The illusion you will be able bodied forever and the limits of empathy

I have to remind myself again of the pitfalls of trying to communicate complex ideas within 140 character tweets. The other day I failed again.

tweet about being able-bodied

I hereby recommit to the rule that if communication is going badly in tweets, maybe retreat to writing a blog post. So here the blog post goes, because I think the idea I was trying to convey is important…

Learning from one of my psychotherapy patients.

When I was at the University of Michigan School of Medicine, I was seeing patients sometimes in a Family Medicine clinic at the mall and sometimes in the specialty mood disorders program of the Department of Psychiatry. I was mostly doing research, and looked forward to my 6 to 10 patients a week. Having so few to see, I could sometimes pick up a conversation from the last session quite close to where we had left off, in a way that amazed patients.

I didn’t require that my patients teach me anything, that would be a burden, but often it just happened. Particularly if I suspended the idea that I knew what was going on with them and more carefully listened to them. “Sorry, I don’t understand” can lead to some productive conversations.

Even though it’s been more than 25 years I remember well what a patient with diabetes taught me about the illusion of being able-bodied forever. Let’s call him George.

He was referred from a special diabetes clinic with a note that his anger was interfering with the management of his diabetes. Before I even saw George, I started with the assumption that he must’ve angered one of the professionals at the clinic. I was supposed to fix them so he wouldn’t be such a problem.

The first session he expressed strong dissatisfaction me, insisting that I would never understand his anger. I told George I didn’t have any basis for arguing with him. I added that maybe he was being punished with a referral to me, because I had a reputation for being abrupt, illogical, and confrontive with patients.

do you know what really sucks diabetesDiabetes sucks

George told a horrible story of horrible experiences with a horrible disease. He once raced speedboats and fast cars. But now he was blind. Not only that, he had suffered repeated infections in his eyes that required they be removed. As he told the story, adding to his problems was the day he was supposed to get his eyes removed to be fitted with his glass replacements, a nurse had shaved his hairy buttocks so they were smooth as a baby’s. The surgeon didn’t know that, and took a graft from there, with the result that he had irritating hairy eye sockets behind his glass eyes that required shaving. To amuse himself, he sometimes took to popping out his replacement eyes when he encountered a new health professional, telling them he was keeping an eye out for them. They were not amused.

Then there was his tale of his experience with a prosthetic device that was supposed to it sucksallow him to pump up an erection and have sex. The pump broke after using it only a few times and became infected.

I told him that having diabetes must really suck. He said I couldn’t possibly know and started getting angry with me. He said that my problem was that I was perfectly healthy and had the illusion that I would be able bodied forever. I could only begin understanding his problem if I gave up that illusion and that would be very difficult, given how healthy I was. I understand, I mistakenly said, and he said no you don’t. I said “okay, I don’t understand.”

George said that when he raced boats and cars, he also worked out regularly and kept himself in the best possible physical condition. He had little sympathy for anybody who did not. He felt most of life’s problems could be solved by charging into them head on without whining. He hated whiners.

Stephen HawkinsBut now it was all different. And now he had acquired the wisdom to admit that sometimes experienced his disdain for “weak, sick people” because he was frightened by any suggestion he could ever become that.

I told him there was not much I could do for him, except maybe get angry at his diabetes with him and help him redirect his anger away from his wife and other people. We started pursuing what would be an ongoing conversation: “given there isn’t much we can do about your diabetes, is there something we can do about your anger that would make it easier to deal with your diabetes?”

George’s diabetes got worse, but his relationship with his wife got better.

We almost always started sessions with the reminder exchange, “diabetes sucks.”… “Ya, really sucks.” Sometimes we simply say “Fuck diabetes, fucking diabetes.

Sometimes, we really got worked up, and other times, increasingly as we spend time together, he admitted he was damn scared about his deterioration. He occasionally cried. I sometimes left the sessions quite demoralized, rationalizing that I was doing good to take it away from him, or at least not leaving him alone in his demoralization.

fuckcancer-1-page-0-1I really believe that patients are entitled to any emotion they find useful in coping with difficult and often intractable health problems. I certainly don’t buy into the idea that positive attitudes can somehow mysteriously directly influence physical health outcomes. Illnesses are not the context but teaching people to be positive or to find benefit in their predicament.

Rather, you have to look at the effects of attitudes on behaviors, health-related behaviors, but also behaviors going on between patients and their carers. And sometimes giving up unrealistic expectations can make it easier to deal with things getting worse. Sure, the situation is hopeless, but not serious, and better able to deal with if you suspend hope and just try to cope with things as they come along.

It’s been a long time since I saw George. Not long after I stopped seeing him, I learned he had died.

I’m still quite healthy, luckily, but approaching 70, I have intimations of mortality and have fewer illusions about being able-bodied forever.

So, the lesson for patients with chronic fatigue syndrome/myalgic encephalomyelitis?

There is probably some point in your life where you were quite healthy and never anticipated being struck down by the illness. You had the illusion of being fully able-bodied forever. You probably lacked empathy with people who complained of impairment from illnesses you couldn’t see. You may even have thought that their reports were illegitimate and self-serving. They were faking it to get sympathy or to get out of doing things, maybe. Beyond that, you might’ve been threatened by the confrontation sick and disabled people provided you with the possibility that you could ever be in their shape. Maybe you could’ve mustered up some dislike and intolerance

You lacked the empathy that goes with the illusion of being fully able-bodied forever. Now that is different.

But you are in constant contact with seemingly able-bodied people who couldn’t possibly understand what it’s like to have your life destroyed by an invisible, poorly understood illness, that some deny even exists and other say is only in your attitude. They may try to be sympathetic, claim they understand, but they really can’t. If you are going to get along with them, you may need to understand they can’t understand and that they will deny that if you confront them. So maybe you just have to suffer them having their illusions and hope that sometimes at least they can get past that and empathize with something they can’t understand. And expect at other times, they will still act quite insensitively and blaming, because they don’t understand.

It’s an added burden to ask you to empathize with them based on your past illusion of being fully able-bodied forever. Your illness is enough already. But the empathic process and understanding not understanding has to start somewhere, if not with them, maybe with you.

knots.jpgBut, seriously,  who am I to try to tell you that?