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Arthritis

courteneyoliviacourteneyolivia Posts: 4Member Listener
hello! I was diagnosed with rheumatoid arthritis at the young age of 8 years old and I’m now turning 23. I’ve been through some serious ups and downs this year and have resulted in counselling. 

My councillor has advised I join an online group to talk to people suffering similar conditions to hear their stories and talk things through so that’s essentially what this thread is? An online group counselling I guess idk

Replies

  • KG100KG100 Posts: 172Member Pioneering
    I had RA at a young age as well, also Sjogrens now which seems even worse. 
    There's also a group on the RA site on facebook. 

  • courteneyoliviacourteneyolivia Posts: 4Member Listener
    I’ve never struggled before these recent years so it’s almost like being diagnosed for the first time and I’m struggling to cope a little now. I’m being referred for rituximab in September and I’m terrified tbh
  • KG100KG100 Posts: 172Member Pioneering
    I find the best way to cope is to think that all the treatments we go through helps us in some way.
    The wait for my operations for my plastic knuckles almost drove me mad, I worried all the time, but when they were over I thought it was well worth it.
    I've never had that rituximab though, but I think it's what my dad used to have at the local hospital. 
  • MisscleoMisscleo Posts: 551Member Pioneering
    I also was 8. Strange!..
    When told I had arthritis 
  • Adrian_ScopeAdrian_Scope Posts: 2,427Administrator Scope community team
    I'm sorry to hear your year's been so all over the place @courteneyolivia, but you're very welcome here and we'll do our best to support you.
    How are you doing today?
    Senior Online Community Officer
    Scope
  • courteneyoliviacourteneyolivia Posts: 4Member Listener
    @Adrian_Scope thank you! It’s hard to talk to people at work or friends cause they never really 100% understand what I’m trying to say and a lot of my friends are doctors or physio’s and even then it’s hard bc they don’t feel it yaknow? X
  • KG100KG100 Posts: 172Member Pioneering
    I always had my dad to talk to, he had the same health problems as me but at a more advanced stage at that time.
    He also had operations on his hands but about 30 years before I did.
    I have to agree that it's very hard talking to people about RA who don't really understand it.


  • Adrian_ScopeAdrian_Scope Posts: 2,427Administrator Scope community team
    Hi @courteneyolivia. I think a lot of people feel like that. Have you tried looking at support groups in your local area, or taken a look at Versus Arthritis?
    Senior Online Community Officer
    Scope
  • courteneyoliviacourteneyolivia Posts: 4Member Listener
    KG100 said:
    I always had my dad to talk to, he had the same health problems as me but at a more advanced stage at that time.
    He also had operations on his hands but about 30 years before I did.
    I have to agree that it's very hard talking to people about RA who don't really understand it.


    Sometimes get looks that make you feel like you’re milking it even when you’re not 
  • KG100KG100 Posts: 172Member Pioneering
    We have to remember though that not all illnesses stand out for people to see.
    No one can see my heart operations scars so don't really understand about those but they can see my hand scars and twisted fingers.
    I think they accept me as being disabled by looking at my hands but totally ignore my knackered heart simply because they can't see it !!
    With age now though I no longer care what people think of me. 
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