I have not read it myself, but trust LK.
"Strong at the Broken Places"
by Richard M. Cohen
I can't say that this book made me feel better.
It actually brought me to tears multiple times.
But it also brought to the forefront that many, many
people are chronically ill for many, many reasons.
And as a result, each of us feels like we are somewhat less of a person.
And we are all alone. And we will all ultimately die.
But it also shows incredible individual courage in
the face of adversity and public ignorance,
on keeping hope alive, and
on finding strength and peace under the most difficult circumstances.
"We are strong at the broken places, stronger than we think."
Read it for inspiration.
LKWoodruff
* * *
Even if you start out not feeling bad about feeling bad, other people will MAKE you feel like less of a person for being disabled. Friends will take umbrage if you have to cancel plans because you don't feel well. Spouses will make sure you know they feel put-upon because your illness makes them carry more of the load. And doctors will bully you to prove that you're not just lazy, even when continuing to work makes you sicker. In some cases, you'll run into doctors who will blame you for your illness and blame you when their magic pills don't work.
You'll get "should"s loaded on you, and when you can't keep up with what other people think you should be able to do, they'll make you feel like a failure.
Resign yourself to the fact that people will see what they expect to see. If they think you're healthy, they will expect you to keep up the pace, and make you feel guilty when you can't. But one of my biggest cheerleaders nursed a dying husband. Where other people think I should be doing more, she knows that some days getting up and dressed is all that can be asked of a sick person, and she cheers along with me when I report that I didn't get the laundry done, but I did manage to do half an hour of stitching -- other people would only see that I didn't do the laundry and give me grief over "accomplishing nothing".
I have dealt with people who are experienced with depression who cannot understand that the ability to lie on the couch and knit does not equate to the physical ability to get up and clean house. Because their problem is getting motivated to get off the couch, they automatically assume that I'm knitting because I don't have the motivation to get up. At some point, you realize that it's a waste of effort to explain that you KNOW the house needs cleaning, you WANT to do the cleaning, but your autonomic system dysfunction causes you to pass out whenever you stand up, and therefore, you can only do those things that can be done lying down. They are seeing your problem through the lens of what they're used to seeing in themselves, and can't get their minds around it that you have an entirely different reason for lying on the couch all day, which has nothing to do with needing a kick in the butt to get going.
Richard Cohen took a group of patients with different health conditions to talk to medical school students. The theory is that meeting these patients in a situation where the doctor knows they're not asking for drugs will help them to understand what life is really like for the chronically ill. If someone tells you they're in extreme pain all the time in a situation where you can prescribe pills, you may think they're just looking for party pills and doubt their reports; but if someone tells you that when they know that they're not going to get a prescription, you'll listen differently because you know you're not being manipulated to feed an addiction.
I think this is something that CFS/fibro support groups need to do, if at all possible. Take patients to talk to doctors and medical school students in a LEARNING situation, where the doctors will not be suspicious that they're being worked for pills, because they know you have no expectation of getting a prescription. Plus, they won't be within the 7-minute time constraint of a typical appointment, and will have more time to ask questions. Tell them that a day when you have pain level 6 is actually a GOOD day, because you're usually at 8 or 10; maybe when they're treating patients later in their career, they'll remember hearing that excruciatingpain is not uncommon and be more sympathetic to the reports of pain, as opposed to some of my doctors who couldn't grasp that I was not just referring to a dull achiness, I was not exaggerating a 2 to a 10 because I wanted pills to party with. All I wanted was enough pain relief to be able to sleep, but no one had ever educated them that CFS/fibro pain is not the same as when "depression hurts" and therefore cannot be fixed with an anti-depressant.
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