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?

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31 thoughts on “The illusion you will be able bodied forever and the limits of empathy

  1. “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.”

    It is hard to remember as I was just a child. I don’t think I spent much time thinking about people with illness and disability except when I met someone with a disability (Autism and someone in a wheelchair) – and I did try to listen, though I don’t really remember how much actually soaked in.

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  2. I see what you’re saying, and I’m really really happy to have you on “my” side.

    Sure, I sometimes thought people were exaggerating when they complained about their experiences with illness. I might have even been judgemental or insensitive, and I definitely thought I was untouchable and would live forever. Except I was a child. And I wasn’t working as a health care professional.

    As you can understand, I got sick at a young age. I am now 27 years old, and got my diagnosis in 3 years ago after a long struggle and misdiagnosis, as most people with ME. I don’t know, I just feel like we should be allowed to expect more from doctors. At least I wanted to be able to expect that they had learned the lesson from the hcp before them; that they don’t know everything yet.

    MS patients faced the same stigma not that long ago, until they figured out that “hey, we CAN see something wrong with you guys!” And now here they are. “If we can’t see it in a standardised test, it is not real.” I mean, come the F on! Really? Again?

    And then they say “Everyone feels better with exercise”, which, I have learned, is not true either. We’re actually not that unique.
    A friend of mine with a heart condition was in about the same state as I, just before she got her transplant. They hadn’t believed her either, 2 years earlier, when she complained of feeling ill. Even though they KNEW she had a heart condition, they brushed her off.

    So, my conclusion is, it’s nothing wrong with the way us patients see things. It’s the doctors. 😉

    All the best,
    Jonna

    Liked by 5 people

  3. I don’t know quote how to explain this. Terrible, enlightening story about George. But … while there was a period when I assumed I would have a normal life; when my career was exploding and I had plans for increasing productivity when my kids hit college .. I don’t think I ever lacked empathy – I’ve been around sickness. Terrible sickness, too. I just didn’t think I was going to personally lose that particular lottery. I ate right, exercised, did the nautilus circuit. People in my family live into their 90s. Didn’t expect this.

    I think what frustrates me is not the people who cannot really understand what this is like – because it is very hard to explain what it is like (we were just joking on Twitter that it’s hard to explain in 100 words, let alone 140 characters …).

    No, it’s the people who SHOULD understand and don’t. There’s a girl name Karina Hansen who was taken away from her family (and her own physician) and thrown into a mental hospital because she “chose” to be disabled. Purely on the basis of the pet theory of the powerful psychiatrist who inserted himself into the case and did it. Why, she’s not sick – she just has “false illness beliefs” – and whoosh – she’s gone. They wouldn’t let that girl’s family, or doctor, or lawyer, see her. She must think she has been abandoned (it has been three years). The diagnosis has changed, adding “persistent refusal syndrome” because she “refuses” to walk. We think she is now very very ill indeed.

    Why would somebody DO that? I don’t understand it. I mean that. I REALLY don’t understand.

    Why would somebody throw a kid into a pool face-down to prove that he can lift his head though he says he can’t – until he has to be fished out of the pool because he wasn’t kidding.

    Why would doctors refuse to give a girl who says she can’t swallow a feeding tube because – they say – she’s really just aneroxic. Then put her in a psychiatric hospital where they actually punish her for not eating (which, BTW, is a terrible idea for dealing with anorexics …). She managed to escape from the mental hospital only to die of dehydration.

    Why would you recommend that the patient remove herself (always a woman in their prescriptive narratives) from all “bad” influences – which means her doctor, her relatives and her friends, all of whom have been trying to help her – because they just reinforce her “inappropriate illness beliefs.”

    Why is it acceptable in this day and age to set up an all-knowing professional who denies everything the patient knows about his/her own body and own disease, while lying to the patient and saying, “oh, I underSTAND.” (See the KCL recommendations to physicians for dealing with this disease – google “KCL CFS professionals”.)

    I could go on. I was a professor in a very different field. We always had workshops and seminars on our research – and people could take no prisoners in those workshops and seminars, but the idea was to make the research BETTER. If you think ME patients are hard to deal with, try butting heads with a Chicago economist. I think the NEJM did a bad thing to medical scholarship with that rule about shhhhhhhh. silence ….. before it’s published. Well THAT’s a little late to correct a serious flaw.

    As a researcher, I watch all this and feel like they are killing the goose that laid the golden egg by pre-choosing what is going to be accepted and what is not. Because research is dialogue, and a dialogue that must be ongoing, that must live. Life means constant motion. Ideas have to be in constant motion. Which means they bump into each other from time to time. Okay. What’s the harm in that?

    And as a patient, friends with many other patients, i watch it in horror. A slow-moving 30-year horror show.

    I can understand why strangers can’t figure this out. It’s complicated. I have immune defects, active viruses in my spinal fluid, abnormal SPECT scans, abnormal CPET scores, abnormal Holtar monitor tests (I’m writing this because I am on an experimental immune modulator/antiviral that makes the tests return to a semblance of normal and the viruses go dormant). This is complicated.

    But … I can’t understand why professionals censor the research that is out there on biomedical explanations for our symptoms. I can’t understand why their careers matter so much that they are willing to inflict that much damage on other people – and the name of the game is staying just one jump ahead of exposure, by any means possible. Because by now they must know that their research did not show what they claimed it did; that the whole house of cards on which the “biopsychosocial school of medicine” is based is going to come down – tomorrow, next year, five years – I don’t know when, but it’s inevitable. The preponderance of biological evidence is building.

    I’ve lost a lot of friends in the past two years. In some cases their bodies gave out. Their hearts gave out twenty, thirty years earlier than they were supposed to. In one case a man in his mid-60s died of pneumonia because of his weakened state. My Dad died last year of the same thing, but he was 93. And there are suicides.

    I have friends who are terrified of becoming homeless – just one of my medications costs more cash than most of my friends have for a year’s income. I know parents who worry about who is going to care for their child when they die. (One suicide came after a patient’s mother died and he overheard his siblings discussing how they’d share the burden of caring for him.) Some of our conversations are about “hang in there” and “we understand” and “here’s a surprise bouquet of flowers for you” – a lot of our conversations are simply about where to find a good doctor, because there are so few. It isn’t taught in medical schools.

    I have a lot of friends who got sick in high school and are still sick thirty years later. They never went to college. They never met the love of their life. They never got married. They never had a career. They never had children. What do you think that would be like? And then it’s all over the media that this is just a silly disease of silly people. There are doctors who laugh at you behind your back. There are people in power who simply say, “Oh, I don’t believe that’s true.”

    We try to make a joke out of some of it. Latest brainfog incident. Tried to stuff a roll of paper towels into the Mr. Coffee machine. Or offer advice. Save up spoons before that special event; stay horizontal. Don’t feel bad you can’t go to the wedding, or visit with your friends from high school who are holding a get-together for someone who’s flown in, or fly to see your mother one last time. How do I explain this separate universe to you people?

    You normals, you don’t know about this world. [My fondest gratitude to those who are trying.] But there are psychiatrists who do, and only make our lives harder. And I think they know that, depending – there are some I am quite sure know that. I don’t know, some may just be that stupid. But the others, they must know. Because unlike you normals – they have seen us. They have been around us. They have looked at the young girl who cannot stand up and chosen to pronounce her neurasthenic. There’s one in particular for whom I am quite sure this is all just a game. Well, it’s not a game for me.

    Remember what it felt like before I was sick? That was at least 21 years ago (depending on when the onset was – 21 years since the collapse that turned me into the creature from outer space.) I’d rather not, actually. Saner to exist in the here and now.

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    • Thus is just so moving and so horrific, I hardly know what to say, being sympathetic seems barely adequate, but I really am. I have a close friend with ME and she is brave beyond words. She like you, is doing her utmosty to bring the truth about this horrendous condition to a wider public understanding and I have to believe that this will eventually have some effect. Best wishes.

      Liked by 1 person

    • Agreed. There is a difference between a person who has no scientific or medical knowledge needing patience from us to learn about our poorly understood illness and a person who would wilfully neglect and abuse patients because they’ve already made a career out of it before they realized they were wrong.

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  4. This blogpost striked a chord within for different reasons than the fellow with diabetes you are describing. I am totally mad and pissed off at my government for not investing in research for 30 long years. Like Schweitz I have known friends who have taken their lives from this disease. The community faces constant grief from folks going through different battles with the health care system, disability insurance or their health insurance companies. Every single day.

    I am absolutely furious at the several doctors who not only dismissed my illness and symptoms, but alleged I was depressed and malingering when I expressed my extreme discomfort when sitting or standing, early on. i am very angry at the consultation reports which are saying that I should not get further testing because I have this illness.

    The social stigma for this disease is unbelievably high, in and out of health care.

    This said, my brain is on fire. Living with this illness makes it so. Talking worsens my cognitive issues. Being angry doesn’t make things any better and it can get hard to manage. Then the concept of ‘post-traumatic stress disorder’ comes to mind. There is so much trauma in this community, on so many aspects. Losses as your patient George felt is continuous and unresolved.

    Thank you for writing this.

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  5. I imagine feelings of anger are very common in those facing long-term disabling health conditions. Anger at losing your old life and having a present & unknown future you hadn’t bargained for & yes, maybe some people get angry at the whole world. In the end, as you say, there comes a time when you learn to adapt to ‘what is’ & try to make some kind of life to hang on to. It took me some time to understand that some people, even well meaning close friends and family, will never understand what my life is like until they’ve walked the same road as me.

    There is another layer of anger however when the narrative is ‘you could get better if you wanted to’. After all the newspaper headlines say ‘Exercise and talking therapy cures Yuppie Flu’. Researchers perpetuate the myth that helpful medical treatment is out there.
    It feels to me that there is a ‘deformation of character’ thrown at people with M.E. for failing to make a full recovery or at least improve enough to have a reasonable quality of life. The deformation can range from the Government’s agenda of ‘scrounger & malingerer’ to psychiatrists suggesting ‘taking on the sick role for secondary gain?’ or friends thinking maybe you’re depressed (and should get appropriate medical help) or for some reason have chosen a weird lifestyle choice of being a recluse. “Oh I haven’t seen her for years. She’s cut herself off you know’. Much sad nodding of heads….
    Was anyone angry with George for not regaining his sight and continuing to be blind?
    Did others berate him for not managing to live the kind of life he used to?
    To get angry with having an incurable illness is understandable, but to have to endure the limitations such an illness causes whilst others berate you, get angry with you and finally give up on you and desert you… that is very hard. And to see that money is still being put into research that is based on M.E. being perpetuated by some kind of fantasy sickness narrative the patient is pathetically clinging on to (poor deluded things)….. well, that is very angry making!

    Liked by 3 people

    • You said so well what I haven’t been able to articulate. Another layer of anger at being accused of not trying hard enough to be better. Add to that that now I’ve made it worse by being angry as the narrative goes so it’s even more my own fault.

      Just a note I don’t know if you meant to say defamation. I only mention it because I love your concept of defamation of character. It’s that defamation of character that I live with an experience every day which leaves me without adequate social support to improve my circumstances now that I have lost the only career I knew and since I was not able to develop a social life. And it’s that defamation of character which leads me to want to end my life.

      Liked by 1 person

  6. As a healthy person who’s close to an ME sufferer, I agree with this … to a point.

    Yes, it’s hard to believe that you can ever become sick or disabled when you’ve never experienced it. Even having seen severe illness up close and understanding intellectually that this could happen to me, I don’t believe it on a gut level. That kind of pain is beyond the scope of my imagination.

    I also understand why people want to cling to the just-world hypothesis. It feels awful to accept that bad things happen to good people, worse to accept that good people can’t make certain kinds of badness go away through the sheer force of their goodness.

    But.

    I have little sympathy for those who refuse to believe the facts in the face of overwhelming evidence. How can you watch a friend or a sibling or a spouse become sick and believe they’re capable of positive-thinking their way to health? How can you listen to your loved one explain that it’s not that simple and fail to believe them? How do you not realize that if sick people could think themselves better, they’d just do that.

    My suspicion is that most sick people don’t immediately estrange themselves from the friends and family who fail to get it. They probably do attempt to explain what it looks like from the other side. But that’s all they can do. In the end, it’s the responsibility of healthy people to confront their own misopathy.

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  7. Thank you sweitz75 and cherryonasunday. You both have articulated what I can’t . I also became ill 30 years ago. I’ve had friends die or suicide. I live in fear of what happens when my elderly parents die. I can not believe that 30 years on I’m still
    Unsure who to divulge my diagnosis to. It would be far easier to have AIDS. We are afforded so little respect in the health system that I try not to go to Drs. The sickest of the dick can’t get to Drs so what happens when they are ill with something else ? This is reality. If we are angry , hells teeth we have every right to be. We aren’t the ones with false illness beliefs, it’s about 6 psychiatrists world wide that have false beliefs. You tell ‘ em James, because they ain’t ever gonna listen – not even to those doctors who have bothered to listen and have learned and have helped.
    Thanks James –

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  8. Thanks for a very good post. Some very good comments above too.

    I think one of the problems is that it takes a lot of imagination to understand what it must be like to walk in *anyone else’s* shoes and it is so much harder when you are well and the other person is sick. Even if you *want* to do it, it is difficult – and with sickness most people just don’t even want to go there. And no, of course, the misleading publicity which keeps appearing in the media (especially following whatever is the latest PACE rehash) doesn’t help. It gives people an excuse not to empathise – and most fit people grab it with both hands.

    Two professions – journalists and doctors – should make a difference by leading the way to understanding, but most of the time they lead in the wrong direction. Journalists should be able to empathise as part of their job but that doesn’t seem to apply to science writers unfortunately! As for doctors, at one stage here in the UK they were taught that they were an elite breed, a cut above mere patients. Hopefully that has changed a bit but I’m not sure by how much. It would make so much difference if they could be taught in medical school that illness can happen to anyone, that we are all fellow humans, and we should not look down on people just because they are sick, even if they are sick with a mental health issue or a condition which is poorly understood such as ME. It sounds so obvious to say it, but the obvious is so often overlooked.

    Declaration of interest: I have been ill with ME for 32 years.

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  9. James, I am a big fan and very grateful for all you have done for the ME/CFS community. I am afraid on this occasion I must disagree with you.

    I grew up in a household where one parent became very severely disabled. That was sometimes frustrating and hard to understand as a kid. However, my parent was NEVER told that being ill was a character flaw or weakness. Instead they were included in as much as they could do and we supported them as best we could.

    Before I developed ME/CFS, I confess I didn’t believe it existed. I only knew what the newspapers had chosen to write. However, because I had experience in life with a devastating, chronic and incurable illness, I understood that when someone told me they had ME they had something wrong with them. Was I as supportive as I could have been? I don’t know.

    The problem is that some diseases are “legitimate” and others are not. If you say you have ME you are instantly dismissed as having a deeply flawed character/being weak, attention seeking. Today an MS patient is understood to be suffering from a horrible disease. Although they were once treated as we are.

    That understanding of whether or not you have a “legitimate” disease is the bridge that is needed before the ME/CFS patient will be heard at all. By doctors or fellow humans. It seems this bridge cannot be built from the ME/CFS community side alone. We have been trying for many decades now.

    Thanks for all your work.

    Liked by 4 people

  10. Excellent post. I often think that if I didn’t have this disease and just relied on the UK media for my perception of it, I’d assume it was psychogenic – unless I’d had the opportunity to see a severe form of it in someone I knew well, and particularly if I’d seen it develop following acute viral onset (a common form of onset in ME).

    We’re the ones with the horrible, devastating problem here and that means that we’re the ones with most to gain by taking up the “burden” of empathy with, and understanding of, the people who don’t “get it”. Activism involves understanding what the other side thinks and tackling it – and the most effective activism involves bringing the public onside, not attacking them. Empathy and understanding are necessary for that.

    It’s not fair, of course: but as we all know, it’s not fair that we got sick.

    Liked by 4 people

  11. While no one in their right mind would want to swap places with George, there was one particularly exquisite form of torture he didn’t, presumably, have to endure: people telling him that he wasn’t really ill and if he would just change his attitude he’d get better.

    When you know you are ill just as surely as you know you exist, being told that you’re not in a thousand different ways — from casual remarks to the pontifications of psychosocial theorists — undermines you and diminishes you to the point where you feel like you’re being gradually erased, where you begin to question your sanity.

    And yes, that’s probably very hard for a healthy person to empathise with, but not impossible. You know those experiences with bureaucracy — the ones where the infuriatingly calm voice on the phone repeatedly informs you that they’ve checked the system and you do not, in fact, exist? We get that every day. We live that phone call. Like some wretched charater in a Greek myth we’re condemned to a life of being calmly, politely informed that we do not exist.

    And that definitely, seriously sucks.

    Thanks, James.

    p.s. are you using dictation software? “glass eyes” came out as “class size”!

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  12. Reblogged this on byronsheroes and commented:
    because I’m so tired of friends that are “well when you are BETTER”… and it’s not going to get better. Or even your friends that do have a chronic illness but they handle it differently… their pain and their coping is not your pain or coping skills.

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  13. THANK YOU! Having RA and also Giant Cell arthritis, throw in some Hashimoto.. and life is a roller coaster. Oh and my liver is very very unhappy with me. I’m kind of yellow at times as it really hates my medications. I have friends that THINK they are supportive until you pull out your CASE of medication and they are “wow, HOW MANY PILLS DO YOU TAKE?” It just pops out of their mouth, and I HAVE to be the calming person “well I mean, this is what keeps me alive, keeps me walking, keeps me in less pain.” But it’s always ME, having to be the nice one, the calming one, and you can see in their eyes….they still don’t believe you need ALL those medications.

    If one more friend far away says “Well when you are BETTER you can come visit again!”

    And you get hit with “Oh you have diabetes now from your medications!” from your doctor… you want to say “Look, the hardest part for me was accepting I WASN’T GOING TO GET BETTER.”

    I used to walk around Paris ALL DAY. I have a husband that flies to Paris for WORK, and I used to tag along. Let that sink in, PARIS FOR FREE. Multiple times a year. I’m not rich, but I would take my camera and enjoy the days, thinking those days would never end. My husband would come in from work and we’d walk even MORE. I made silly videos, I published a book with just DOORS OF PARIS, and one with Paris and the numbers 1-101. I was getting a reputation for my work, and it was FREE. And it was never ever going to end.

    Or at least not when I hit age 40.

    It’s the day you realize you have to stop waiting to get better, and learn what this life with illness is going to be like. You go for a small walk with your dog in the neighborhood, in pain the entire time, and you are proud of yourself. You pull out the camera again, and start taking photographs of where you live, not where you would visit and wanted to live. You figure out your best buddies that you would fly to visit, and go drinking and laughing with, maybe will never be your best buddies again. Because you scare them. They look at someone their own age, with pain in their eyes and weight from medication and not moving and ALL THOSE PILL BOTTLES….and they get scared.

    And they sometimes say something like “I couldn’t live like you do, if I lost my life, I would just kill myself. I don’t know how you do it.” But you don’t mention your support group, of people with chronic pain, and how they do sometimes kill themselves, and each death hits you hard, because you’ve thought about it yourself. How sometimes choosing not to end it all, means you are stronger than you ever were before.

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  14. Thank you James for this interesting piece. I understand what you are trying to say and I believe it can be good advice for helping the individual cope within their personal everyday relationships. I do wonder how you see it as helpful in furthering a cause that you yourself framed a struggle for recognition of basic civil rights however.

    I am now 32. I got ill at 7 years old. In intervening 25 years I have spent years in a wheelchair, time in hospital, many years completely bed bound and utterly disabled, so ill I wished for any release. During this time I have lost family members who have just not understood, were embarrassed, even ashamed of their connection with someone with so seriously affected by, as they see it, a figment of my imagination, “yuppie flu”. I’ve lost friends who couldn’t understand how at times I could accept visitors or phone calls and other times I could not. Now I write to you almost completely isolated except for one wonderful family member. I have learned there is nothing for it, no balm for my soul in the face of that loss and humiliation but to accept that people cannot understand what they haven’t experienced. That acceptance is the only way to have peace and maintain some relationships. I have learned to look to people for nothing in relation to my illness, not a flicker of empathy or sympathy nor practical help when it is needed. I have learned to reply to every “how are you?” with “ok” no matter how bad things are. When I cannot sit, cannot eat, faint several times a day even lying flat I am “ok”.
    I know there are many other ME patients like me.
    I wonder if you believe that’s a healthy situation?
    Against a backdrop of the current attitude towards ME patients that is what most of us are forced to do to maintain the tenuous strings of our personal relationships. You can be sure that the people you encounter on twitter and facebook are not so vocal in their personal lives or interactions with medical professionals. They are online fighting a cause, a battle probably very uneasily tolerated in their own homes and personal lives. I think perhaps you have confused the two spheres which I assure you exist very independently.

    I can’t imagine anyone advocating that the gay community just empathise with and accept the prejudice that saw them isolated from family, friends and unequal before the law even if staying quiet meant more polite relations.
    I definitely do not understand how you would hope to gain ground in a battle for basic civil rights for people if your advice is to react with empathy in the face of complete denial. I would be grateful if you would explain?

    I thank you sincerely for your help to us all. I do not interact on twitter of facebook, I am too ill,writing this wiil take a lot out of me, but I read and am heartened by your help and all the other fighters I see there battling for what’s right.

    Liked by 3 people

  15. Can I empathize with the average person that simply doesn’t have the life experience to know what chronic illness is? I would say yes.

    Can I empathize with people who are promoting psychogenic views on ME/CFS? No way. I have my own limits as well. After 30 years, millions of patients are still without basic medical help due to these views. It is unforgivable. There has never been convincing evidence that ME/CFS is psychogenic. This idea is based on flawed logic (mainly the fallacy of psychogenic inference) and bad science.

    It seems that these situations only resolve with some technological or scientific breakthrough.

    Hopefully the Norwegian Rituximab trial will show a clear benefit and be exactly this breakthrough. At least for a portion of patients.

    Liked by 1 person

  16. 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.

    No, I didn’t. Really, this is not a universal experience and I’d guess a person’s upbringing has a big impact on this. Partly in terms of empathy in general and also more specifically in terms of chronic illness and disability, whether they’ve been exposed to seeing it in other people – and how that was dealt with. Putting it in fancier terms, even as a child I always believed someone’s narrative about their own suffering (unless there was very obvious evidence to cast doubt) and as an adult I still struggle to understand the sheer lack of sense and imagination from people who think that just because they don’t experience something directly or personally means that it somehow doesn’t exist.

    Another aspect, and others have mention it here, is the legitimacy of an illness and the demographic of those considered to represent the illness. That is – who gets to be believed, who counts as being credible, because that also plays into what for many people (not all) will determine whether any empathy is available or not.

    Liked by 1 person

  17. I think this is excellent, James, thank you. It’s not just brilliant on how illness and disability are awful, but also on the impossibility of properly understanding for someone unaffected.
    A couple of years before getting ME, I knew someone who was taking some time to get over glandular fever. I confess I thought he was having psychological problems. The irony.
    I do agree with spoonseeker above that one of the major elements of the scandal which has been ME for the last few decades is the failure of the professionals who, instead of increasing understanding of the illness and its appalling effects on patients, have spread doubt, confusion and antipathy.

    Liked by 3 people

  18. Fantastic blog. I remember well that feeling of invincibility I had before I got struck down as a young person with my first disease (diabetes as it happens). I found your description of George’s situation so very moving and I am so grateful that you spent that time with him. You couldn’t fix the complications of his diabetes but you could be there with him while he struggled with his situation and I bet that meant so very much more to him than he could ever tell you.

    Living with lots of diseases including ME and diabetes, I have come to the conclusion that most people (and worst of all doctors) are highly ignorant about the reality of disease and the physical and emotional effects of living with disease. So I try to just hold that in mind when people say something insensitive and hurtful. They don’t know what they don’t know.

    Thanks again for all your blogging and campaigning – it really does make a huge difference.

    PS. it makes me sad that nobody intervened in George’s medical situation before he got to the stage of blindness. I have to hope this happened some time ago before there was regular screening for retinopathy.

    Liked by 2 people

  19. Yes, you need to understand, but you cannot empathise with ignorance. Even if people do not empathise with ME they should be able to accept and see what is happening with people, what they are experiencing. In ME there has been a deliberate choice made to ignore, devalue, cover-over, disappear the disease. There may be people who do not understand, we call that ignorance, but in ME the ignorance appears to be deliberate, which is something quite different. No amount of empathy will change that.

    Liked by 1 person

  20. This gives great insight into the reality of living with various chronic illnesses. Sometimes all patients want to hear is “I’m sorry to hear you have M.E. It sucks”. Instead I have found myself having to place a positive spin on the situation continually in order to retain the support of my few friends and even get help from GP’s. If you tell people the reality of living M.E. they will often unfriend you and not believe you – because many times the severity of the illness is not acknowledged as of yet by the establishment and therefore not communicated accurately to the public. I’ve found if I communicate the true impairment I experience in my daily life to medical professionals this will frequently warrant a referral to a psychologist, as if my “coping skills” are inadequate. Refusal to accept the patient’s experience and just say “sorry we can’t help you much”. That’s all I’ve ever wanted to hear rather than creating the illusion that psychology can help any more than using CBT for the purpose of coping day to day with the implications of living with a life altering disease.

    Liked by 2 people

  21. Thanks so much for this illuminating post that is, as you say, far better than the 140 words attempted on Twitter. This reminds me of the excellent work by Dr. Ann Becker-Schutte who calls this illusion one of “healthy privilege”. As she writes:

    “Healthy privilege allows healthy people to assume that their experience is ‘normal’, and to be unaware that coping strategies that work for them will not work for someone dealing with illness.”

    I identified with her work because, until my cardiac event and subsequent increasingly debilitating heart issues, I too suffered from an insufferable case of healthy privilege myself. More at: http://myheartsisters.org/2013/04/13/healthy-privilege-when-you-just-cant-imagine-being-sick/

    Liked by 2 people

  22. Yes. All of the above, however whilst I can’t feel in body what it feels like not be sick and in pain, I remember being well. I didn’t have the empathy and compassion I have now, but I was an empathic and compassionate person or so I thought. I entered counselling training some years ago and went on a very basic course. One evening we were asked to describe empathy. In a room of 25 people most described sympathy. I had already been sick fifteen years at that point so maybe I would have been one of those 25 in my former body. I do let friends and family off the hook because I understand how difficult it is to empathise with something you don’t feel, less understand. I have a handful of loyal, caring, empathic people around me who understand the odd rant here and there and see it as me letting off steam, not trying to make people feel sorry for me. I’ve built myself some armour, and the mocking and naysayers are deflected, mostly. The ones that get in are the Journalists and Broadcasters, probably because its such a huge audience. I took my wellness for granted, even periods of wellness of wellness I have taken for granted. Thank you, again.

    Liked by 1 person

  23. Some of the commenters seem to be ignoring the fact that while George probably wasn’t told he made his illness and its complications up, he almost certainly was told by some people it was his own fault. People with diabetes are shamed a lot, even those with type 1 diabetes who may have got sick as babies.

    It’s not a contest what is worse, being told you’re not really sick or that you brought it on yourself. Both are terrible, abusive and can really erode your mental health. Of course being told you’re not really sick can also have oncrete consequences, e.g. not getting disability benefits. But being shamed (like fat shaming!) can lead to people e.g. skipping doctor visits and this can have terrible consequences, too.

    I never had the illusion that I would be able-bodied forever. I remember being about eight years old(!) and thinking I might get a chronic illness some day, possibly even as a child. Not with dread, just that it might happen. I didn’t really know anyone with a chronic illness – my mom was bipolar but I didn’t learn that until much later. I had read hundreds of books meant for adults by that time, I think that’s why I understood that being sick is common and can happen to anyone. Of course that concept still didn’t prepare me to getting CFS/ME at 16.

    Liked by 3 people

  24. Great post, James.
    I came to the conclusion that I can’t be angry about someone able bodied not understanding what is going on with me when I paused and thought about myself and how I felt at the time when I seemed to be able to do just about anything I wanted to do. I could feel empathy with someone who had an illness I couldn’t understand. But I couldn’t imagine not being able to do anything against it. Not that I thought that those who are ill are ill because they didn’t want to be healthy, but that for me there would always be a way to solve the problem.
    I always say that I know that it is impossible for you to imagine how my reality looks like and I don’t expect you to do so. But you have to believe me what I am telling you. That is all I ask for. And this is something all of us have every right to ask for. In our society we are overanalyzing every statement to death. It is more common to read between the lines and interpret a statement than actually believing in what a person actually says. It is tragically comical sometimes. I always wonder what the reason behind this cynical approach to not believe what someone is telling you really is (is it the art of politics and the acting of those in the political arena that seems to dominate public perception of how people interact? Is it religion and its struggle to make sense of all the nonsense by interpreting everything? Is it that people think of psychoanalysis and its reasoning as a matter of fact?), but that is all pure speculation.
    Not understandig what we experience is not the problem. The problem is the inhumane attitude that our experiences and our word is worth nothing and the scientific and historic ignorance that directly follows from the reasoning “we don’t understand it right now, therefore it doesn’t exist” (which means everything we don’t already understand doesn’t exist and therefore we already know everything there will ever be known). This is something I can’t tolerate from anyone, but especially from someone whose profession is to help sick people or someone who claims to be a scientist.

    Keep up the great work James!

    Liked by 3 people

  25. I often visit different sites that focus on specific chronic illnesses and I have to say the posts are very similar. There is the common theme of people not understanding, which is a difficult one for me, why would anyone expect them to understand, they are not you, it doesn’t matter if they have the same condition, they are still not you. There is a lot of anger about the situations people are in, its understandable but will inevitably effect the relationships between the person and the people around them, with lots of blaming. This will also effect the way people interpret the actions of others. There was also a sort of hostile passivity. with no real recognition that any relationship involves two people, we can accuse others of being uncaring or hostile without considering why this is happening. Remember Dr’s are human and they go into a profession because they want to help there, but there are a number of conditions that are poorly understood and essentially untreatable that leaves them feeling helpless and useless. They often advise things because there is nothing else, and this also makes them uncomfortable, you might think this shows the don’t care, it doesn’t, its desperation.
    When I read the post I was thinking of empathy as an attempt to understand other peoples position, its not just emotional, its a strategic skill, its a way of taking control of situations. Accept the idea people don’t understand, they can’t, so explain things be straight forward. Accept that illness makes lots of people uncomfortable, talk about other things, find out what’s happening, this makes it easier for them. if you think your Dr is inadequate, be nice, of course he is, and he feels it, reminding him doesn’t help. OK, its an effort, at least at first it is, but if you make it easier for other people you will tend to be less isolated, when people like you they don’t insult you or dismiss what you say, they become more motivated to try and help.
    Its a way of getting more control and getting more support and help. It might feel unfair, but feeling like you do is also unfair. If your very unhappy now with the people around you remember if you don’t try to change something, nothing will change, I thought the article was about trying to make an intolerable situation a little better, that’s all, if you disagree that’s Ok, if you think there’s something in it, its something to try, at least until something better turns up.

    Like

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