Tag: patients

Favorites, Society

Our Thoughts Do Not Cause Illness, We Cannot Think Our Way to Health

Kerrie Smyres

What’s the likelihood that the content of the community college meditation class I’m taking in order to qualify for student health insurance would infuriate me? Almost inconceivable, I would have thought, just as I would have thought it impossible that a PowerPoint could cause me to literally shake with rage. The first slide says:

“If you don’t want to be ill… Speak your feelings.

Emotions and feelings that are hidden, repressed, end in illnesses as: gastritis, ulcer, lumbar pains, spinal. With time, the repression of the feelings degenerates to the cancer. Then, we go to a confidante, to share our intimacy, ours “secret”, our errors! The dialogue, the speech, the word, is a powerful remedy and an excellent therapy!”

And it goes on slide after slide with similar explanations after each of the headings, “If you don’t want to be ill…”

  • “make decisions”
  • “find solutions”
  • “don’t live by appearances”
  • “accept”
  • “trust”
  • “do not live life sad”

Really? All I have to do is think the “correct” way and I won’t have chronic migraine? Gee, sure wish I’d known how easy it is to erase a neurological disorder. And I bet my doctors haven’t told me about this quick fix because they’re shilling for pharmaceutical companies.

Our thoughts do not cause illness. In case that’s not clear: OUR THOUGHTS DO NOT CAUSE ILLNESS!

As with so many widespread misguided notions, there’s a grain of truth in the connection between thoughts and illness. Stress, which is often intensified by thoughts, can exacerbate many already existing illness, including migraine and other headache disorders. Chronic stress can lead to ulcers, heart disease or adrenal failure. Still, stress is not solely perpetuated by thought, but also by circumstance. Furthermore, a genetic predisposition to a particular illness is usually present in those who develop so-called stress-related illnesses, and environmental factors can also contribute to illness. In other words, the connection is not as simple and clear-cut as this PowerPoint states.

Illness is fickle and cruel. It cannot be controlled, despite our greatest wishes. It can’t even always be treated. Our thoughts can make illness easier to bear (read How to Be Sickfor fabulous guidance on this), they can inspire us to keep trying, but they cannot, cannot cure us. Perpetuating this belief comes at the great cost of further alienating the sick from the healthy. People with illness do not need judgment and righteousness, but understanding and support.

Plenty of people are brimming with negativity and hatred, but are perfectly healthy. Many others are fonts of optimism and hope, yet are mired in chronic or life-threatening illness. We are not to blame for being sick, our thoughts are not to blame. No matter how many people, how many teachers, how many PowerPoints by doctors with unspecified credentials may tell us otherwise.

Society

The Stigma of Illness: Blaming the Patient

Kerrie Smyres

A Sick Stigma: Why Are Cancer Patients Blamed for Their Illness? is yet another article about cancer with a message that rings true for headache disorders. It examines the ways in which healthy people blame patients for illness, why they do so, and how patients internalize these messages and beat themselves up. The following paragraphs particularly spoke to me:

“Judgments about behavior not only unsettle and stigmatize the patient, but reflect the interrogator’s own insecurities. Frequently, those disease detectives are attempting to regain a sense of control amid the inherently random and sometimes unjust world that we all reside in, according to researchers who have studied stigma.”

“’I think that in one part there is a fundamental assumption in our society that the world is a just place, and that bad things don’t happen to good people,’ says Gerald Devins, a stigma researcher and senior scientist at the Ontario Cancer Institute in Toronto. ‘And I think when bad things happen to good people, it’s threatening to everybody.'”

‘Secondly, you can say knowledge is power in a sense,’ Devins says. ‘If we feel like we understand something, it gives us the illusion of control.’”

These are similar to arguments I made in It’s Not About You on Migraine.com, with the bonus of being rooted in academic research, rather than personal experience. Illness — whether curable or chronic, life-threatening or not — scares people. Blaming the patient is a way to allay these fears and allows the currently healthy person to believe they have the power to avoid illness.

Chronic Migraine, Coping, Symptoms

My Latest Posts for Migraine.com: “Shoulds,” Comparisons & Prodrome

Kerrie Smyres

Oops! I’ve forgotten to share my most recent Migraine.com posts with you. They’re just like what I write for The Daily Headache, just published somewhere else. My latest:

  • Wrestling With Self-Criticism and “Shoulds”: “I have that nagging voice that says, ‘You’re so much better than you were. Why aren’t you doing more?’ I try reminding myself that ‘better’ is far from great, but I still feel like I’m not doing enough.”
  • Migraine Perspective: No Two Migraineurs are Alike: “Human nature is to assume everyone else experiences something the same way we do. Like snowflakes, no two migraineurs are alike. Our migraine attacks differ, as do our responsiveness to meds, our support systems, and our ways of coping emotionally differ.”
  • Prodrome: Migraine Warning Signs: “Tearing is the most reliable warning sign for me. Sometimes it is accompanied by yawning, but not always. Frequent sighing is often a predictor, though I also sigh a lot when I’m physically tired and it can be hard to tell which is which.”

Take a look around while you’re there. Migraine.com is a tremendous resource for information and support. I feel fortunate to be part of the team of patient advocates and to work with the Migraine.com staff.

Coping, Reader Stories

Your Headache Stories, Part 3: From M

Kerrie Smyres

M has been through the wringer and is still searching for help.

I remember my first ‘sinus headache’ when I was maybe 11 or so . . . that’s what my mom called them. I suddenly hurt so bad I could not finish some stupid book report I was working on. So we called them sinus headaches up until I was around age 30. We both suffered and used heat compresses and rubbed our temples, etc. The ‘family pain’ — one of many, ha, ha, ha.

After many sinus infections, and debilitating painful headaches, when the mask of pain would descend over my face, sinus surgery had become my only option. The doctor told me that one of the side effects of the surgery could actually be the transformation and worsening of my migraines but I had to take the chance.

Good news is I barely have any snot anymore . . . never blow my nose, no infections. Very bad news . . . my migraines transformed and continue to transform into what I think of as another person/entity in my life. And he is definitely running the show. No one around me understands this pain in my life except for one person, who suffers also. If I did not have him, I am not sure what I would do.

I have a great neurologist. He runs a headache center in NYC, has written books, even developed an all natural pill to help migraineurs. No cure yet. I have been on Imitrex, Xanax, Valium, Effexor, Wellbutrin, Relpax, Zomig, Maxalt, magnesium drips, Botox, Percocet, hydrocodone, steriods, Zonegran, Frova, niacin, Migrelief. And currently feel just about as bad as I ever have. And pretty hopeless.

So, for now, I am sticking with the regimen of Zonegran, Maxalt, magnesium drip, and opiates as needed. This beast wears you down . . . most days I just want to get by. It has changed who I am. From energetic and outgoing to tired, pained and secluded. I only hope that I turn ‘a corner’ soon and can tackle the beast.

Other readers’ stories that have been posted are Jantha’s story and Audra’s story. If you’d like to share your story with readers (or just with me), please e-mail me.