Frustrating

I feel frustrated there are so many young people with this disease but there seems little awareness. There also doesn't seem to be too many young people on sites like this it makes you feel pretty alone. Also I wish I had got this awful disease in my 50's rather than when I was 20 (well I'd rather not have it at all). It's made life so challenging from such a young age and so I think there is a difference for someone getting this at an older age than someone much younger. For me it's the worry of having been on drugs for so long, the loss of movement in some of my joints making it difficult to do so many things like shopping or going on holiday. I feel very different to my friends who really have no idea. I know we all support each other and I am grateful just feel very alone having had this for so long and so young and not knowing why. Sorry this is probably more of a blog and a moan x

8 Replies

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  • Aww, please try not to feel so sad, although I do understand totally, I was older than you but only 28 years following the birth of my daughter, I'm 51 now, but exactly the same worries about the drugs, everyday life a painful struggle, feeling really poorly and in pain and no one can see it, the fact that you are so young and RA always thought of as an older persons disease etc etc, One of the most horrid moments that I always remember as hurtful was my mother in law being diagnosed with RA at 65, only a couple of years ago, and I un-intentionally made a comment that at least she wasn't so young when she got it and that at least she had lived a life until 65, she snapped at me that it doesn't matter what age you are, I found this really hurtful, to this day I have no idea how I looked after my baby or myself I just remember feeling so ill and in so much pain. When I was young I always felt RA as painful, debilitating, frustrating and most of all humiliating. After 22 years it is still all those things, even now I am the older person! I know this is easy to say and not so easy to do, but please do try to be positive, to look at what can and does help ie drugs, at what you can rather than you cannot do, most of all talk or blog it out, stay on this site it's great support. I do feel for you, take care xx

  • Unfortunately there are too many people full stop who are sufferers,

    My 16 year old son has been for RA tests and we are just waiting for the next appointment to find out deffinately , he does have signs of it.

    Keep your chin up, your in a good place here.

  • Morning Kittykat79,

    Im sorry that you are feeling frustrated, and agree that there needs to be more awareness of RA I think not only for the young but everyone as it is a very mis-named condition that causes incorrect assumptions. If we told them first off that we take chemo its funny how their reaction changes from that when you mention the word arthritis.

    It has certainly taken me a good 3-4years to start getting my head around the condition, how to manage and help, and also to question the medical teams as to which treatment is right for me rather than just letting them tell me what they believe is happening in my life.

    I found it hard and still do now to use sites like this, and ra related sites due to how depressing and down beat they can be, i fully understand we all get depressed and need to let off steam but we also need to help ourselves as there are things we still can do even though it might take us longer or more planning to do it, we still have a life ahead of us and it can still be a happy one but to keep this mindset myself I had to take myself away from negativity and learn to deal with the condition myself. I hate having to explain the whole time to people about our condition, even my family haven't got a clue - even this morning my mother has told me i'll feel much better is i have more vit C RRRRR really!! I've just had infusions and my immune system has been wipped even more thats why i feel and sound rough

    I hope that everyone finds a place that they feel happy and comfortable to be able to talk and in time with all of us helping to raise awareness I'm sure we can get there for future people that get diagnosed.

    I hope your feeling brighter soon x

  • Thank you so much, it's very true to focus on what you can do and I'm now on tocilzimab infusions, only had one so far but it has helped tremendously and I'm grateful for that. I think focusing on the good things in our lives is very important, I have a 2 year old and feel so grateful for him too. Sorry about my moan just needed to get it out of my system

    Thanks all x

  • Philip I'm sorry to hear about your son, I really hope he doesn't have RA, my fingers are crossed :)

  • There's no need to be sorry Kittykat79 and glad to hear your infusion seems to be working well for you. It is a tough ride with a young one, that is also now growing up as the afternoon naps sure did come in handy on my days off.

    Take Care x

  • Sorry it's a short reply but I want to show you this link to the Arthritis Care Forum. They have a section for young people with arthritis.

    arthritiscare.org.uk/forums...

    Hope it helps, it's bad enough having this illness because people don't understand it, so some one young, well it must be awful.

    Paula x

  • I can only say i feel for you having ra so young. Im 44 and was diagnosed age 42 and thought it hard.

    After reading about your frustration i now find myself actually feeling pretty lucky i was diagnosed at 42. No-one is ever lucky being diagnosed with ra but ive had my family and im older.

    I take my hat off to you not only coping with ra but having a 2 year old to look after.

    Take care

    Jo

    Xxxx

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