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“But you look so good”: Living with an invisible illness

I remember what it’s like to feel healthy and live carefree. I took my health for granted for the first 24 years of my life.

My nightmare began after I suddenly woke up one day thinking I had the flu, but it never went away. It was like my body suddenly stopped responding to gravity, and bizarre and debilitating symptoms kept appearing. I had never experienced anything like it. Two years later, after being poked and prodded and getting the crash course in medicine I never wanted, I was diagnosed with mitochondrial disease.

Now, it’s not always good and bad days -- but more like good, bad and tolerable moments throughout the day.

This awful disease affects every part of my body. I live with an energy disorder and everyday tasks tire me out. I wake up, brush my teeth, shower, and get dressed and am already exhausted. My lab specimens, which are routinely sent all over the country travel a lot more than me. (My other travel experiences are vicariously through the Travel Channel).

I’ve been at this rare disease thing for a while now. It’s hard to have a serious condition much of the world has yet to learn about, especially when at first glance I don’t look sick. When I say I have mito, I get, “What’s that?” instead of the sympathy you’d receive if people actually knew what it was. I’ve had more than a few medical professionals tell me they Googled mitochondrial disease before my appointment. Reassuring, huh?

With an invisible illness, people can’t see the symptoms I’m experiencing or what isn’t working correctly inside my body. You can’t see my dizziness, nausea, pain, GI dysfunction, fatigue, or muscle aches. You can’t see my low blood pressure or irregular heart rate; you can’t see my heat intolerance or breathing issues among many other things. I often worry about what others think; if they can’t see the illness many assume it’s not there. I’m self-conscious about this even though I try not to be.

I was working and finishing grad school when I first became sick and even though I hadn’t taken a sick day in more than two years one doctor told me I was wasting everyone’s time and should see a shrink despite the many abnormal test results that would have been impossible to fake. How could I be so sick when I looked so good? I often feel like I have to keep proving I am really sick. Very few see the “real” me. I try not to let illness define me, but it affects so much. I’m not going to lie: This illness holds me back more than I would like.

Overall living with illness has made me a better person: My experience has opened my eyes up to so much and  I have become more patient, caring and empathetic. But I wish so much suffering wasn’t involved.

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on this patient-focused series. Once a month, patients affected by serious and often rare diseases share their unique stories.

Lisa Parker has been living with mitochondrial disease and many associated conditions for over a decade. She has a masters degree in public administration and feels like she also has an honorary knowledge of medicine from living this journey. A Boston-area resident, she enjoys spending time with family and friends.

Photo by db Photography

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