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A MyMSTeam Member asked a question πŸ’­
London, UK

What do you say to people when someone says to you "you don't look ill or poorly"?
I'm out of answers ms family please help lol πŸ˜‚

June 1, 2017
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A MyMSTeam Member

Since MS is the autoimmune system attacking the Myelin sheath around the nerves, like the insulation around a wire, I tell people it is like being short-circuited. This is an image some people can see.

June 4, 2017
A MyMSTeam Member

I made the mistake of sharing my diagnosis in a previous life. I have since asked those still in my life to not share this information. It's best kept private. If someone asks why do you go to the cancer center for meds. I say, I have a medical condition that requires it, and I don't share my personal medical diagnosis. Everyone has something. People don't tell me when they have Hep C or Diabetes, nor do I ask. Helps me live a life where I'm not the wife, friend, sister or mother with MS. I am ME.

June 2, 2017
A MyMSTeam Member

They are trying to cheer you up. They know you are sick. And take it as a complement .

June 2, 2017
A MyMSTeam Member

I've found that many people don't have a clue what MS is. And if I try and explain it they just look at me like they are trying to understand but I know that they don't at all. Sometimes I say I get really tired and my friends say "yeah I know what you mean, I'm tired a lot too".
Nope, they won't ever really understand unless they have MS so I just let it go. 😊

June 1, 2017
A MyMSTeam Member

Don't get me started on this one! Lol! I've had 27 years of people saying, "you don't look ill", "are you sure it's ms?", "Surely if it was ms, you'd be in a wheelchair by now", "I wonder if it's psychosomatic", etc etc. I used to get quite upset by my family and friends questioning me. It used to make me feel like they thought I was making it up and just being lazy. Time has helped me to understand that family couldn't cope with the negative and it suited them to think the ms diagnosis was one big mistake. If only! I've had to come to terms with the fact that some people just don't want to know, and that's ok. So if someone says that I don't look ill nowadays, I just say thank you. I'm not wasting my energy trying to persuade anyone any more.

June 1, 2017

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A MyMSTeam Member asked a question πŸ’­
Nottingham, UK