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Dealing with Invisible Symptoms of M.S.

Dealing with Invisible Symptoms of M.S.

Many symptoms of multiple sclerosis are invisible to the casual observer. We arenít all in wheelchairs or use canes, nor do we all share the same obvious symptoms. We often appear to be the very picture of health.

In many ways, thatís a good thing. Who doesnít want to look healthy, strong, and vital? In fact, some of us go to great lengths to achieve that healthy look. But the invisible symptoms of M.S. can also cause misunderstanding and lead to emotional stress.

Some of the most common complaints of people with M.S. are fatigue, numbness, and weakness– things that cannot be seen and often cannot be understood by those who have not experienced them at high levels. These seemingly benign symptoms can necessitate missing work, school, or social obligations, causing chores to pile up and misunderstandings to arise.

Thatís enough to contend with, but what if your family, friends, and co-workers donít really believe you? What if they think you are faking, or taking advantage of your diagnosis?

“But you look so good” is the phrase that in most circles is taken as a compliment, but people who live with invisible illness often view it as having a double meaning. We may be inclined to wonder if the real meaning was, “you look fine — thereís obviously nothing wrong with you, so why are you faking it?”

That kind of emotional mind game can take a heavy toll and even leave us to question ourselves. Itís not difficult to fall into that trap. In the long run, we are limited by how much we can change someone elseís thinking, but eventually, weíve got to make peace with ourselves.

We can do our best to educate those closest to us, to help them understand invisible illness. But at some point weíve also got to stop evaluating ourselves based on what others choose to believe. Not everyone will get it, and we cannot allow that to affect our own self-worth.

If we put in the effort to look good, perhaps itís best to accept the compliment and not concern ourselves with any hidden — or not so hidden — meanings. Ultimately, we live with our own truth.

If you love someone who lives with invisible illness, please take the time to learn all you can about their condition and really listen to what they have to say. Appearances can be deceiving, and not always a good indication of health status.

And one more tip — instead of saying, “But you look so good!” try “You look great… but how are you really?” A little compassion goes a long way.

 

Read more: Conditions, Health, Living with MS, Multiple Sclerosis, ,

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Ann Pietrangelo

Ann Pietrangelo is the author of†No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis and†Catch That Look: Living, Laughing & Loving Despite Triple-Negative Breast Cancer.†She is a freelance writer and member of the American Society of Journalists and Authors. Follow on Twitter†@AnnPietrangelo

25 comments

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4:47PM PDT on Apr 6, 2013

We began to lose our moral and compassionate compass with the advent of St. Reagan, who began to lose his own mind while president. Now, after generations being mind washed wth suspicion of anyone who is poor or has any kind of invisible or emotional/mental illness, is it any wonder that there is little to no help for those sufferers, including vets with both visible and invisible injuries? Friends don't let friends vote for Republicans.

6:07AM PDT on Apr 6, 2013

Pay attention to what's around us

9:37AM PST on Mar 5, 2013

tks

4:11AM PST on Mar 5, 2013

Thank you

9:34PM PST on Mar 4, 2013

Thanks for the article.

10:05AM PDT on Sep 6, 2011

Thank you

6:43AM PDT on Apr 7, 2011

Thanks for the article.

7:00AM PST on Mar 8, 2011

Those of us coping with MS are well aware of the 'but you look so good' syndrome because we get it all the time. For the most part people simply don't understand what it's like living with this disease. I appreciate people inquiring about my health but I would scare them away completely if I started discussing my symptoms in detail. I loved Marilyn G.'s comment and will be sure to use it in the future!

6:43AM PDT on Oct 10, 2010

Pain kills. Do not let anyone tell you otherwise. I know people, who have suffered from such constant, terrible pain, that they do not feel that their life is worth living any longer. My very best friend of over 30 years was one such person. By merely looking at her, one could not usually tell that she was ill. Pain is real. It is NOT in "your head". If your doctor tries to imply that it is, find a different doctor. Look for one until you find one, who understands pain and who is willing to help you deal with it, so that you can live your life in an optimal manner.

And, while we are at it, we need to demand a logical explanation as to why a single steriod shot in the spine for pain should cost $1,800. Those, who cannot pay that, will get no relief. One doctor quite recently told one of my friends, "You can't afford me". That sort of thing should NEVER happen in the US. We have money for warships, drones, fighter planes, foreign aid, and a myriad of other things. Why do we not have money to care for our own people? The US seems to have lost most of its morals, ethics, and conscience.

9:36PM PDT on Sep 14, 2010

Thank you for the informative article. I am dealing with chronic invisible illness and trying to figure out what it may be..MS is a high possibility.

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Disclaimer: The views expressed above are solely those of the author and may not reflect those of
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