wink: Arthur's Place seems a lot more British :lol:

    Also there's a useful site https://www.disabledgo.com/ , not about arthritis but helpful if you are actually disabled by it. Please excuse my ignorance. Times have changed so much since I was diagnosed. Back then there were no modern DMARDS so deformities set in quite quickly. Now, when I go to rheumatology I'm the only one looking like me and that's a very good thing.

    Hiya,
    Thank you for doing all this research, you seem to be a better google-er than me as I've never seen Arthur's Place before but it looks like an absolute goldmine! They also have a Facebook and an Instagram which seems very promising in terms of building a community. I had a look at the US blog as well; it seems to have some good stuff on it but I agree with you that it is a bit explosive, maybe a few too many exclamation marks :lol:
    I feel very lucky that I wasn't really aware of deformities when I was first diagnosed- actually I'd be surprised if 9-year-old me even knew what arthritis was, so I was spared that worry. And yes, thanks to DMARDs I've managed to escape with only slightly wonky fingers.
    Thanks again for taking the time to help me out, I really appreciate it, and I very much admire your attitude towards it all.
  • stickywicket
    stickywicket Member Posts: 26,243
    edited 30. Nov -1, 00:00
    Thanks, Izzie. I think I'm only trying to do the same as you ie trying to make my arthritis work for others. Good luck :D
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Moadiem
    Moadiem Member Posts: 1
    edited 30. Nov -1, 00:00
    I’m 31 and have had JRA since I was 2. I’m a RN/construction worker and just dealt with the JRA most of my life but this year I was put on medication. And Now winter is coming!! It usually gets bad in the winter. But I know how you feel. It’s hard to find community.
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hello Moadiem and welcome to the forums from the Moderating Team :)

    I am sorry to hear of your early diagnosis, but pleased you have found us now and am sure you'll benefit from the supportive atmosphere here.

    (Apologies to gingerizzie for the hijacking of your thread)

    Do please come along in and join in you will be made very welocme by the community.

    Ellen
  • felicityh
    felicityh Member Posts: 25
    edited 30. Nov -1, 00:00
    Hi Izzie! I don't know if you'll see this as it's been a few months since you posted this but I just thought I'd say hi! I'm 20 and have arthritis too. It is so hard to find anyone around our ages even though there definitely are quite a lot of us out there. I'm always here if you want to talk.
    Felicity x