Wednesday, February 14, 2018

Tales of Trauma III: Living a Healthy Life with Chronic Pain? Bollocks!

I've been reading a number of books lately, some good, some bad. One of the healthcare professionals with whom I've recently met lent me a book called Living a Healthy Life with Chronic Pain (Sandra M. LeFort, Lisa Webster, Kate Lorig, Halsted Holman, et al... Bull Publishing Company, 2015). Besides the terrible writing style, the book is overly condescending. You can simply "choose" to live a happier, healthier life regardless of your chronic pain condition. It also assumes that your chronic pain is idiopathic, which, of course, mine isn't. They go on at great lengths about how "the healing has already happened, now the pain is all in your mind." Bullshit!

First of all, there are so many conditions where there is no physical healing. If the bones are rotting, or the cartilage has worn off of your joints and the bones are grinding together, if something is growing inside of you that shouldn't be, if you have Cancer or Chrones, etc...  then you are NOT in a position of having the healing completed.

It also assumes that there is only ONE way to heal, and that's physical healing. On page 15 they use the example of David:
David developed chronic hip and leg pain after a car accident. He has had four surgeries but still is in pain 15 years later.
OK, so as far as they're concerned David has "healed." There is no longer anything wrong with his leg and hip, but they continue to cause him pain. Yet at no point do they address that both surgery and car accidents cause trauma to the limbic system. Nobody considers that this chronic pain could be the result of unresolved PTSD.

The book does talk about the central nervous system's alarm system which is the basis of receiving pain signals. They talk about pain gates being stuck open, but they never consider WHY. Pain is traumatizing, and the body remembers. Even after surgery, the limbic system knows something is not right in his leg. It is also possible that the memory of that accident is "stuck" in the brain. This is how trauma works, for that part of the brain, time does not move. It is stuck in a moment of pain, and there's nothing you can do to talk yourself out of it. You need to treat the trauma.

On page 14 they talk about Fred and Joyce, both with chronic back pain. They use this as an example of how a great attitude can fix anything. Joyce is SO well adjusted that it's nauseating, while Fred is an asshole. On one hand, they don't talk about what Joyce is FEELING, only what she's DOING. On the other hand, they don't talk about Fred's internal processes either.

Fred is likely grieving. He took early retirement and sits on the couch all day. There is no indication as to what that means. They lack any sense of meaning or cognition of events. "Just get out there and make the best of it!"

But for a man to have to leave his work is a deathblow. I remember well that moment that I was told I wouldn't be going back to work. My surgeon looked at me with compassion and said: "That's not how this works, I'm sorry." What a thing to say to a 27-year-old, let alone telling a 55-year-old Fred that you're done here. We're talking about a man who has likely spent decades defining himself by his work, and now that's been taken away from him. There's no thought given to what that means.

In our society men are defined by our ability to work. When men meet for the first time they almost invariably ask "what do you do?" What they mean is "where do you work, and what do you do there." It's a subtle game of competition because we are not just defined by our employment, but it also determines our social value to others. I cannot erase from my mind the look on people's faces when I admit that I'm disabled. Suddenly you're a drain on the system, a leech, worthless, unworthy of attention. The book has nothing to say about this.

It also misses the point of the things we do, or don't do. Men are expected to be physically active, and often pain conditions are invisible. My prostheses are internal, covered in skin, so you can't see them, or the broken muscles, or the rotting bones, so why am I not helping move the cases of pop for the club picnic or helping put up the shed in the community garden? They don't know that I have a seven-pound lifting limit with the GOOD arm. We have to carry that, and there's no consideration of it in this book.

We also give up the things we used to love. I used to be involved in a number of martial arts, but it eventually became too painful to even maintain a peripheral relationship to my favourite past-time: heavy weapons SCA combat. I tried helping with tournaments and being involved in training, but there comes a point where the desire to throw on the gear and pick up a stick—knowing it is impossible—hurts too much. In time I lost all contact with my friends in that world. I just couldn't do it anymore. I couldn't even listen to them talk about the thing I loved so much, that was now beyond my reach.

When I see this example of Fred, I see someone who is grieving. I see it in my friends who have chronic pain. I see it in their eyes when they look at something that reminds them of the person they've had to leave behind. Chronic illness and disability are no different from a death, except that the reminder of everything you've lost looks back at you in the mirror every day.

In her book It's OK that you're not OK,(Sounds True, 2017) Megan Devine says that most of what we talk about in terms of grief is bullshit. She's right. What we get from our supposed support group, whether it's a death, disability, or chronic illness, are bullshit platitudes, blame, and condescension. I've had people say "but what have you learned from it" and "what must you have done to deserve that?" I've heard so many things and each one of them makes me feel angry.

What we need, when coming to disability and pain, is love and acceptance. We don't need your words of "encouragement" or anything else. What we need is to feel that we still have value in this world when everything by which we defined ourselves has been stripped away. Even the diagnosis and onset of chronic illness can be a traumatic experience. The brain tries to protect us from the news that our old life is over, and now we have to figure out everything again from scratch. Is it any wonder that we get "stuck?"

The entirety of the book on Chronic Pain basically says:
You may never know why you're suffering, but suck it up and try to make the best of it. Here is some shitty advice from people who have never been where you are but who know better than you what you should be doing and how to make the rest of us feel better about the terrifying possibility that we could be next.
I have found more value in every page of Megan Devine's It's OK that You're not OK and Bessel Van Der Kolk's book The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma (Penguin, Random House, 2014) than anything I've found in Living a Healthy Life with Chronic Pain. I think the difference is their experience.

Doctor Bessel Van Der Kolk is a psychiatrist, a research scientist, and an expert in trauma. He comes from a place of having healed his own traumas, growing up in the Nazi-occupied Netherlands. He's spent 40 something years studying trauma, putting people into fMRI machines to see how trauma works in the brain and developing tools to access those areas to reintegrate traumatic memories and heal the whole person.

Megan Devine, a trained psychotherapist, quit her private practice the day she saw her husband swept away by a river and failed to rescue him. (In fact, if the dog hadn't rescued her, she wouldn't have survived either.) Since then she's worked with thousands of grieving people, and her book is the result of this research into what works, and what doesn't, from a professionally trained perspective.

Living a Healthy Life with Chronic Pain is written by eight different authors, has an average sentence length of about 10 to 12 words, and reads more like a scolding than a supportive guide towards healthy equilibrium. It's condescending, simplistic, and in my opinion, utterly ignores the reality of what people with chronic pain conditions are experiencing. I honestly think that it's a workbook for people who want to feel proactive about someone else's pain so that they can feel better about themselves. I wrote many years ago about how people try to distance themselves from your disability experience. They need to feel that it can be fixed, or repaired in some way so that it's not terrifying for them to think "shit, that could be me." They always know that they would handle things better, they'd cope, they'd have a great attitude. It's self-protecting behaviour, and it's utterly useless to us.

...as is, I think, this book.

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