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Body Image and Multiple Sclerosis

Author: Pamela Martin
Published on: Sep 1, 2000

"Mirror, Mirror on the wall, who’s the most hideous of them all?"

I’m only half-kidding when I pose that question to my own reflection. In the years I’ve lived with MS, the pounds have slowly crept up on me like a pair of shoddy polyester pants. More often than not, I barely recognize myself as the woman I once was. My muscles are no longer strong and supple; my energy level is non-existent. Step aerobics and treadmills are now a distant and fuzzy memory. For the first time in my life I now count calories (horrors!) in order to keep my weight from ballooning. It occurred to me—with a shade of sadness and a tinge of amazement—that I don’t even remember what it feels like to walk without a limp or a cane! As I watch the changes my physical body has endured, I feel as if I am trapped inside a condemned building and can’t get out.

In many ways I’ve accepted multiple sclerosis as a part of my life. But all too often, it’s really hard for me to look in the mirror and actually like what I see. I’m more likely to wince at my image rather than to give myself an affirming smile. How did I become so adversarial with my physical self? And better yet, how can I continue to love my body when I so often feel betrayed by it?

A Weighty Issue

According to Sandra Cole, Ph.D., director of the Sexuality Training Center at the University of Michigan Medical Center in Ann Arbor,

"A disability shatters our image of ourselves. Changes in how the body looks, loss of independence, diminishment of a traditional role—all of these can impact on our image of ourselves…"¹

Truer words were never spoken. The sheer number of MS symptoms and side effects from medications can cause fundamental changes in how my body looks and feels. It’s no wonder that the reflection I see in the mirror is at odds with the image of myself in my mind’s eye. Symptoms such as spasticity, tremors, weight gain, foot dragging, muscular weakness, and fatigue can virtually change the visual appearance of the body. Add to that the emotional dimension of living with chronic illness—guilt, denial, depression, and anxiety—and it becomes even more difficult to view a body affected by MS in a positive light.

On one hand, I realize that when I examine my body in such a critical way, I am creating negative energy for myself which is completely counterproductive to striving for wellness. On the other hand, learning to love a chronically ill body is easier said than done because the issues can be emotionally complex. Of course, a mental health professional can be an enormous asset in helping to work through body issues. But on a more "self-help"-inspired note, I’ve discovered a couple of strategies that have been helpful to me in reaffirming a positive concept of self, regardless of my current or future level of disability.

Realization, Meditation, and Appreciation

Personally speaking, I realize that most of my body image issues are a result of my need to always be in control. Before MS, I considered my personal fitness goals as proof of my ability to maintain control over my body. I felt strong and capable, not just physically, but also in terms of emotional willpower. For me, one of the hardest things about multiple sclerosis is to stop fighting my illness and just learn to live with it.

According to Salt Lake City neurologist Jack Petajan, who has been caring for people with MS for 36 years:

"A fight for control is exhausting. The fact is we can't, at this point in time, force MS to go away. Meditation and similar techniques teach people to be in touch with their bodies, to appreciate and permit whatever one can or can't do, right now. This doesn't mean tossing out self-discipline. But it does mean letting go of all those 'shoulds' and 'musts' that can cause so much distress…People with MS, whose condition is changing all the time, need to be masters of this kind of awareness." ²

Become a master of awareness? I think I can handle that. I certainly realize that I’m engaging in self-defeating behavior when I focus solely on what my perceived "flaws" are. But how much thought have I given to the incredible miracle that my body is still capable of? Once I realize my mental blocks, how do I work toward the goal of appreciating my body?

One way that I work toward a more positive image is to treat my body well. I have evolved from classic "meat-and-potatoes" meals, to a more balanced, low-fat and nutrient-rich diet. I consult regularly with my physicians, and make them an active part of my approach to wellness. I listen to my body, and when I’m feeling tired, I give it the rest it requires. Just as with anything else in life, you tend to appreciate more those things that you make an effort to take care of.

To illustrate the idea of body appreciation, Dr. Debora Burgard of BodyPositive® offers some interesting insight on the subject:

"So much of the time we are either taking our bodies for granted or actively disparaging them. And yet they keep serving us, day after day. Take a few moments to think about how your body has been loyally functioning on your behalf, and write anything you'd like to share with others."³

Great advice! So, I thought I’d give it a try; meditate and share my (partial) list with you. Even though I may no longer be able to dance all night or climb a flight of stairs, I surprised myself with all of the wonders my body still holds for me. In the past month alone, my body has:

Touched and held my newborn niece
Enjoyed the feel of a soft summer wind
Created and produced this article
Planted loving kisses all over my husband’s face
Tended a window box of bright begonias
Healed a wound
Hugged my daughter
Laughed at a child’s antics
Wrapped a birthday present
Ate a scrumptious meal
Slept peacefully

At first glance, the list may seem a bit mawkish and trivial. But I truly enjoyed doing every item on that list. How mundane and empty my life would be if those moments were absent! By concentrating on my list, I can remind myself that my body is still worthy of praise and reverence, even as it falters in other ways.

My daughter recently asked me: "In your dreams, do you limp with MS or are you healthy and ambulatory?"

An interesting question. Generally when I dream about myself, I somehow know that I have MS, but I am able to walk and run and do all the things I once did. It’s almost as if my unconscious, dreaming self has reconciled my conundrum by merging the two visions of my body image into one.

Ah, the beauty of dreams! Another reason to appreciate my body.

For Further Reading:

¹Hendley, Joyce FACTS & ISSUES: On Sexual Problems Your Doctor Didn't Mention © National Multiple Sclerosis Society, 1996.

² Excerpts by: Martha King, Director of Publications, National MS Society; Linda Morgante, RN, MS Center, Maimonides Medical Center; and Jane Harmon, O.T.R.Sources: Fall 1995 and Fall 1996 issues of INSIDE MS FACTS & ISSUES: On Fatigue © National Multiple Sclerosis Society, 1997

NOTE: This article is intended for general information purposes only. You should consult with your physician or other health care professional for specific advice on your personal health care choices.