Darcy writes: I don't know why they think everyone with a chronic illness gets all this positive attention from everyone. Most people have pretty much left me alone, not rushed to my aid.
This is another of the common misconceptions about CFS: that people are "enabling" us by providing money and help so that we can take to our beds, thus encouraging us to continue "the sick role" while we "avoid responsibility". Nothing could be further from the truth for most of us.
Certainly, there are those few who are independently wealthy who can hire a houseful of servants, but most of us don’t have that luxury. Spouses and children can’t be in 24-hour attendance; they have work or school, or may themselves have the CFS virus. And that assumes that you’re not one of the 3/4 of chronic illness patients whose spouse bails – then you have no money and no help.
One of the more tragic parts of the CFS story is the number of people who are told by the government that their friends and family should be responsible for taking care of them, but are told by friends and family that it’s the government’s job. So, they quietly fall between the cracks because they’re not well enough to waste energy being The Squeaky Wheel.
And even if you have energy, you run into bureaucracy. It took me 5 years to finally get Social Services out to evaluate me. They agreed that I needed household help, but unfortunately, the law says that if you’re under 65, you cannot get government-paid housekeeping services just on your doctor’s signature. You need a judge to declare you officially disabled. If you are able to earn a mere $850 a month, you’re considered "self-supporting" and don’t qualify for an official determination of disability, but that $850 won’t stretch to cover the barest essentials of life, much less niceties like a weekly cleaner.
Some disabled people are fortunate, in that the charity related to their disability has enough volunteers to send them help. Unfortunately, many disease charities have all to do to raise research money and don’t have volunteers to send you. You may be just as disabled as the gal down the street, but because you have "the wrong disease", you fall through the cracks and get no help, because the charity that provides her assistance only helps those with that specific disease.
There’s another myth that churches are glad to send volunteers. If you haven’t been a regular church-goer, forget it; they only help their own. And even if you have, it’s rare to get volunteers for the duration of a chronic illness. They’re good about sending help for a week or two after the birth of a baby or a surgery, but I personally don’t know anyone in any of my support groups who has gotten a commitment for years. A friend and I contacted a number of churches, and never received a response from any of them. Someone else suggested to me that the religious high schools have a community service requirement; told me to call Brother X and Sister Y and tell them that Mrs. Z had told me to call, because she was sure they would help if they knew I was referred by a student’s parent. Again, I left messages, but never received a response.
In my own case, I was always the instigator. If someone else was sick, I made sure they got cards and phone calls and visits. When I was the one who was sick, no one else picked up the slack, because it had always been "my job" to organize such things. I was too sick to do the work, and it was sort of ridiculous to send myself cards and phone myself! I phoned my friends regularly until I realized that it was entirely a one-sided effort: they never called back if I left a message and if I somehow managed to get them live, they were "too busy" to say more than Hi/Bye. The friends willing to talk longer are those who are themselves disabled, who know what it’s like to be abandoned by healthy friends when you can’t keep up.
Although it’s been suggested that my friends "no longer help me because I wore out their patience with constant demands", the fact is, none of my girlfriends did anything even at the beginning. Zero, zilch, nada. Apparently just inviting them to lunch was too much of a "selfish demand"!
Just as Darcy observes: "people have pretty much left me alone, not rushed to my aid." If I was too sick to come out and play, they weren’t going to change their plans to accommodate me. It has always been made clear to me that if I could get myself over to the far end of the county to watch Johnny’s game, I was welcome to join them; if I felt up to coming along to jet-ski for 6 hours straight, I was welcome to join them. But if I didn’t feel up to doing anything other than talking, they were "too busy" to squeeze that in. I had to accommodate them, not vice versa. They don’t call to chat, they don’t drop in with casseroles, they certainly don’t shove their husbands and children aside to do my housework.
I think the myth was started by people who needed to assuage their own guilt about not helping by convincing themselves that there were lots of other people helping already, so their help wasn’t utterly necessary.
Almost every female CFS patient I know does her own housework as best she can, because there’s no help available from any source. Ironically, studies have shown that the CFS patient who receives as little as one hour a week of household help has a better chance of recovery than one who must do all the chores herself.