Things gleaned from :https://www.facebook.com/TheMightySite/
and thoughts inspired by them.
This is from https://medlineplus.gov/:
“Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness.
People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest. ME/CFS may get worse after any activity, whether it’s physical or mental. This symptom is known as post-exertional malaise (PEM). Other symptoms can include problems with sleep, thinking and concentrating, pain, and dizziness. People with ME/CFS may not look ill. However,
People with ME/CFS are not able to function the same way they did before they became ill.
ME/CFS changes people’s ability to do daily tasks, like taking a shower or preparing a meal.
ME/CFS often makes it hard to keep a job, go to school, and take part in family and social life.
ME/CFS can last for years and sometimes leads to serious disability.
At least one in four ME/CFS patients is bed- or house-bound for long periods during their illness.”
People would rather go out and have fun instead of sitting around with someone who can’t.
With chronic illness, you are pretty much on your own.
‘Let me know if you need something.’ No. Ask me what I need. Better yet, offer to do something specific. It is very hard to continually be asking, and after awhile, people don’t want to be asked. If someone really matters to you, make that offer to do something specific. Or just call to say ‘hi’. If I ever mention not hearing from someone, they almost invariably say, ‘Well, you could call me.’ No, I can’t. I can’t make the emotional effort most days, I don’t want to be a burden, I don’t want to interrupt your life. I don’t really have a life. I’m just here, so you making the effort to call me, to remember that I’m here, it means everything. People just don’t get this.
Doing small things, like offering to fold laundry, pick up something at the shops, giving a ride to an appointment, taking out the trash. These can be enormously helpful to someone who does not have the energy to do them themselves. Or need what little energy they do have for something else. ‘If I fold the laundry, I will be too exhausted to make something to eat.’ Life with chronic illness is a trade-off. At least when you have any energy at all. ‘If I do this, I won’t be able to do that.’ Of course, there are a lot of days when you are in too much pain or don’t have any energy at all. Someone bringing you some prepared food is a major deal on those days. Very few people ever think to do this, however. Very, very few. Yes, there are meals on wheels. Have YOU ever eaten one? I have. More than one. I’d advise against it.
Dial-A-Ride services. Yes, they are great. The problem, for people with little energy, is that an appointment can take say 90 minutes, including transportation there and back. With something like Dial-A-Ride, it can take three or four hours. You have to be outside to wait for them, and that can be up to half an hour or more. They will get you there sometimes as much as half an hour early. After, you have to call them to pick you up, which involves more waiting, even as much as an hour or more, and sometimes they don’t bother to show up at all and you wind up calling and calling and calling, assuming you have access to a phone. Otherwise, you are well and truly screwed. This has happened to me. Before I had a mobile phone, I have had to walk several blocks up a snowy hill (walking is very painful, as is standing) to find a place with a phone. I have stood in the snow in agony for over an hour, the Dial-A-Ride van passing me several times til finally a driver stopped to ask why I was still there. No one had even sent out a pick-up for me. He had to do all his other calls before getting me home, so it took me three hours to get home after the appointment, and it took well over a month to recover. After that, I just stopped going places. I am fortunate to have a friend now who will drive me to appointments and back, and she is a true treasure.
‘Yes, you’re ill and in pain and exhausted and whatever, but you should still make the effort to reach out and ask for help.’ I find this remark offensive. In an ideal world, maybe you could reach out. But you can’t. You cannot reach out and ask for help, especially if depression is part of what is wrong. What the ill person ‘should’ do and what they ‘can’ do can be complete opposites. Why it’s an offensive remark is, it really just means that you out there don’t have to make any effort, it is left to the ill person to do that. The one who has no mental/physical energy to make any kind of effort. Not the best way to be a friend.
I’m not saying what’s mine and what are paraphrases of other’s thoughts, but a little anger and resentment have found their way into this post. I have been ill for twenty years now, and I have gone through rejection, dismissal, abandonment, you name it. A ‘little’ anger and resentment is nothing. And I am not the only one. People have been abandoned by friends and family, just because through no fault of their own, they have been injured or become ill. Compassion is a trait sadly lacking in my species, it seems. Among other things, but don’t get me started. 🙂