ps. I may need to review my definitions of sympathy and empathy, as looking into them now I realize what I said in the video doesn’t make perfect sense. The issue was this: I had to learn to be empathetic with my Lyme friends and be able to listen to them and truly care about what they are going through and try to help as I can, but all this without having it destroy me mentally and without identifying too much with their pain, simply because I know that pain too well and it could kill me if I let it. And because I don’t think it’s fair that I feel better and they don’t all. I created separate buckets in my mind, a bucket for my experience and my pain, one for my Lyme friends, one for how messed up the medical world is, etc., and I work daily at not mixing up all the buckets, as it could come at a great cost for my mental health. Voilà.
Concerning this article: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers (and many others like it that have come out this week with titles such as “‘Fear of exercise’ is biggest barrier to chronic fatigue syndrome recovery” and “Key to warding off chronic fatigue syndrome identified”, which are straight up lies)
It’s incredible how disconnected medical research and its media reporting can be from the reality of sufferers. I was told 12 years ago that I have some sort of chronic fatigue (called myalgic encephalomyelitis now, ME, or ME/CFS for chronic fatigue syndrome), and I know now that my Lyme infections are at the root of it all. Many ME sufferers do not yet know why they are ill, but that does not make their illness any less real or completely debilitating (and it is very likely caused by some bacteria, viruses, parasites, gut issues, environmental and chemical sensitivities, etc., etc.). I follow many people who suffer from ME on social media and I see the pain that this kind of irresponsible reporting causes. It also encourages even less understanding and compassion from doctors and society towards those who already suffer so much physical and mental strain from their illness. This is the first paragraph of the article:
“People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King’s College has found.”
Are you fucking serious? If you’ve followed me here for a while, I do hope that my story allows you to see and understand how offensive, hurtful and simply ridiculous that statement is. Appropriate exercise is very important and should be encouraged, of course, but ME is no joke and when you can’t, you CAN’T. It is maddening to be a slave to your ill body like that and fear of exercise has nothing to do with not being able to get out of bed.
It should be no surprise, I guess, that “when asked whether the illness was purely psychological, Professor Chalder (of Kings College) said: “I think everything is in the brain. Some people are going to say that, but we know that beliefs are incredibly powerful as are behaviours irrespective of the nature of the illness”.”
I agree beliefs are a huge part of the healing process, but would you approach a cancer patient and tell him that his fear of nutrition is the biggest obstacle in the fight to reduce his malignant tumour, when his body just doesn’t tolerate any food intake? I spent over 10 years working on my beliefs, behaviours, and on trying my best to exercise despite my very painful and exhausted body, and if I attempt to see any sort of correlation there, it’s that all my efforts have actually been inversely proportional to me getting better… but then I know that’s not how life or science works.