If you have an "invisible illness" like MS, you know how difficult it can be to explain it to someone who has no idea what it's like. In the beginning of my husband, Cir's, illness, he was like that. He "looked good" on the outside - strong, handsome, healthy, to anyone he met and even to those who had known him for years, like his family who didn't live with him everyday.
And, I have to admit, it was sometimes difficult for me to understand what fatigue or balance issues felt like on an ongoing basis. When he had a full-time job and still helped teach a martial arts class, I felt jaded when we planned extra activities that he would cancel at the last minute. I would try to make him feel bad about disappointing the children once again when he made promises he couldn't keep.
He would make a really big deal about the decorative rugs I thought were so necessary to my decor scheme. Yet, when I finally "got it", I find myself in the same predicament, trying to explain the invisible symptoms that go hand in hand with multiple sclerosis to people who have no idea what it means to have MS.
What other types of symptoms are associated with invisible illness? Besides fatigue and balance problems, there are several other symptoms you can have and still "look great".
These are just a few of the invisible symptoms you may deal with and know one will be the wiser when they look at you. So how do you get your family and friends to understand what it means to have symptoms like these?
Tell them. Talk to them. Show them. Give them examples in a way that they can relate to. One way that Cir helped us to understand his balance problem was like this. Have you ever walked on a mattress when you were little? It was funny when you almost fell over, and when you did lose your balance and fell, bouncing on the mattress it was even funnier.
Not so much when you have MS. When you feel that way all the time - like every step feels as though you are walking on a mattress, then, no, it's not so funny. Nor is it safe. Fatigue was a little more difficult for us to understand and took more than an explanation.
When I developed congestive heart failure, and took medication that induced fatigue, I realized how debilitating it can be. I wasn't able to do anything for weeks. Although I had come to terms with Cir's fatigue long before that, I totally got it after my illness - well maybe not totally because I don't have it anymore. But it was very clear that fatigue is no laughing matter for someone who has to live with it almost everyday.
Having an invisible illness can be very depressing and cause you to remove yourself from situations where you need to always explain what's happening. Or it can keep you from living the life that you want. If you turn down or cancel invitations to events, and refuse to make plans because you don't know if you'll be able to keep them, this can make depression worse.
But how do you make it work? Over time, and with the support of family and friends, Cir has learned to do just that. He still occasionally has to cancel, but he doesn't beat himself up about it and I've learned to take it in stride. There will be other events, and when he has good days, we take full advantage of them.
We don't always try to make people understand. Why? Because it doesn't really matter that they do. What matters is that Cir is able to live his best life without the stress of dealing with people who don't matter in his life. And those that do matter, they'll eventually get over it. It may sound harsh, but he doesn't need the stress. He does what he can, when he can and we're happy with that.
Also, here is a blog - Invisible Multiple Sclerosis - I just ran across that deals specifically with this issue. It may help answer your questions even more. The blogger, Suzanne Robins, has also written a book on the subject.
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Cir & Akrista
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