The Invisible Symptoms of Multiple Sclerosis
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. This was originally posted on Care2.com and has been reprinted with the author’s permission.
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My mother told me it was my fault I had MS. and My Aunt once told me to "make grandpa happy, and get out of the wheelchair" at his 80th birthday party- like it was a CHOICE or something. Ive been called a faker a liar, lazy- etc. etc. And i was paralyzed. spent alot of time in the hospital, I was disowned by my Italian Catholic Family- And I am living in another state trying to move on, and silence those toxic evil voices, I suppose there is a special place in hell for them, im not sure. All I know Is i Have 4 diseases, and they are all chronic pain ones and invisible ones. and it sucks.
I’m still in the process of being diagnosed, but so far all arrows are pointing toward MS. I’m 34 and in law enforcement, so I’ve always been very active. I’ve been in alot of pain the last several months and my mom keeps telling me I need to “control my stress level”. My workload is heavy, our finances are strained, among so many other obstacles in my life right now. My husband, two sons and I have not been on a vacation in over 6 years and we actually saved enough and have one planned in a week. My mom asked me this morning if we’ve cancelled the trip yet?! Too much of a financial strain. Too much stress. Oh, and the heat. Maybe she is trying to help, but she actually told me this is all due to my stress and depression and acts like I’m doing this to myself. She gets mad at me when I take a “sick day”, because she doesn’t get sick days where she works. I love my mom, but Stop Telling Me to Control Something That is Out of My Control!!!! I can’t control my case load at work. I can’t control how much I get paid and the bills piling in. I can’t control the pain or the tingling or numbness. She’s not up all night with me. Or seeing me curled up in bed in pain. Or the tears wailing up in my eyes because I’m tired of hurting and I’m just tired and want to rest.
I have Combined Sclerosis and to look at me you would think I was fit and well, my condition is very MS like and most of my medical friends have MS and I call them friends because we share the good and the bad warts and all, in many ways I think my condition is a blessing if at times very demanding.