The Invisibility of Disability

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Communicating the full impact of MS to friends and family is a daunting, and often frustrating, task. Looking fine and being fine are two very, very different things.  This concept rang especially true for our phenomenal contributor, Matt, so he wrote an amazing article titled “Please, Tell Me Again How I’m NOT Disabled”

Our community completely agreed and responded with abundant feedback. Here are just some of the frustrating experiences encountered by our MS community:

No, you don’t “understand”

  • I get easily frustrated when a close friend or a direct family member would say they understood, and then get mad or angry when I’m having a relapse.
  • I’m in the painful process of a relapse and my family doesn’t understand the facts of any of this. Especially the fact that NO ONE is more frustrated than I am.
  • If you don’t understand, at least be human and try. That’s all we ask.
  • Sometimes I want to scream, “Stop telling me you understand when you have no idea!” 

I might look fine, but I’m not

  • I look normal but feel destroyed inside.
  • When people tell me I look fine I just respond with “that’s because I don’t wear my brain and spinal cord on the outside.”
  • Had to “talk” to my relatives to tell them that just because you look normal doesnt mean you feel normal.
  • I just hate the “you look good” comment. What should I look like?

I’m not lazy!

  • When your support system doesn’t ‘get it’ and accuses you of laziness, it is infuriating. I hate not being understood.
  • I tell myself how pathetic and lazy I am. I don’t need to hear it from everyone else.
  • I can’t live up to your expectations. I can’t even live up to mine, and it’s so frustrating.
  • It’s amazing to me that people with MS have to fight so hard to “prove” just how disabling it can be

How about you? How has your experience been communicating to friends and family about your MS?

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Comments

  • Efrain says:

    Yes so true it gets me mad wend my wifey tell me just take a short walk get some air youll feel better omg i wish im having a hard time just trying to walk to the bathroom. Unbelievable we i just told her im in pain like what part of i cant walk far or im in pain or i dont feel well today so maybe its the same everyday or yes sweetie i look great today im feeling normal i want to run a mile its a MS not BS.

  • Jeannie Paul says:

    I have MS but getting my socal security has been a painful road, now I have to appee.al a second time. They have take my funds and my medicare.

    • Angel says:

      Hi Jeannie, thank you for reaching out. I’m sorry for the challenges you’ve had with Social Security, it can be a very challenging process indeed, and I wish you the best with the appeal and hope it’s a favorable outcome. Please feel free to reach out to the MSAA Helpline for information or resources if needed, phone (800) 532-7667, ext. 154. Take care and best of luck to you.

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