The Things People Say

Best to admit it straight away. This post is written in anger and as a reaction to one of those infamous, unthinking comments the chronically ill receive on a regular basis. I normally hover half an inch or so above unthinking comments. Some, perhaps most, of them are not meant to hurt or cause offence. People utter them because they want to express concern. I would like to think of myself as someone who has bigger fish to fry than grow upset about every well-meaning person who makes a clumsy comment.

On the odd occasion even the most well meaning comment can hit hard and hurts more than usual. I have just spent a sleepless night because of a question I received last night from a relative who I had not been in touch with for over three decades and with whom I have reconnected over many emails in the past few months. She herself was shockingly ill sixteen years ago and her recovery from cancer was not a success story in that she has become chronically ill herself and requires immune therapy on a regular basis. She is no stranger to pain and long-term suffering. The first few weeks of reconnecting with her were like a breath of fresh air. She was the first relative to ever ask me intelligent, well-informed, sensitive questions. Soon, we started to tell each other anecdotes and I happily gave her my unreserved support because she, too, had been at the receiving end of much abuse from some members of the medical profession (which seems inevitable for some sad reason). At her request, I provided her with many informative links to research studies on ME and we did discuss the political nature of chronic illness, underfunding and lack of care for those too ill to actively participate in society, i.e. by way of visibly, physically appearing because they are too ill to leave their homes.

For some weeks we did not communicate as we both had to take a break owing to ill health. Yesterday she wrote to me to tell me some good family news. Then, out of the blue, came the question ‘Claudia, why are you so withdrawn? What is wrong with you?’. I stared and stared at my screen, not fathoming what I was reading. After a moment, I looked again, surely there must be a mistake? There wasn’t. I forced myself to read on and it turned out that she felt I had given up on myself. I had not tried hard enough. She wanted to encourage me to seek alternative therapies; surely there must be something that could help me out of my ‘shitty’ situation.

As I said initially, most of these comments are uttered because people want to show something akin to empathy, solidarity, or they simply want to express that they care. But this time, in spite of my having bigger fish to fry, I cannot simply move on and forget about these comments. They reverberate for a number of reasons, which include:

  1. It is insulting to suggest to chronically ill sufferers they have not done everything in their power to get better.
  2. It is insulting to assume people put themselves through the education system at considerable cost and effort, to then not want to make use of their degrees.
  3. It is insulting to assume people prefer being stuck in instead of living life to the full.
  4. It is insulting to suggest there are alternative therapies available that sufferers are not ‘open-minded’ about when all they do is protect themselves from quackery and unscientific, unsafe methods of ‘treatment’ (almost every long-term ill person will have half a dozen stories to tell of money squandered in desperation on snake oil cures that, surprise surprise, did not have any effect).
  5. It is insulting to suggest someone with a neurological illness themselves find a cure for a complex condition that the best researchers in the world have not managed to discover.
  6. It is insulting to scapegoat sufferers for the disgraceful underfunding of research in a specific field.
  7. It is insulting not to believe in what I say when what I have said is based on science, knowledge and many years of effort and experience. I have neither the time or energy to waste informing those who seem to want to learn initially but then revert to square one.
  8. It is insulting to express an uninformed opinion when not contributed towards biomedical research or in any other way helping towards genuine change for the better.
  9. Victim-blaming, no matter how much it is expressed as concern for the ill, is never acceptable.

I could go on but I will stop there. As I said, this is a post written in anger. Anger is important and can be productive from time to time. It can serve as a catalyst for change. Maybe someone will read this blog post who has not heard it all before (I am hardly the first to express anger or the first to write a list of things not to say to a chronically ill person, Toni Bernhard and many others have done so, brilliantly). But there is always someone out there who has not had a revelatory moment, who is blissfully unaware of the hurt their seemingly innocuous and well-intended comments can cause. Until we are blessed with genuinely effective treatment and recognition by the establishment (that includes no longer being smeared and maligned by so-called health and other journalists) there is very little hope of experiencing a modicum of dignity. Hardly a day goes by without a new slight having to be processed and countered. This is no way to live and the last thing we need is an otherwise lovely, long-lost relative asking us why we have given up on ourselves.

Thank you for reading. Look after yourselves and make use of that anger occassionally.

14 thoughts on “The Things People Say

  1. susanatkins1955

    Unfortunately I am only too aware of an identical scenario being enacted all across the UK. It doesn’t matter from whence it came, after many years of crass ignorance, blind stupidity and downright indifference, it is incomprehensible in my mind that medical professionals are still not able to bring themselves to agree with what most individuals have known for many years, (including the WHO Classification) that ME/CFS and Fibromyalgia are neurological illnesses which have the capacity to deteriorate over many years. That wasn’t so painful, was it?

    The whole scenario should be owned up to and dealt with so that never again will some well-meaning family, friend or individual faced with ME/CFS or Fibromyalgia be remotely tempted to ask such absurd and simply shameful questions.

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  2. SCIENCE ME (@moms4science)

    Claudia, I know exactly how you feel and anger is justified, — it was a very stupid remark. The thing is, I don’t think anyone who is not diagnosed with ME or CFS can really not understand the incredible amount of shit thrown at us every single day. What helps me most on days like this is the contact to fellow pt, they get it, and some humor.

    So, hugs from me and some humor by Hans-Michael Sobetzko via twitter.

    Anushka

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    1. Utting Wolff Post author

      Thanks, Anushka. That’s a good perspective; ppl may understand being ill (on the rare occasion) but definitely not the context and its implications where ME is concerned. An interesting distinction. Thanks for the cartoons, very sweet of you. Oh, and I share my life with the sweetest, cleverest, kindest man on Earth. He’s had ME for 30 years, so there’s really no limit to the understanding I receive and vice versa. Being two cripples (we may say this) has its disadvantages in daily life but mostly we rock and we know how very lucky we are. All the best and thanks for your kind support.

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  3. Jane Colby

    It’s my firm view that when people comment on someone else’s situation they reveal more about them selves and their own limitations. I recently commented about something on Twitter and it bears repeating here: “They have no conception of what it’s like even with the best will in the world.” This is one of the valuable precepts that lies behind the way I run Tymes Trust. We don’t have anyone on our Advice Line Team who doesn’t have personal experience of ME, either as a person with ME themselves or as a carer. So when someone speaks to us they know that they’re talking to a person who does get it. It makes such a difference as they know they can trust us to appreciate what their child is going through. We’ve been there, done that, got the T shirt! Sorry you’ve had this upsetting experience.

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    1. Utting Wolff Post author

      You are right, Jane. It is always about them and I very much appreciate your input because it’s an important reminder. As regards Tymes Trust, I will soon be in touch regarding the book project. All my best, Claudia

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  4. Mary Schweitzer

    I’m so sorry that happened to you. To me it read more sad – sadness that the obvious remains invisible. It wont be invisible forever. I am convinced that more major universities will join Stanford, Columbia (in the US) and Griffith (in Australia) in pushing these disease into the light. I’d like to say “And then they’ll be sorry” – but I know they won’t. But maybe they’ll stop saying stupid things.

    You somehow managed to compress your anger into a very well-expressed post. If your relatives don’t read it, maybe somebody else’s will.

    I liked this sentence: “It is insulting to suggest someone with a neurological illness themselves find a cure for a complex condition that the best researchers in the world have not managed to discover” in the context of a “disgraceful underfunding of research.”

    There is a simple answer, if you feel like it. “I thought you, of all people, understood.” period.

    But – you have us! We’re still here! We may not be in person, but we’re real! And we’re all very thankful for you. {{{{{{{hugs}}}}}}}

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  5. tipsforme

    Something I wondered reading this is whether in the gap of not being in contact for a few weeks she’d been influenced by other family stories? Narratives shared between family members can be powerful even if not founded on any facts. Closer family members feel sure they understand both your illness and personality but often misattribute things both ways. I find it hard to challenge family narratives for fear of hurting others even though some of the stories hurt me and are regurgitated for years…

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    1. Utting Wolff Post author

      Yes, most likely. As you can imagine, being out of touch for over thirty years in itself is a sign that not all was well anyway and there is a lot of dark family history that’s never been dealt with ( we were only tiny children then and I have no need now to dwell on a dysfunctional family’s past). Whatever it was that caused the crass change in attitude, I’ve decided today I don’t want anything to do with her anymore. This time, I’m not interested in dialogue, some things are best left in the past. Thank you very much for your thoughts and much appreciated input.

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  6. K

    Dear Claudia,

    Oof. What a suckerpunch to the gut. I’m so sorry. To have opened up to someone, seemingly bonded over shared experiences, empathised…and then that.

    Any chance this could have a lot more to do with her frustrations with her own situation than anything to do with yours? I have spotted good old-fashioned projection in similar comments I’ve received in the past, along the lines of “My problems can’t be solved, but yours look easy.” Or “My problems had solutions, yours must too.”

    Hopefully, if the relationship is worth saving as a valuable one for both of you, you can get over this by talking it through. She’s only a few months in to learning about ME. It has taken some of the best people in my life years and years to “get” certain aspects of it, and they can still surprise me with bits they don’t get. In between expletives-in-my-head, I try to remember that it took me many years to get certain aspects of it too, and I was experiencing it first hand. The comments still hurt, though. They still clarify that I’m even less understood than I thought.

    If the person’s worth it, I try to see what’s behind the comments/victim-blaming that isn’t offensive. Like, “They’re extremely frustrated that I’m stuck in this shitty situation and wish there was some way I could get out of it”. That bit I can get on board with. Right there with them. I still find it hard to understand that despite everything I’ve tried over the years, nothing has helped. Stepping away from that angst-ridden search, or not engaging in it in the first place, is courageous, wise and health-promoting, it is not giving up. And it doesn’t mean we won’t be tripping over each other to get in line for a future treatment with scientifically demonstrated efficacy. (C’mon, Fluge and Melle…)

    I hope you can work it out. There aren’t many people who are open to reading and listening as much as she has.

    Thank you for sharing this so that it might help others,

    Hope the payback for that sleepless night isn’t too bad,

    K

    Liked by 1 person

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    1. Utting Wolff Post author

      Thank you so much for sharing your thoughts based on your own experiences in similar situations. It’s horrendous we’ve got so much in common (in such a case I wish ppl didn’t have anything in common as I’d very much like to find examples of good relatives and friends who’re extremely thin on the ground.) As I’ve written in reply to another comment on here, I’ve decided not to seek further dialogue. I did send a polite and, given the circumstances, rather patient reply to my relative and I’ll leave it there. Some people are simply beyond me. Time for me to learn to leave well alone. The payback is getting worse and it’s just not worth the pain and trouble. Thanks again for your comment.

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