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The Stigma of Illness: Blaming the Patient

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.

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Internalizing the Stigma of Migraine

The stigma of migraine and society’s perception of illness, as well as the internal voice that judges me during a migraine attack have all been swirling around in my mind lately. The topics came together in Internalizing the Stigma of Migraine, which quickly became my most popular post on Migraine.com. I’m both saddened by the number of people who identify with this experience and honored that I can give voice to the torrent of emotions that accompany migraine.

Here’s a short excerpt from Internalizing the Stigma of Migraine:

I have to wonder if I and so many other migraineurs berate ourselves not only because other people regularly distrust that migraine is a true physical illness, but because we have internalized those same doubts.

This is where the stigma of migraine is especially damaging. Dealing with people who don’t understand — and don’t seem to want to understand — what we’re going through is frustrating and infuriating. Believing it ourselves is way more harmful because it demoralizes us and causes us to question the legitimacy of our own experience.

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Migraine Beliefs & Their Cultural Context

Who do I blame for my beliefs about myself because of migraine? No one. I can’t single anyone out because I can’t deny the cultural context in which my notions were formed. (Yes, I know that sounds like grad student speak. Stick with me anyway.)

Think about how few doctors understand migraine today and how much is still unknown about how migraine works in the brain and body. Now consider how paltry the knowledge was 25 years ago, when my “headaches” became chronic. Without one-sided pain or a visual aura, a pediatrician or internist would not consider migraine as the culprit.

There was no way to verify or quantify my ailments when I complained of symptoms like nausea (but rarely vomiting), ear pain (but rarely any sign of infection), and dizziness. Add to these factors that the symptoms typically came on without warning and also lifted suddenly, often leaving me feeling perfectly fine on weekends. If I didn’t know what I now know about migraine, I, too, would probably think a child was making up her illness.

Remember that 95% of the world’s population has a headache at some point. For most of these people, a headache is mild and easily remedied with an OTC painkiller or a little time. Headaches are dismissed as no big deal because they are not a big deal for the vast majority of people.

I no longer refer to the pain I feel with a migraine as a headache, but as head pain. This is a new realization, one I didn’t have even eight years ago when I named this blog. For a kid, pain that occurs in the head is thought of as a headache. I had no words to explain or even a way to conceptualize what was happening in the physical area of my head as something other than a headache.

Furthermore, society dismisses the significance of illness altogether. Cancer and other life-threatening illness are treated with reverence and fear, but their true impact is also minimized. People who push themselves beyond their physical limits and refuse to acknowledge the possibility of death are praised for their bravery. Acknowledging how physically devastating treatment can be, that the odds of survival are low, or fear of death is considered “negative thinking,” which is taken as a sign the person isn’t trying hard enough.

An illness that has no visible signs (to the untrained eye), no diagnostic tests to prove its presence, is not immediately life-threatening, and has “headache” as its primary feature has little hope for being taken seriously. Never mind that the World Health Organization determined that severe, continuous migraine as disabling as quadriplegia and that chronic migraine is responsible for more years lost to disability than every other neurological illness combined*. These and other facts and statistics are painfully slow in spreading to the public’s consciousness. As much as my advocate’s heart doesn’t want to believe this, an illness with as much baggage as migraine may never be recognized as the life-changing, debilitating scourge it can be.

I wrote Migraine Beliefs because I know I’m not alone in internalizing these cultural messages. The harsh, harrowing truths I acknowledge are the reality of living with a poorly understood and highly stigmatized illness. I can only play a small role in raising society’s consciousness about migraine, but sharing my truth helps connect all migraineurs. If my words can reduce even one person’s emotional pain, loneliness, and self-blame, I have succeed.

*My headache specialist just shared this fact with me. The WHO report with that information does not appear to be online yet, so I can’t link to the source.

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Excedrin Migraine Changed the Ad!

In response to complaints about the women and shopping ad, Excedrin Migraine has replaced that “fact” on Migraine.com. The new ad says “70% to 80% of people who get migraines have a family history of the disorder.” Thanks for all your comments. Please stop by Excedrin Migraine’s Facebook and Twitter pages to thank them.

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When All Else Fails: Pain Management with Opiods

When someone lives with chronic debilitating headaches, opioids are the last line of defense. After trying a gazillion preventives and abortives with no success, reducing the severity of the pain is worth potentially living in a drug haze.

However, many of those who do “cross over” to opioids describe feeling like they’re treated like drug addicts and that their docs don’t prescribe enough meds each month to cover all their painful days. They also worry that maybe the doctor is right — maybe they are drug addicts.

The stigma makes it hard to ask for drugs. Remember that if you are a chronic pain patient, there is absolutely nothing wrong with asking for meds to dull the pain. Quite simply, if you don’t get pain relief from less potent approaches, you should seek better relief.

Doctors will be cautious in prescribing opioids and may not do so on your first visit. It’s his or her job to keep you healthy — feeding a drug addiction isn’t healthy. It is frustrating but it is also safe. The doc doesn’t know you and doesn’t truly know what you’ve been through. They also have the government breathing down their necks, making sure the docs aren’t just supplying addicts with drugs.

I’m tackling this topic after giving a friend suggestions on how to convince her new pain specialist that she’s ready for opioids. The message reads like I am advising her to rely on manipulation to get her doc to prescribe narcotics! That’s not the approach I want to take, but it can be outrageously difficult to get the pain relief you need.

The topic is ginormous. I don’t want to bite off more than I can chew, so I’ll noodle on the topic some more. Think of this post as a sort of thesis statement for other posts on pain management and opioids.