Gravity's Rainbow

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Chronic pain workshop totally unprepared for patient with chronic pain

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Tone deaf

The chronic pain workshop was upstairs, but I was sobbing in the washroom, loudly. Despite what you may have gathered from recent reports on my blog, I’m not actually much of a crier. I’m definitely not a public crier. But here I was.

I’ve been sick for a long time. Navigating my illness has been difficult, and I often feel like I’m on my own. I walked into a chronic pain workshop developed at a top university expecting to meet experts, people who studied chronic pain, who knew my illness and what living with it was like inside and out. But they weren’t experts and they were fresh out of a training for this program that I quickly realized wasn’t even designed for my kind of condition and which was kind of offensive to boot. Terribly disappointed, I sat transfixed with distress as the instructors read basic and patronizing advice from their manuals. How could my counsellor have sent me here? I don’t need to talk about adding “Relaxation and Better Breathing” to my “Self-Management Tool Box” – after 23 years of chronic migraine, I’ve got that figured out.

It was hard, too, to sit in a room with people talking about their illnesses and pain, even as superficially as this. Normally I can talk about my own illness dispassionately, but here I found I couldn’t speak at all. If I opened my mouth I wasn’t sure what would come out. A wail of grief, a shriek of rage? Nothing appropriate for a polite circle of cardigan-clad folks under fluorescents on a Sunday afternoon.

At the end of the class we were asked to draw up an action plan for the next week with a small goal we really wanted to accomplish and that we were certain we could accomplish. We had to fill out worksheets with big, childish font and blanks for our answers. I thought of the project management software I use, my daily focus lists, and sighed, but I tried to get into the spirit of the exercise. Sometimes simplifying leads to new insights! I chose a bit of reading I need to do to address one of the comments my advisor made on my proposal.

Right off the bat, there was trouble. Everyone else’s goals were related to the “self-management tool box” – they chose some kind of light exercise or relaxation activity. While their goals got a nod and a smile, the facilitator challenged me, “Do you really want to do that?” I thought this was strange since I’d specifically cited my illness’s effect on my career as the reason I was there during introductions. After I’d assured him that I did indeed want to do the thing I said I wanted to do, he looked meaningfully at the class and reiterated that we won’t be successful unless we choose actions that are personally meaningful to us. While I considered making a snarky comment about how personally meaningfully neck stretches might be another participant, he turned back to me and asked me more details about my goal. We had to rate our confidence on a scale of 0 to 10 and we weren’t passed unless we had confidence of 7. I had confidence of 6. So he asked what I could do to make myself more confident, maybe read less often? I tried to explain that I couldn’t predict how I’d feel, that I could never be “very confident” that I’d be well enough to do anything at all in a given week, and he kept saying I needed to downgrade my goal. I don’t think I got a full sentence in. I eventually nodded, too upset to argue, while he confidently lectured the group on achievable goals.

That’s when I ran. Ashamed, I thought, why didn’t I just write down 7? I knew that’s what they wanted. But 7 represented very confident, and I wasn’t.

How did I end up sobbing in the washroom from that interaction? It wasn’t because I got a failing grade on my action plan worksheet (though I have to admit that stings a little). When the facilitator insisted on realistic goals that I could be totally confident of, I imagined a life of action plans for my worst weeks and it cracked me like an egg. I don’t know when a week so bad I cannot work at all will happen, but happen they do with unfortunately frequency. They are very hard.

If I want to check “very confident” on the worksheet box, I can write down things like “look at the ceiling,” “drink enough water,” “change your ice pack regularly,” “check twitter twenty eight times”, and “meditate three times” because that’s what a bad week looks like and bad weeks aren’t that rare. But those aren’t goals I can write down every week and find my life worth living. And besides, I know how to have a bad week and I’m always prepared with ice packs, food, drugs, etc.

I refuse to plan my life for the bad weeks, but I cannot pretend that they do not exist. I am trying, desperately, to find some kind of life in the balance. I felt confused and angry and very upset to be chastised for acknowledging uncertainty in a chronic pain workshop.

I was also upset because the facilitator reminded me of all the terrible interactions with my neurologists when I was teenager. All those cold rooms by myself with a clearly busy and important man, while I was sick and confused and afraid and trying to explain myself, but constantly dismissed. Here was a proud man bragging about his research background who interrupted and talked over me and dismissed my experiences. It didn’t matter that I’m older now and was smartly dressed, that I’m clever and well educated, that I know an incredible amount about living with chronic illness and especially migraine. I was disappointed that I couldn’t speak firmly and clearly, that my normal calm abandoned me and that all I had was a lump in my throat and an embarrassing waver in my voice when I tried to make myself heard.

I read the book the rest of the workshop is based on yesterday. It does cover the basics of living with chronic pain or illness, but it is very, very basic. It is also offensive and harmful, suggesting that people who are struggling are at fault for being bad “self-managers,” a phrase I quickly came to loathe. The book constantly minimizes the struggles of patients and oversimplifies and over sells solutions. It almost completely ignores the enormous structural issues they must deal with. The few times it mentions structural issues, it does so in a way that puts all responsibility on the patient – it’s all about “managing” your response (Got the blues because private insurance won’t cover your pre-existing condition and you have to move into the nursing home with abuse problems? Go scrub the bathroom with a toothbrush to distract yourself!). It hardly mentions uncertainty, one of the biggest struggles to living with many chronic conditions. It cites discredited or old and incorrect research in several places or is just downright ignorant or tone deaf.

The workshop has 5 more two and a half hour sessions. The only benefit I see from attending future sessions is potentially befriending some of the other patients in the workshop. But I have dear people in my life that I don’t get to spend enough time with already. And there are much better things I could be doing for my migraines and my PhD with 12.5 hours than getting talked down to by an obtuse and self-important facilitator. I do worry if that I don’t go, my counsellor and doctor will think I’m not taking my treatment seriously, that by withdrawing from the workshop they’ll think I’ve “failed” and am a bad “self-manager.” I guess I’ll find out.


All linked quotes are from Living a Healthy Life with Chronic Conditions except the toothbrush quote which is from the Chronic Pain Self-Management Program Workbook.

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29 Comments

  1. I care. Sadly I can do little more than let you know. I read your painful posts because it is what I can do to share and let you know I’m out here in the blogosphere. I struggle to understand your struggles about which you write so powerfully. It’s hard to know how or what to comment, so I haven’t; sorry if this is a bit awkward as a result.

    • Thank you so much for your kind words and for letting me know that you’re out there listening. Also, I really enjoy your blog – it reminds me of lots of wonderful chats with my botany profs as an undergrad and helps keep me up to date with my botanical knowledge 🙂

  2. Blergh, that sounds terrible. I don’t get migraines nearly as often as you do, and it’s still very frustrating. 12.5 hours is a huge investment to be wasted by some bro with his head up his ass, hopefully there will be other guest lecturers? Otherwise I wouldn’t blame you for bringing some sass upon him.

    This tangentially reminds me of an advertisement for a migraine and pain center in PINK CURSIVE FONT (https://twitter.com/marshlight/status/223228435210838016 if links work) that ran near me a while ago. Like, maybe you guys mean well, but NO.

  3. I’m a chronically ill/disabled doctoral student as well, and your group sounds like most of the experiences I’ve had with therapists and whatnot (it sounds like the half day outpatient psych thing I did for two weeks after my pain clinic’s PA sent me mentally over the rails). We need more therapy-type people with a clue about structural issues that impact our lives!

  4. Pingback: Rewriting the book on living with chronic illness | Gravity's Rainbow

  5. I’m out here listening/reading/writing you a handwritten letter. As always, you’ve thoughtfully nailed the issue and showed us the water we swim in (our culture that minimizes struggles and puts everything back on the person struggling, fails at examining anything structural, or even getting to the heart of the matter and instead preferring short-term solutions like distracting yourself).

    Sorry for putting this in the wrong place, but if you could, I’d LOVE to read the NYT blog where you’re extensively quoted. And – I have to say – with writing as well wraught and clear as yours, of COURSE you’d get picked up by major blogs/newspapers. It was only a matter of time.

  6. I’m sorry you’ve had such a bad experience with pain management. I recently had a pain management course in Liverpool (the Walton Clinic PMP) which was amazing and changed my life. Good courses exist – despite them being generic to chronic pain rather than for specific conditions. Just an example of two differences from the one I attended – weekly targets were not to be about things we learnt about on the course because they wanted us to try our best to do those things anyway (at the level that we could). They had to be about something else in our lives – like work or family or socialising. They also deferred to our knowledge. Every session was a discussion and the people contributing most were the pain sufferers, we have the most experience! Of course they were directed by the practitioners, and they imparted us with so many tools and so much knowledge about how chronic pain works but they also facilitated discussion and gave us the opportunity to share our experiences, advice and outlooks. They gave us some individual advice too – like physio exercises for problem areas. The course has been running a very long time, the practitioners are experienced and specialised and it’s generally a well organised programme. I hope you can find a programme elsewhere that helps, or at least my comment helps make readers aware that good programmes do exist. I’m sorry that’s not your experience and I hope you get the support you need!

    Best,

    Alice.

  7. I hate medical personnel for the very reasons you’ve stated – the majority of them are condescending and don’t listen. I have had a handful of decent doctors/medical staff in my life, and plenty that weren’t, regardless of how knowledgeable they actually were. I have Crohn’s disease, and the first gastroenterologist I had made me cry. In fact, he was totally unapologetic about how abrasive he was, and told me at our very first meeting that if I didn’t like him I could go elsewhere. I lasted a year – and I think I only lasted that long because I was desperate to feel better, physically. (Never did.)

    I’m one of those weird people who would much rather go to the dentist than the doctor, despite the amount of work that’s been done to my mouth over the years – I’ve been fortunate enough to have good, personable dentists all my life.

    Anyway, I just wanted to let you know that I sympathize with what happened to you. I hope you can manage to find a chronic pain advisor who is much more caring. Hang in there.

  8. I was turned down for the group and so I have one to one which suits me better. THis is probably because I told them all I did to manage and it shocked them. they were also surprised I knew all the details of CBT. When I explained it was because I had read they were even more surprised.

    I now go into London – which with taxis (as I can’t handle tubes or buses until I get a wheelchair) costs me £60, leaves me utterly exhausted, so that by the time I get home I am a sobbing mess and can’t do anyting for the rest of the day.

    Not sure I will see out the whole course

    • It’s hard to figure out what’s worth it and what’s not. So frustrating that something that could help you has such an unnecessary energy/mobility cost. Best of luck to you.

      • Yes, it really is, I have the next 2 sessions in my diary before xmas and that is another £60 each way, I could really do without that cost!

        But I don’t want to turn down things which could help me, it is difficult to know what to do for the best…. maybe I could explain to them how much it takes out of me both physically and financially – although I already did explain the cost…

        • It’s probably a bit of a long shot and it may not work for you or the specifics of the program, but maybe you could do one or both of the remaining sessions via Skype or Google Hangouts or something like that?

          Or could they provide you with someplace to rest for awhile during and/or after the program? I did a workshop once where I was saved by being able to sneak off to a back room with a couch a couple times a day.

          • It’s not so much the workshops themselves, they are only an hour, it is the journeying into London.

            It is a good idea about Skype – I will ask, but I suspect the NHS has not got its head around that yet!

  9. Sounds like some of the crap they’ve tried to send me to. Luckily I’ve been able to avoid it, mostly as I’m not well enough to make the commitment to get out of the house every week. It’s so frustrating to time and time again meet health care professionals who has no clue how it is to live with chronic illness+pain and have no interest in listening to us who do. We are just being “negative”. I call it realistic, because on a bad day, I couldn’t even pick up the phone to … loosing the words … unbook an appointment. Took me 1.5 hours to get out of bed this morning, my boyfriend had to help me. I’ve needed to pee for an hour or so but can’t muster the energy to go to the toilet. Still my plans for today was for a much higher energy level, in case I felt ok. That’s positive to me but according to the person that handles your group I’m failing today by not doing it? Or yesterday for planning to do it when I didn’t know if I would be able to? As you say, we can’t plan our lives for the bad days/weeks.

    I have a friend who’s dying, she still plans for her daughter’s graduation party in a few years, dreams about the future etc. Should she stop living and dreaming now because she’ll die within a few years or so? Just lay down and die now? Shall we?

    I can’t tell you what to do but personally I wouldn’t have the time or energy to go through with 12.5 hours of nonsense that made me feel worse and brought up those memories. I boycott all health care professionals who talk down to me or is disrespectful in some way, it’s just not helping me or my health, quite the opposite.

    Take care.

    • Just realised this was an old post so some of what I commented isn’t really relevant now… how did it go?

      • Well, I decided not to go back. Instead, A bunch of people joined me in marking up one of the texts used in the course. When I get my act together I’ll organize a bit and get our comments and a letter sent in to the program directors and authors. So I think a constructive outcome. I felt good about it 🙂

        Best to you!

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  11. I’m *so* sorry you had to go through this. And I get your point about potentially being tagged as non-compliant. My second last neuro’s physician assistant flatly told me I was non-compliant after I tried to switch from a new med – Gabapentin – because I was convinced it was getting headaches from it, which she implied was impossible. Fast forward 2 or 3 years and there’s a class action suit in the US that claims exactly what I was experiencing. Ha!

    It’s incredible to me how many health professionals really don’t trust or listen to their patients, like we’re just an endless line of widgets with overbites and frizzy hair (well, maybe it’s just me with the frizzy hair). Sounds to me like this workshop dude was a lot more interested in hearing himself talk (or feeding his savior complex) than to provide you with a safe place to talk or any kind of meaningful assistance. Thanks for posting this, I’m very sorry you had to deal with this.

  12. THANK YOU so much for sharing this. It reminds me of a time that I was taking meditation classes with a Kundalini yoga guru. I really hoped he could help me but it started to feel like he thought that my chronic migraines were caused by me and my “negative” thoughts. Hmmmph. Then he urged me to read this book by Louise Hay called “You Can Heal Your Life.” I found it to be incredibly insulting bullshit. She writes pearls of wisdom such as “Forgiving and releasing resentment will dissolve even cancer,” and “We create ever so-called illness in our body.” She attributes migraine headaches to a “dislike of being drive, resisting the flow of life and sexual fears.” I never went back to him.

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  14. This reminds me of my experience in the psych ward recently. A nurse did a half hour presentation that we were to attend if we wanted it to seem like we were trying to get better. She talked about the awful side effects of anti-psychotic pills and it was so rudimentary. It didn’t address anything. She told a room full of chronic mental health patients to “drink more water” and “take a walk” to deal with the often devastating side effects of our drugs. And she kept barking at us to participate. No one wanted to appear “non-compliant”, as my disability studies professor would say. Because that is the worst thing to do as a patient.

  15. Thanks for this thoughtful post. I had a similar experience on a VERY similar-sounding course – complete with self-important facilitators and ranking goals on ridiculous numerical scales, and the ignoring of structural and social issues. My course was run by the NHS in the UK. I missed most of the sessions. It’s always good to hear that it’s not just me that feels like this.

  16. I googled images on chronic pain and ended up here. Boy, can I relate! Those seminars/courses and workshops are a joke and always make me respond extremely cynical. It doesn’t help but it gives myself some fun. Sometimes goals are just getting up and do at least something that day. I hardly ever give it room, words or any more attention than it already takes in my life. Ppl can read me differently because of it. One big plus: I’ve truely, completely let go of what others might think. Big relief and…fun. Badly needed in a life of pain.

  17. Rereading this eloquent post, and I just noticed that the workshop had fluorescent lights.

    Yeah, no.

  18. You’re probably through with replies as this post was made around two years ago or something, but thank you so much for writing this. I don’t get migraines, but I do have cerebral palsy…and most of the “research” or “help” I find about it is geared toward perfectly able and healthy parents, with CP babies or children. I often struggle with feelings of isolation, because so many people tell me things like “well maybe if you ate gluten free,” “maybe if you took this or that pill,” “maybe if you just exercised more…” It is a struggle to exist every day, and finding a support group is difficult. It is comforting to know that some people understand, even if it’s a double-edged sword as well. I’m simultaneously relieved and terribly sad when I do meet someone who understands my pain. Thank you again.

    • I’m sorry people so often treat you like that. There’s a part of me that thinks if migraine was better understood, people would stop telling me to do silly things to try and cure myself, but hearing the way people respond to CP dissolves that fantasy!

      May the shape of the world change to fit us better.

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