I chose this book from a giveaway of a number of free books. The sub-heading 'A Mission to Solve an Invisible Illness' drew me in, as I also suffer from one. I was stunned on reading to find that the author has the same illness as me, M.E./CFS, which I have had for eighteen years. Having an invisible illness is horrendous enough, but having M.E./CFS is like wearing one of Harry Potter's invisibility cloaks. Not seen, not heard, not believed, "You look fine!".
The author is based in the USA and I am in the UK, but our stories of doctors and hospitals are very alike. I found myself nodding in agreement quite a bit at their utter insensitivity. For example this, when describing an uninterested doctor: "It made me angry how dismissive and apathetic she was about something that has taken over my life. And now she gets to move on and go about her job, dismissing her patients without any consequences." This could describe my experience, too. My uncompassionate doctor, the one who wrote "tiredness" on my sick notes and made me drag myself out of my house to travel to see her on a weekly basis.
There are some fantastic descriptions of how unkind and hurtful people can be through their words. They (probably) don't mean it, it's just complete ignorance on their part, like this one: "The other day, Rita came by my place, saw me resting in bed, and asked, "Do you sleep all the time because you're bored?" She might as well have asked Michael J. Fox if his hands tremble because he's scared." Oh, Jamison, you've hit the nail right on the head there. The one thing that is essential that you keep from your life 'before' the illness is a sense of humour, and the author certainly keeps his.
He writes with feeling, expressively from the heart and very well, with an honesty that lets his bright personality shine through. A young man who has had to (physically and mentally) feel the grief of the 'death' of his active, healthy life, the loss of his independence and earnings, reliance on the state for benefits, and his (exceptional) mother for physical assistance and nourishment is so demeaning. Having to 'accept' that he is very ill, in constant pain with no energy, totally disabled, and that he will never lead an active life again. I understand fully, but I wonder how healthy people reading this would deal with that, or the fact that you will never get the strength of medicines you need for the pain. Because the doctors say so. Never mind that you are suffering.
I admire Jamison for his inner strength, his determination, for writing this book on his phone when he could spend his valuable energy on something else. He is helping everyone with M.E./CFS, to allow those uneducated in our illness in the 'outside' world to be illuminated into our 'dark and silent' one. A home can be a place of safety or a prison (as I'm sure a lot of people during the lockdowns have found out). Thank you for your powerful words. I hope, with all my heart, that science makes enormous steps forward as a result of the similarities with Long COVID, and a cure is found for our illness. I, for one, would put you at the head of the queue to receive it first.