The grassroots ME Action Network
recognizes August 8 as "Severe ME Awareness Day." You may be surprised how many people in your life are, like me, struggling in silence with an invisible burden. The Centers for Disease Control and Prevention estimates up to 2.5 million Americans are suffering from ME/CFS, with many cases undiagnosed.
I'm even more grateful for the life I have, knowing how this disease could have taken me down a darker road. So today, I lend my voice to those who suffer from one of the most debilitating diseases many people have never heard of.
The real story of my life began when I was 16, busy constructing a resume I hoped would lead to Princeton or West Point.
I had just completed a summer abroad studying writing and philosophy at Oxford. I became an Eagle Scout, student council president and a captain of my school's cross country team. I was loaded up with Advanced Placement courses and I was a member of a student team working with NASA engineers.
I didn't have time to be sick.
But one day after school, I came home and slept for 16 hours straight. I did that each day for two weeks, until I realized it would be impossible to go to school at all anymore.
My body felt like dead weight. I had flu-like symptoms, severe headaches, and my brain felt so foggy it was impossible to read more than a couple of sentences.
Through my high school's "hospital housebound program," three teachers filled out the rest of my academic year with house calls to instruct me and administer tests, sometimes at my bedside.
For six grueling months, I didn't know what was wrong. It took visits to 16 doctors from a litany of specializations to finally identify the illness stealing my life.
But among ME/CFS patients, I consider myself lucky. Twenty-five percent of patients spend their lives bedridden
. Some become so sensitive to light that they must live in darkness. Many lose the ability to eat solid food or to speak. One patient told me that simply taking a shower feels like running a marathon.
'The bad news is you're not going to die'