How do you explain EM to family and friends?

I have had EM for 2.5 years. It is progressing quickly. Last week, I asked my doctor if he thought I might need a wheelchair for places like museums, shopping malls, etc. where I have to walk long distances. I was secretly hoping he would say I was overreacting and I wasn’t to that point yet. But he looked at me and said, “You do know this isn’t going to get any better, don’t you? I think a wheelchair is a good idea.” I knew he was right because I cannot walk long distances without extreme pain that brings me to tears and it takes hours for my feet to settle down. This week I purchased a wheelchair and put disabled license plates on my vehicle. It is hard not to get depressed about this. My 7 year old daughter is excited about the wheelchair because she thinks it will be fun to push me around. Okay, I’m glad someone is happy about it.

A lot of my friends don’t really know about my EM yet; the few that do know don’t understand it at all. I have always been very active. I love to play tennis and am still able to play a little in the cooler months. I have to stop every ten minutes to sit down, take off my shoes and socks, and spray my feet with cold water. After five minutes, I can get up and play for ten more. I can do this for about an hour. Then I have to stay off my feet for the rest of the day. So how do I explain to people who see me playing tennis one day and in a wheelchair at the mall the next day? Will they think I am just crazy? I am not someone who likes attention and I am sure I am just over-analyzing this whole thing, but I am concerned about how to explain this to others. Any tips?

I once had a friend who was using her disabled placard but was having a good day and could walk a bit. Someone challenged her as to her right to use the disabled placard, and she said, “this is what cancer looks like.” I think you can simply say, I have a rare pain disorder, some days are better (or some hours are better) than others. I don’t think people really want to know the whole story, so a short answer has helped me…

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“You do know this isn’t going to get any better, don’t you?"

First, your doctor is a douchebag for saying that. I had a doctor say something similar to me once. He said no one could help me. I went home and cried. Then my mom pointed out he couldn’t possibly know that when, by his own admission, he said he knew nothing about erythromelalgia. A few months later I proved him wrong. I did find help.

Second, just tell people you have a rare neurovascular condition that causes burning pain not dissimilar to a sunburn. Show a picture of a flare and most people get the idea.

I agree. Nobody can be sure there won’t be a cure one day or improve things. I have just said that on another discussion to someone. I said think back years ago there were loads of things that couldn’t be cured that can now.

I am not cured but far better than I was now they have found the cause. They kept saying it was nerve damage, but it isn’t it’s rheumatoid vasculitis and I am now having infusions of Rituximab and I am so much better.

I would say I agree with Michael’s (motherloves) response that in social situations, short answers are best. People often don’t have the time or patience to hear out the whole story and how the condition functions. However, for those close to you, I recommend you share an article written by Melissa Bogner. For me, I was able to relate to Melissa’s article more than anything I’ve read on the internet in the time I have had the condition. Of course, this might not be the case for you. While we all share the same condition, it seems to behave differently from individual to individual. I encourage you to read the article and if you feel you can relate to it, then share it with friends and family to help them gain perspective as to what your day to day life is like living with the condition. Hope this helps.

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