Sitting Down with Migraine Stigma

January 27, 2017

Two Sides of a Dangerous Coin
That the direct effects of chronic migraine are debilitating goes without question; the headache, light sensitivity, and nausea that sets in can become so severe it can cloud every other aspect of existence. In the face of it, sufferers may find they need to withdraw from social contact or work, taking on the condition alone in their own bedrooms with the blinds drawn. For loved ones and friends, understanding what’s happening to one suffering from migraine when they themselves haven’t experienced one isn’t easy; yet they do witness intense suffering while being, essentially, unable to do anything about it.

The most important thing you can do for someone with migraine is to try to understand and empathize with their condition. This is where, both historically and currently, trouble sets in. For a long time—especially when it wasn’t well understood—sufferers were pegged as “just” suffering from a headache. The scope and seriousness of migraine were not taken as a serious condition, not one “made up.” This led to a stigmatization of the individual suffering from it. What’s more, this stigma becomes internalized by the migraine sufferer. They start to believe it’s their fault when others respond negatively to their condition, which only worsens the matter. 

Social stigmatization for migraine sufferers is still prevalent in society. To effectively handle migraine, one needs to start by understanding this important, if unfortunate, fact.

Social Stigmatization
As defined in the medical community, “social stigma” is when a person is viewed and treated differently as a result of their condition. This can happen both consciously and even unconsciously. It leads to stereotyping, devaluation of the person, assuming they’re “faking it” or weak, and outright discrimination. Over the long term, evidence shows that stigma can have a drastic effect on behavior and quality of life.

What’s shocking about chronic migraine is how, even today, those who suffer from it still have to deal with social stigma. A study published in the medical journal, PLoS ONE, conducted by Dr. William B. Young and his colleagues, found that people with chronic migraine were more stigmatized than those with epilepsy.

Dr. Young and the researchers began the study with the question: Why is it that chronic migraine sufferers are socially stigmatized to the extent that they are? The participants in the study consisted of 123 chronic migraine sufferers, 123 episodic migraine sufferers, and 62 with epilepsy. After assessing the data, they determined that social stigma occurred with the greatest incidence when it caused a disruption in work. They found chronic migraine sufferers tend to take more time off from work than those with episodic migraine or epilepsy. When a person in the workplace is frequently absent, it can put greater pressure on their colleagues, since they often have to take on additional work than their own. If this happens frequently, it makes sense for resentment, even if irrational or unintentional, to build up among the rest of the team.

Internal vs. External Stigma
There are two types of stigma: “external” stigma, and “internalized” stigma. External stigma comes from those other than the one with chronic migraine. When this happens, chronic migraine sufferers may face differential treatment from their peers and other social groups, like family. When stigma is reinforced through repeated occurrence, those outside forces can become internalized by the individual. Since sufferers have experienced repeated negative reactions among their social groups, they internalize it, which can lead to various negative feelings, like guilt, insecurity, and so on.

Dr. Young’s study is of great importance since it was the most extensive look at stigma among chronic migraine sufferers to date. One of the most important findings of the study was that “[chronic migraine sufferers] are the most likely to identify with the stereotypes and negative labels that attach to migraine.”

It’s a sad state of affairs when those with chronic migraine feel more stress of anticipated poor treatment than an actual migraine episode.

Where Do We Go from Here?
Stigma affects the long-term health and happiness of those with those already dealing with chronic migraine. Dr. Young’s study offered up some tips for reducing this stigma in society through education, advocacy, and legal and policy interventions; at the organizational level through training programs for clinicians; and at the intrapersonal level, through counseling, therapy, support, and empowerment programs (check out reference #2 for more information).

A better understanding of migraine and stigma helps improve the lives those already suffering with it, while creating a more nurturing space over all. Shifting the public’s stigma takes time, but with dedicated effort it is possible.

However, understanding stigmatization is only the first step in chronic migraine treatment. In a subsequent blog post, we’ll talk about ways that individuals can aid in changing migraine stigma. Those with migraine should not feel like an outlier in their community or workplace. Their condition is not illusory. It’s a very real, very painful condition.  It’s important, then, that they receive the support of loved ones, coworkers, and peers, to help lighten their burden.       

References

  1. Watson, Stephanie. ‘The Stigma of Chronic Migraine – Harvard Health Blog’. January 23, 2013. Accessed December 13, 2016. http://www.health.harvard.edu/blog/the-stigma-of-chronic-migraine-201301235828.
  2. Young, William B., Jung E. Park, Iris X. Tian, and Joanna Kempner. ‘The Stigma of Migraine’. Edited by Pierre-Marie Preux. PLoS ONE 8, no. 1 (January 16, 2013): e54074. doi:10.1371/journal.pone.0054074.

 

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