I spend a lot of time reflecting on my past.
I think about everything going back to childhood, back to when I was a promising young student in the Gifted And Talented Educational (GATE) program in grade school.
I think about when I was first flute and third saxaphone in the band and all the things I achieved with very little effort back then.
I think about all the friends and sleepovers and fun times we had and how I could remember a face and a name and a phone number so easily thanks to my photographic memory.
I think about how I struggled through high school and then in college and how while I still got good grades, I had to work harder and harder for them. I had to force myself to remember things – simple things – which left me wondering what the hell happened to the photographic memory I once had.
I was barely into my twenties when I became too sick to continue school. I quit my second round of college while I was studying accounting. I had already gotten my esthetician license and was working part time as a facialist and massage therapist while trying to make it through my accounting degree, which was my real career goal in life, when I realized I was really sick.
Something was very wrong with me. I just didn’t know what.
Alone in my dimly lit facial room at the spa where I worked I did better than anywhere else. I could relax and breathe in the aroma of essential oils and listen to the gentle music playing for my clientele. I lost myself in the atmosphere and functioned pretty well. I was good at what I did and I loved it and my clients loved me even though I didn’t plan on making it my long-term career. It was just a means to an end and I would end up running an accounting firm in San Francisco, with an office that had a view of the bay.
As soon as I stepped back out into the world of bright lights, strong scents, loud noises and a flurry of activity I was sick again, though. Sometimes to the point that I couldn’t function. I would go back home and end up on the toilet for hours and then have to go right to bed, curtains drawn, no sounds, no scents and no life. I wanted to sleep for hours at a time, leaving my husband to pick up the slack which he gratefully did.
He stood by me as I went from doctor to doctor looking for answers. Was it this? Was it that? What was it?
No one had answers so I was referred to psychiatry. One pill after another, this type of therapy after that, and I wasn’t getting better. In fact, I was getting worse. Eventually I gave up.
Time marched on.
In that time, I lost ‘me’. By my thirties I became too sick to function completely some days and others I was fine. My symptoms were too crazy, too unheard of by a variety of doctors in a variety of fields, and too diverse not to be ‘all in my head’, I thought. At my worst I would ask my husband ‘what’s wrong with me’? And he would answer, while gently stroking my hair, ‘I don’t know, babe. Maybe you are thinking yourself sick?’.
I don’t blame him. It did appear that way. I would get so worked up emotionally because I didn’t understand that it was my immune system doing all these things and in the midst of degranulation it was hard to discriminate what was happening in my body. Deep down I knew, though, that the pain was real and the anxiety and emotions came second.
No one knew. Not even the doctors I trusted. They also thought it was ‘all in my head’. Over time I lost my ability to reason and I lost my will to advocate for myself for a proper diagnosis. One that wouldn’t even exist until 2007 anyway.
I was reminded how lucky I am today after watching Jennifer Brea’s TedTalk and her documentary Unrest. She has Chronic Fatigue Syndrome or ‘myalgic encephalomyelitis (ME)’ as it’s come to be called. It has no definitive cause or tests to run and no real agreed upon medicines to treat it. It is still thought to be psychosomatic by most doctors.
In fact, if you go to the Mayo clinic’s website on it, this is what you find:
Many people who have chronic fatigue syndrome are also depressed. Treating your depression can make it easier for you to cope with the problems associated with chronic fatigue syndrome. Low doses of some antidepressants also can help improve sleep and relieve pain.
The most effective treatment for chronic fatigue syndrome appears to be a two-pronged approach that combines cognitive training with a gentle exercise program.
My disease now has a name and has official tests and medicines and specialists. My disease is real and not just ‘in my head’. I won’t be sent to psychiatry again and I don’t have to worry that no one fucking believes me. Not even me.
People like Jennifer aren’t so lucky. Patients with CFS/ME are still being institutionalized against their will. They are still doubted and doubting themselves.
Thanks to my diagnosis I can finally put to rest all the questions of whether or not I am ‘thinking myself sick’. I can take my mast cell medicines and feel substantially better. I can stop regretting the past and realize that nothing – NOTHING – could have been different for me since they didn’t recognize MCAS until just ten short years ago.
I can let go of the anger and resentment and sadness about losing who I was and embrace the ‘new me’. I can look forward to hopefully getting better each day now that I’m on the right medicines and with doctors who believe me and are truly helping me find my way out of the madness now.
“It Doesn’t Matter What You Once Were. You Can’t Do It Anymore.” – Jennifer Brea.
She’s right but at least I have hope for my future and the person I can become now. I pray she gets here someday, too.