Dealing with Invisible Symptoms of M.S.

Many symptoms of multiple sclerosis are invisible to the casual observer. We aren’t 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, that’s a good thing. Who doesn’t 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.

That’s enough to contend with, but what if your family, friends, and co-workers don’t 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 — there’s 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. It’s not difficult to fall into that trap. In the long run, we are limited by how much we can change someone else’s thinking, but eventually, we’ve 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 we’ve 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 it’s 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.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a multiple sclerosis patient, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes.

Disclaimer: The views expressed above are solely those of the author and may not reflect those of
Care2, Inc., its employees or advertisers.

Michele W.

10:05AM PDT on Sep 6, 2011

Thank you

send a green star

KS G.

6:43AM PDT on Apr 7, 2011

Thanks for the article.

Amie K.

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!

Janice P.

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.

Bobbie H.

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.

Jean W.

1:28PM PST on Jan 26, 2010

HOW CAN WE GET THROUGH LIVING WITH CHRONIC PAIN SYNDROME, AND SEVERE SPINAL DETERIORATION FROM DISC;S AND FACET JOINTS WHERE CAN WE GET HELP, OUR LIFES ARE COMPETELY DIFFERENT AND WE LIVE WITH A DISABILITY, AND ALL WE KNOW IS PAIN DAY BY DAY AND WHO CARE FOR US, KNOWONE WILL HELP US, WHERE IS THE SOCIAL WORKERS TO HELP US THROUGH THIS DIFFICULT TIME, I HAVE BEEN BED RIDDEN FOR STARTING 5 YEARS DO TO MY WALKING AND SITTING JUST CAN'T GO WITHOUT PAIN, AND THE DETERIORATING ARTHRITIS IS TAKING OVER MY BODY, WHERE IS THE HELP FOR US WHO SUFFER IN THIS PAIN DAY BY DAY, NOW THEY WANT TO TRY AND NEUROSTIMULATOR INPLANT IN MY SPINAL CORD WHAT SHELL I DO, I'M AFRAID OF THIS, OR DO I GET ANOTHER FUSION, WHAT DO I DO ABOUT THIS, CAUS IF I GET HE INPLANT I CAN'T GET MRI;S OR IF MY HEART WOULD STOP, I CAN;T GET ELECTRIC STIMULATOR TO SHOCK TREATMENT, OR AND ULTRA SOUND IF NEEDED FOR SOMETHING ELSE, AND OTHER THINGS WHAT DO I DO,
I DON'T WANT TO DIE EIGHTER, WHAT DO I DO WITH THIS,
CAN ANYONE HELP ME THROUGH THIS, OR NOT, DO YOU HAVE ANY ANSWERS FOR ME.

Rebecca J.

2:28PM PST on Jan 12, 2010

very sad and a befuddling ailment. I wish for more medical info to become available with successful treatments and hopefully a cure someday!

Past Member .

6:43AM PDT on Aug 4, 2009

I remember when I was first diagnosed with MS wishing sometimes that a light would be above my head saying 'MS', because it's not always visible. I lost the feeling in one half of my body and it was a scary time, I wished my arm was bright blue, or covered in scabs or anything so people would avoid it, instead of banging into me. How do you explain that although it's numb, you can actually feel pain.....and you can't swing it out the way either !!

9 years on and I'm coping in the relapsing/remitting sense, got the feeling back in my body, only a little numbness remains now. So when I hear the line "But you look good", I think yeah, I do, I'm a lot better than I was and I know I could be worse.

judy k.

5:20PM PDT on Aug 1, 2009

THERE S ONE THING WORSE THEN BEING VERY SICK AND THAT IS NOBODY BELIEVING YOU AND EXPECTING YOU TO DO EVERYTHING YOU NORMALLY DO .

Elizabeth M.

10:58AM PDT on Jul 29, 2009

Fibromyalgia and osteoarthritis leave no outward mark on me. It gets old very quickly, having people look at me crosseyed when I say, no, I can't do that activity today because of fatigue or high pain levels. I DO look fine most of the time. I go to work and put on my 'work face', as I don't want to be seen as 'less than' in the workplace, or treated as if I am an invalid, which I am not. I just need to pace my life differently than others do, and appreciate when others understand that.