The age 21 was the peak of my life. Well, at least the peak of my energetic life. I was in the top of my class at a highly competitive design program I’d been preparing to get into since I began high school. I lived independently, had an active social life, taught a college course, and ran marathons. I even moved to the slums of Argentina for a year to serve the poor.
When I think of the ‘me’ I was at the beginning of that year, I hardly recognize her. I think of the stories like they were of some other person who I hardly knew; my life is so different now I can hardly comprehend a comparison.
The ‘me’ at the end of the age of 21 is more understandable. Hardly able to function, too sick to fulfill commitments, friendships turned awkward. Yeah, that’s sounding more like the ‘me’ I know now.
Half way through my planned trip to Argentina I began to feel sick. Within weeks I was too sick to fulfill my service obligations and within months I was so weak I could hardly function. I visited Argentine doctors and when they couldn’t figure out what was going on, I visited a British hospital in a nearby city. When they failed to help me I was flown back to the States where I was treated in one of the top hospitals in the world. It didn’t matter. They still found nothing.
At this point I’d been sick for almost 6 months. I’d lost all ability to live my life and all the doctors could tell me was that my lymph nodes where swollen and my autonomic nervous system wasn’t working properly. But they didn’t know why or what to do about it. They told me to go home and wait- that I’d probably get better on my own.
Well, that was in 2005 and I’ve been sick every day since. Sometimes I’m tempted to send those doctors a postcard just to let them know I’m still waiting :).
Because the doctors were unable to find the cause of my fatigue I’ve been diagnosed with CFS (Chronic Fatigue Syndrome). My autonomic problems have been diagnosed as POTS (postural orthostatic tachycardia syndrome) a condition commonly paired with CFS. I am legally disabled, unable to hold a job and, quite frankly, almost always too sick to even mop the floor.
So, why am I telling you all of this? Mostly I just want you to believe me.
It might be hard for you to comprehend, but the majority of the conversations I have end with the other person hearing the words ‘Chronic Fatigue Syndrome’ and rolling their eyes as they make an excuse to leave (that includes doctors). Apparently, anyone claiming to have CFS must be crazy. I am disrespected and disregarded on a daily basis. I am openly judged so often it hardly phases me any more. When I need serious help, I find that it comes easier and with more respect if I flat out lie about my health problems than if I tell the truth. Our world is just set up better to accept my lies than it is to believe my reality.
And you know what, that’s pretty stupid.
Chronic Fatigue patients need good doctors to help alleviate symptoms. They need scientists to search for better meds and physical therapists who can help them find their life again. It’s true, we need a lot. But before anything else, we need you to believe us. If enough people could just believe that this illness is real, it could finally be taken seriously. If people believed, everything else would follow. It is something so small- it costs you nothing. But to me, and the hundreds of thousands suffering from debilitating fatigue, your belief could be life changing.
Today is Chronic Fatigue Awareness day and all I ask is one small thing; Let’s start believing.