There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here.
Hi, my name is Tasha and I’ve had ME for 20 years. Like many of us, my case started with an infection – a tropical illness I caught in Angola. For several years afterwards, my health went haywire. I would get regular throat and other infections with flu-like symptoms and I started to experience a new, extremely intense kind of fatigue, particularly after exercise or prolonged standing. No physician could figure it out and it wasn’t until almost three years later that I got diagnosed with ME. By year 5 after the start of my illness, I was lucky enough to have recovered to 95% of my former health. Maybe I got lucky with treatment, maybe the carefully paced lifestyle. Who knows? But just two years later, a few months after the birth of my daughter when I was a happy new mother, the illness came back – suddenly and unexpectedly and much worse than before. It was like having a familiar but completely different illness.
Because of the name “chronic fatigue syndrome”, people often think they can relate to this illness, but most truly have no idea what it really means.
- Because of this disease, I had to spend a whole year of my life in bed – and I mean lying flat on my back 80% of my waking hours every day. Waking up in the morning and hearing the chitter chatter in the street when the children went to school and adults went to work and still being there in that same place hours later when everyone came home.
- Because of this disease, I was not able to look after my own child. The physical demands of caring for a young infant meant that after a few hours I was so sick that I would have to call my husband to come home from work to take care of her.
- Because of this disease, I am disabled. I haven’t been able to walk more than a couple of blocks in 12 years or stand upright for more than a few minutes without being severely incapacitated afterwards, sometimes for days. I cannot do basic tasks of daily living like cook meals, clean, take public transport to work and I have needed a lot of accommodations in order to work at all.
I still feel inside like the young adventurous 23 year old I was when I got this disease. I instinctively want to do so many things I can’t – travel, play ping pong when I see people playing, dance at weddings, or walk to the coffee shop to buy myself a cup of coffee. But one thing does feel different about me from 20 years ago. I wish it wasn’t the case. And that is that I’m angry. I’m angry with the federal government and with the medical establishment. I’m angry at how our disease has been neglected and how we are being treated.
I am doing my part to make sure that if my daughter or my daughter’s daughter gets this horrible illness, that there will be a cure for her. I’ve managed to work, have paid taxes to the government, and have participated in a number of research studies. I just became a U.S. citizen last month.
But we’ve watched and waited and hoped for years now (and many patients have fought hard) – and the federal government has done next to nothing. When a serious disease is being ignored or overlooked, it is the role of the federal government to step in to level the playing field. In the case of ME/CFS, the burden of that responsibility should be felt even more keenly, given the damage the federal government has done by naming the illness CFS, expropriating funds, condoning unsafe and unhelpful treatment, and failing to raise medical and public awareness.
There are so many nasty illnesses out there but I believe that “chronic fatigue syndrome” is unique in the stigma it carries along with the lack of medical and public understanding. I can think of no other disease where the reality of the impact on people’s lives and the designated name and medical response are SO COMPLETELY out of sync.
It’s time for the federal government to step up by investing some serious research funding and run a sustained education campaign. Also, it is time to change the name. There is no excuse for delay. If we can’t agree and if we’re not ready for a permanent name, then we need a placeholder name. And we need it now.