1. Community
  2. Bones, joints and muscles
  3. Rheumatoid Arthritis

Did you/Do you tell people you have RA?

Posted , 8 users are following.

kim94523
kim94523

Hi RA Friends, newly dx-ed and have a question.  Did you tell people outside your immediate family/friends that you have RA?  For instance, did you tell people at work?  I told my bosses becuase I had to due to needing time off and also to explain frequent illnesses.  But I am wondering if I should tell my staff, who also sees me out often or leaving early.  By the same token, I don't want to be defined by my diease or be seen as someone who wears it like a badge.  I am struggling with wanting to explain myself but, conversly, not wanting to sound like I am making excuses for myself.  

I had a number of vaccines Monday, including Shingles/live vaccine.  My Rheumy required it in order to put me on Humira.  I was fine until Tuesday mid day, then I started falling asleep while sitting in my chair, on the train, at home in front of the TV (this has NEVER happened to me before.  I am the type who has to take sleeping pills to fall asleep.  I have NEVER spontaneously fallen asleep sitting up).  Then, this morning, I just couldn't get out of bed.  Stiff, sore, exhausted.  I told my bosses.  I have a call into my Rheumy but everytime something like this happens, I am compelled to tell people, but hold back thinking maybe I shouldn't.  If I had cancer, I would tell people.  I just fear people don't take "just arthritis" (which we all know this disease is NOT) seriously and so I'll sound like a whiner.  Then I thinnk, maybe I should give a brief description of what RA really IS when I explain that I have it.  Then I think - much like this post - that is just TMI.  Ugh.

Thoughts????  Advice???

1 like, 23 replies

23 Replies

Prev
  • Light
    Light kim94523

    Posted

    Try this:

    Never just call it arthritis, called it rheumatoid arthritis every time, and append that with "an auto-immune disease". Don't ever say anything less. That way they can't compare it to their sore knees. And if they do, just smile knowingly.

    Then, never be shy to tell them how it affects you, but try to do it in a very matter of fact way, as if you were talking about the weather, and then tell them all they need to know on each occasion – but no more –  without sounding sorry for yourself.

    That way, when youre very grounded in your own relationship to your condition and what its requirements are, I've found people accept it. They may not understand it – how could they? – but they accept it and are ready to make allowances.

    Then, never apologise for it, just take what short cuts your body needs and remind them from time to time that this is simply how it is. Like that perpetual rain that slides off our umbrellas... just what's happening right now, no one's fault.

    Good luck!

    • donna82193
      donna82193 Light

      Posted

      Hello

      I hope one day I get to your mindset. Its brilliant! Im still going through the mourning process. X

    • kim94523
      kim94523 Light

      Posted

      Light! You are luminous with your advice! Good idea! I also read on a site called RAWARRIORS that they call it and are trying to get the medical community to call it Rheumatoid Disease. And, yes, I know how to be clinical/factual and unemotional. My daughter was born with genetic brain malmormities unknown to us in utero. She was born very physically and mentally compromised and died at age 10 in 2008.... Two sentences to describe 10 years of heartbreak the kind a parent should never endure. So, yes, I can and will describe/name my disease briefly but accurately. Great advice!!!
    • Light
      Light kim94523

      Posted

      My heart burst a bit when you said that about your daughter. That must have been one of the hardest fires to walk through.
    • kim94523
      kim94523 Light

      Posted

      Thanks, Light... was, is, will always be... but it made me strong and she had a good quality life most of the time -- she wasn't sickly... just infintile her whole life but she laughed and was happpy a lot.  And her life allowed me to be present and helpful to help make social and gov't changes that now support other families with severely disabled children so her life had meaning.  A friend of my mom's pointed that out... that if it wasn't for Jessica, I would have never known about the subacute center that cared for her and never been an outspoken advocate to keep its funding in the face of budget cuts.  That gives me a lot of peace.  And that's how I am approaching RA... maybe I got this so I can do something good with it.  smile xo  
    • Light
      Light kim94523

      Posted

      That's good to hear, Kim.

      It's amazing how easy it is to forget the way in which our life trials can help us to be stronger and more empathetic.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.