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?