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Having an Invisible Illness

By Maya Brown-Zimmerman

How many of you know what it’s like to be living with an “invisible illness?”  Do you have a condition that affects every part of your life yet people assume you are fine because you look fine? I have Marfan syndrome, a genetic disorder that can cause problems in nearly every major body system. While there are skeletal manifestations, many times those symptoms are also found in the general population (just not all together), so you wouldn’t necessarily look at me and peg me as someone with a “condition.”

I don’t know how many times someone has made a remark about me taking the elevator, not “pulling my weight” or, my favorite, “you don’t look like there’s anything wrong with you.” While that is annoying, nothing has been as frustrating as the difficulty in being taken seriously by a doctor.

My mother knew there was something not typical about me shortly after birth. Although I was much longer than other babies in the family, needed multiple surgeries in my first year of life and was slow to meet physical developmental milestones, doctors continued to insist that I was just fine and that my mother was a paranoid first-time mom. Looking back, I’m pretty lucky that my pediatrician eventually recognized the physical manifestations of Marfan when I was 8 years old; too many “Marfs” don’t get diagnosed until much later in life…often in the ER when they’re having an aortic dissection (a tear in the large artery that takes blood away from the heart, which is always very serious and can be fatal) or in the morgue. Part of what makes Marfan tricky is that individually, many of the symptoms are common. These include being tall (but sometimes just tall for your family), very flexible, having a curved back (scoliosis) and having long fingers. However, when all these symptoms appear together in one person, it warrants a closer look and an echocardiogram to check the heart valves and aorta is necessary. There are no outward symptoms of potentially life-threatening aortic enlargement.

Of course, Marfan syndrome isn’t the only invisible illness. In November, I heard from many of you with fibromyalgia, a disease with no physical manifestations, which causes debilitating pain. Rheumatoid arthritis is another painful, hard-to-detect illness. My three-year-old son has autism and, much as people seem to think there is one, I’ve yet to find a mark on his body that reads “this is what autism looks like.”

So we need to try to keep in mind that we don’t know everyone’s struggle. That seemingly able person with the handicap placard might use it because fibromyalgia makes it too painful to walk, or because Ehlers-Danlos syndrome causes their joints to dislocate. The teen walking instead of running in gym might have a heart condition. That child having a meltdown in the grocery store may be having a sensory overload due to autism or sensory processing disorder. And if you think someone around you might have an invisible illness and not know it, don’t be afraid to gently speak up. You might save a life!

Do you have an invisible illness? How did you get it diagnosed? How do you handle people being less-than-tolerant of you because your disability is not readily apparent? Share your thoughts in the comments below or in our Chronic Conditions community.

Maya Brown-Zimmerman, MPH, is a patient advocate and volunteer with the National Marfan Foundation as a member of the board of directors and coordinator of the teen program. She also chronicles the ups and downs of parenting two sons with special needs while having a chronic illness herself at Musings of a Marfan Mom and the Sensory Processing Disorders Blogger Network.

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