I know a young woman who has had the illness described in the film Unrest since she was ten or eleven years old, and I know a teenager who has had it for a year now, but is just letting the news out. I also have a long-time internet friend who has it, and whose daughter has it. Jennifer Brea, who has it, and who made this film, says there are a million cases in the United States, and seventeen million worldwide. That is more that there are cases in the world of multiple sclerosis. Yet unless you know someone with it, you have very likely never heard of it.
The horrors of this disease are expressed in a few letters. ME/CFS is the sort of umbrella name. Myalgic encephalomyelitis/Chronic Fatigue Syndrome. The latter name is the most familiar. As the movie shows, there are jokes galore. It was not taken seriously for years.
But there are many other illnesses that people with ME/CFS may also have. You should see the hashtags that my 29 year old friend attaches to her Instagram posts. Here are but a few: Ehlers Danlos Syndrome, Mast Cell Activation Disorder, Dysautonomia, Postural Orthostatic Tachycardia, each one sounding worse than the other. And they are awful.
The people who have this, mostly women (85%) often refer to themselves as "Spoonies". The dictionary says "a disability metaphor - how much energy you have left to complete tasks before becoming exhausted".
People can be sensitive to sound, smell, air temperature. Sometimes they are unable to speak. They have "brain fog." Some, like my friend, get their nourishment through a port.
There is no day without pain. They often cannot remember what life without pain is like.
The film is available on Amazon Prime and YouTube. You may also buy the DVD. If you have never heard of any of this, the film will tell you what it is all about. If you have a friend with it, the film will help you understand the day-to-day hell which is their lives. The film educates and angers and makes one cry. We see the pain of those who have it, and the pain of those who love them. I can't recommend it strongly enough. This is a very important subject.
I had no idea. I will watch it and I'm sure have more understanding of the one person I know who lives with this. Thank you, Nan.
ReplyDeleteAnd I thank you for reading the post, and wanting to watch it. You are a good friend, Dewena.
DeleteA friend's late mother contracted this in her mid-fifties, and spent every other day in bed until the day she died in the late seventies. And you still hear people say "it's not real, they are just malingerers".
ReplyDeleteThat is the truth. Better now I think because of the internet. Probably the very best thing about being online is for these people to know they are not alone. They are all in it together. They all have problems being believed, and being treated correctly by doctors. Your friend's poor mother- that is so very sad.
DeleteHeartbreaking. I will look for it, Nan.
ReplyDeleteIt is.
DeleteIt is not that long ago that I read a series of articles about this terrible illness. The journalist met a teenage girl who was one of the few people willing to speak about her condition. Many times the scheduled interviews could not take place, as the girl was simply not able to do them.
ReplyDeleteAs far as I know from the articles, the cause for the disease is mostly unclear, although there might be some contributing factors as well as genetic disposition involved. In any case, reading about it has made me even more aware of how healthy I am - apart from my eyes - and how much I have reason to be grateful, and try to keep my health as long as possible.
They don't know the cause. It seems some or many have a bad virus before they get it. But I don't think all. There just isn't enough research being done. It is awful how little money there is to study this disease.
DeleteI have never heard of this. It sounds awful! Thanks for bringing this to our attention.
ReplyDeleteIt really is horrible.
DeleteI know about MS (in our family) but not about this disease. There is not enough money for research for chronic diseases, but there should be
ReplyDelete