When Your Appearance Is Unchanged by Your Changing Health

When I first heard my doctor’s diagnosis, my pulse quickened and my eyes closed as my chin dropped to my chest. I repeated the words multiple sclerosis over and over in my head. I took a deep breath and immediately thought of my mother, who had struggled with multiple sclerosis (MS) prior to her death. I thought about my husband and my young children — my son and daughter who were 8 and 6 years old, respectively. I remember feeling too young to have a chronic illness for which there is no known cure and the cause is unclear. At 42 years old, I fearfully thought about my own mortality.

At the outset, I was diagnosed with relapsing-remitting MS, the most common form of MS, where my symptoms were mild and manageable — at least initially. I experienced a wide range of symptoms which included tingling and numbness in my extremities, heat sensitivity, balance issues, problems with coordination, spasticity, bladder control issues, and cognitive issues with concentration, memory and problem solving. The only certainty was the unpredictability of not knowing which symptom I might experience next.

Over time, some of the changes I have experienced have been subtle, almost unnoticeable both to me and to my family. Other more noticeable changes (like my forgetfulness and significant lack of recall) are the result of the progression of the illness to secondary-progressive MS, a more severe and debilitating form of the disease. As a result of this progression, I’m painfully aware of life before my diagnosis and life after.

But even after all these years, despite the progression of my MS, I still look fine on the outside. Like many people who live with a chronic illness, my disability is not always physically apparent to others. While I like people thinking that I look good and that I look healthy, there is a feeling of incongruence with their perception of me based on how I look, and my reality based on how I feel.

On a typical day, I feel a constant dull aching pain in my leg. At times, this pain is more pronounced. I am shadowed by a lack of balance and have recently been falling because my knee keeps buckling. I experience periodic muscle spasms and muscle cramps. There have been times when I have had trouble walking and people thought I was drunk because of my balance issues and limited mobility.

Yet in general, people perceive me as being unencumbered and healthy because my appearance is unchanged. I recognize that it’s a natural human tendency to jump to conclusions based on what you see and to believe that to be true. Unfortunately, people often assume that if they can’t see it, then there really isn’t anything wrong. This often leads me to feeling like I need to “perform” being healthy and happy, despite shouldering MS as a constant and oppressive weight. When someone asks how I am, I smile and say I’m fine. If someone asks about my health, I change the subject and briefly talk about something else, often with a wave of my hand.

While an MS diagnosis is difficult for anyone, for me it was personal. My mother was diagnosed with MS when I was 10 years old. As a child, I remember that she struggled with her illness. A school librarian, she initially parked a few blocks from the school where she worked. As her condition deteriorated she needed to park closer and closer to the school, allowing more and more time for her walk to the library. Yet, even then, I remember people treating her as if nothing had changed for her because on the outside she looked the same. She struggled many years in silence with a smile on her face, and only now do I understand how awful she must have felt.

Like my mother, I have experienced many of the symptoms of MS. To me, one of the most stressful and emotionally draining things about having MS is the invisibility of my pain to others. It is very difficult to feel sick on the inside, while looking good on the outside. This paradoxical and sometimes uncomfortable “catch-22” situation is one of the hardest things about living with an invisible chronic illness.

When I was diagnosed with MS almost 20 years ago, I thought about my mother and my family. It did not occur to me, though, that I would face friends and family (and even strangers) thinking that I looked healthy, and therefore assuming that I felt well. It also did not occur to me that I would find myself downplaying my symptoms to meet their expectations.

But I’ve learned the truth the hard way: Looks can, in fact, be deceiving. It is estimated that there are more than 400,000 people living with MS in the United States. Coincidentally, almost the same number of people have completed a U.S. marathon. This means that you are just as likely to see someone affected by MS as someone who has completed a marathon. Yet, most likely, you won’t know which person is which — you won’t know who silently struggle.

My hope is that as you read this article, you walk away with an understanding that if you know someone with an invisible chronic illness, you recognize that while they may look healthy, they are likely quietly struggling on the inside and would appreciate your understanding.

Getty Image by tatarnikova