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Chronic Illness Workshop Fail

In Chronic Pain Workshop Totally Unprepared for Patient With Chronic Pain, Sarcozona, who is a PhD student with chronic migraine, highlights a serious issue for people with all kinds of chronic illness: Being sick doesn’t come with an instruction manual. When a chronically ill person seeks out guidance, the advice they find is often useless at best; some of it is actively harmful. Sarcozona’s experience in a chronic illness workshop falls somewhere in between, largely because she used it to fuel her own fire rather than internalizing the criticism and bad advice.

She attended a multi-week workshop on living with chronic pain that was developed by a Big Name Medical Center. The program has received high acclaim; I even considered becoming a facilitator for it. Her experience was awful. The facilitator was certainly a problem, but the book the workshop was based on was also terrible. Here’s her take on the book:

“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.”

(Yes, scrubbing the bathroom with a toothbrush was an actual recommendation for coping with the emotional fallout of chronic pain. When I was at my sickest, scrubbing my teeth with a toothbrush was sometimes impossible.)

That’s only a short excerpt. Take a look at Sarcozona’s original post – it’s insightful, informative and well-written. While you’re there, checkout her other wise writing on migraine.

Not all chronic illness workshops miss the mark. The mindfulness-based stress reduction workshop I did was fantastic. I was frustrated and annoyed with the concepts at the time – “Yeah, like I can think of the pain as a ‘sensation'” and “She has no idea what it’s like to feel like I do” were among my kinder thoughts – but they have changed the way I think about illness and how I approach life in general. In a related secular take on Buddhism, How to Be Sick, by Toni Bernhard, is a great resource. (She’s at work on a book about using mindfulness to cope with chronic illness. I’m eager to see what she has to say and how it complements the MBSR materials). I also recommend Life Disrupted, by Laurie Edwards. It isn’t as directly instructional as How to Be Sick, but contains much food for thought. I’m working on a review of it that I hope to share with you soon.

Have you done a chronic illness workshop that helped you or read any particularly useful books? If so, please share!

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Leaving One’s Body to Survive Severe Migraines

After two months of my pain topping out at 5 most days and 6 every once in a while, a level 7 migraine hit in the early hours of Monday morning. What surprised me most is that only two months had passed since I’d had that much pain — it felt much longer. In that time I tried to remember what level 7 and higher pain felt like and how I managed to survive it. Because, while 5 and 6 pain isn’t bad compared to what it could be, it is definitely uncomfortable. I couldn’t fathom how I handled worse pain. The difference, I realized Monday, is that when the pain is 7 or higher, I leave my body. I dissociate and a quiet stoicism sets in.

Over the years, many people have recommended that I “go into” or “stay with” the pain. That trying to escape the pain actually worsened the sensations that I felt. Only by being present with my pain, according to this philosophy, would it ever lessen. To them there was a direct correlation between one’s ability to be with pain and the amount of pain that one felt. That is, if you stay with the pain, the actual physical sensation will lessen. From my experience, being present with the pain in mindful meditation improve the ability to emotionally cope with the pain, but not the amount of physical pain itself.

Furthermore, the body can only handle so much. The sense of leaving one’s body while experiencing severe pain is a natural coping mechanism. This dissociation is the body’s way of preserving itself.

Take a look at the upper levels of the TIPNA comparative pain scale, which I’ve excerpted below. The emphasis is mine.

Level 6
Strong, deep, piercing pain so strong it seems to partially dominate your senses, causing you to think somewhat unclearly. At this point you begin to have trouble holding a job or maintaining normal social relationships. Comparable to a bad non-migraine headache combined with several bee stings, or a bad back pain.

Level 7
Same as 6 except the pain completely dominates your senses, causing you to think unclearly about half the time. At this point you are effectively disabled and frequently cannot live alone. Comparable to an average migraine headache.

Level 8
Pain so intense you can no longer think clearly at all, and have often undergone severe personality change if the pain has been present for a long time. Suicide is frequently contemplated and sometimes tried. Comparable to childbirth or a real bad migraine headache.

Level 9
Pain so intense you cannot tolerate it and demand pain killers or surgery, no matter what the side effects or risk. If this doesn’t work, suicide is frequent since there is no more joy in life whatsoever. Comparable to throat cancer.

Level 10
Pain so intense you will go unconscious shortly. Most people have never experienced this level of pain. Those who have suffered a severe accident, such as a crushed hand, and lost consciousness as a result of the pain and not blood loss, have experienced level 10.

For more than a year my pain was rarely less than a 7 and hit 8 or 9 nearly every day (migraine isn’t mentioned in 9 on the scale, but these were 9s for sure). By this scale, I was basically in childbirth for more than a year. “Going into” pain that severe and frequent will certainly stop the pain — because it will result in suicide.

Dissociation (and its cousin distraction, with which it pairs well) are powerful tools for coping with migraine. Tools that others may believe we are weak or not trying hard enough when we use them. Even if the shame isn’t outright, so many migraineurs seem to internalize such messages and gnaw on them as guilt.

Forget the shame and guilt. Use every possible tool available to you to get through a migraine spell. Leaving your body for a while when you’re in massive pain isn’t harmful. Getting caught up in a book or movie isn’t going to make your migraines worse. Dissociation and distraction are lifesavers. Literally. Trust me on that one.

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Clinical Trials for Treating All Sorts of Headache Disorders

ClinicalTrials.gov is the place to go if you’ve considered participating in a clinical trial for your headache disorder, These are just the latest in 142 headache studies recruiting participants or will be recruiting soon.

Nearly every headache disorder is represented: cluster, tension-type, post-traumatic, migraine, cervicogenic, lumbar-puncture, medication overuse (rebound)…. Treatments range from medication and surgery to diet, coping skills training, relaxation, meditation, yoga, exercise… Again the list goes on.

The diverse collection of current studies include:

Even if you’re not interested in any of these studies, checking the government’s clinical database regularly may turn up something new that works for you. Searching for “headache” gets the most results, but you can also search by specific headache type. For example, there are 74 active studies on migraine and seven on cluster headaches.