Research Confirms Migraine Patients Deal with Extreme Stigma

All of us who live with migraine know very well the kind of bias associated with living with this disease. Everyone from friends to family members to co-workers and employers misunderstand the nature of our condition, minimize its impact on our lives and sometimes even discriminate against us.

In the largest study of migraine-related stigma ever conducted and the first done in the United States, the research of William Young, Migraine.com’s own Joanna Kempner and other colleagues at the Jefferson Headache Clinic provides strong confirmation of our patient experiences with stigma.

migraine-stigmaThe researchers recruited patients from the Jefferson Headache Clinic and Jefferson Comprehensive Epilepsy Center for the study. 123 patients lived with episodic migraine, 123 lived with chronic migraine and 62 lived with epilepsy. The researchers formulated a questionnaire for patients participating in the study to assess demographic characteristics, determine the ways in which they are impacted by migraine disease in their daily life activities and the level of stigma and discrimination they deal with due to their disease.

The researchers defined stigma as “an established construct in the social sciences that describes a characteristic, trait, or diagnosis that discredits individuals and elicits prejudice, discrimination, and loss of status.”

They determined inability to work was associated with the greatest stigma among patients across all conditions. As chronic migraine patients were far less likely to be able to work due to the burden of living with migraine disease (almost 50% were completely unable to work), chronic migraineurs experienced greater stigma and discrimination than either episodic migraine patients or patients with epilepsy. This was true despite the fact that the overall levels of stigma were similar for both chronic migraine and epilepsy patients. Further, chronic migraine patients experienced the same high level of stigma across age, income and education differences.

There are a few important takeaways from this significant research:

  • The stigma we believe we deal with is very real. This is true both of our internalized stigma and stigma imposed by others upon us.
  • Stigma significantly impacts our social relationships and employment and career opportunities.
  • Stigma helps explain the vastly inadequate level of research funding for a disease with the kind of broad, devastating impact of migraine. It’s simply not perceived as serious or life changing, thus policy makers see little need to allocate more money toward research and those conducting research may be less inclined to place any value on studying it.
  • We should take similar steps to those taken by the epilepsy community to reduce stigma on a number of fronts: public education, advocacy and legal efforts; training programs for doctors and their staff; and on the individual patient level through programs that provide counseling, support and empowerment.

Strengths of this research include the use of validated instruments assessing the patient participants and the size of the sample population.

The researchers acknowledge that a key limitation of this study may be that because study participants were recruited from highly specialized clinics, the findings may not hold up generally. Further, they did not differentiate between different types of epilepsy or separate out patients with migraine with aura.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
View References
1. William B. Young, Jung E. Park, Iris X. Tian, Joanna Kempner. The Stigma of Migraine. PLoS ONE, 2013; 8 (1): e54074 DOI: 10.1371/journal.pone.0054074, accessed January 17, 2013. 2. “The Social Stigma of Migraine: Worse Than Epilepsy,” Thomas Jefferson University, January 15, 2013. http://bit.ly/XHrRTf, accessed January 17, 2013.

Comments

View Comments (10)
  • slhart
    6 years ago

    I’m a chronic migraine sufferer and I’m having trouble with my short term disability insurance at work. My doctor agrees that I cannot work but the insurance company is trying to deny my claim. I don’t think we have a chance if our doctor’s word can be disregarded??

  • MigrainesAlwaysHaveOne
    6 years ago

    I am so sick of the prejudice or ignorance about migraines that I now tell people I have a neurological disorder or disease. If they press me further, I tell them it is related to seizure disorders but with a different set of syptoms. I am sick of people saying, oh I get headaches too. Yeah right, do you take fistfulls of pills every week to stay out of pain and spend half your life lying in bed – I don’t think so. I wish everyone could get a migraine just once to experience it. Especially health care workers! Problem is, we don’t look sick – especially when we don’t have a migraine – although one could be right around the corner.

  • Julie
    6 years ago

    Thank you for posting this article. It just hammers home the fact that migraine suffers are still not being taken seriously. The stigma is still too real and we are still viewed as a nuisance and only suffering “headaches” instead of a debilitating neurological disease that not only involves incapacitating head pain, but the vertigo, nausea, aversion to smell, sensitivity to lights, sound, cold, heat, ringing and popping in the ears and the difficulty of treating with “off label” medications due to trial and error with their side effects and the comorbidities that accompany the migraine disease as well-depression, fibromyalgia, chronic fatigue syndrome, PTSD-the list goes on. Chronic ongoing pain and the risk of suicide is also a factor due to the chronic depression that accompanies all sufferers, that too must be taken into account. But yet all this is over looked as the stigma seems to grow and makes the sufferer seem more and more insignifigant and unimportant and in the end ignored. That is why it is so important that therapy is key to ones treatment plan so that they can work thru the stigma through society but also through what they encounter with family, friends and loved ones as well. It’s a harsh cruel world that we must navigate and oftentimes if feels like we navigate it alone without the support of our online support groups and therapists. Thank you again for your support and information.

  • Julie
    6 years ago

    I meant to say we are alone if not for the support of our online support groups and therapists. Sorry for the typo. Working through one of those migraines 🙁

  • beniceshaw
    6 years ago

    Once again we see why people misunderstand us. I find that unless someone actually can see that you are suffering they do not take you seriously. I have a male family member who has chronic migraines, when seeing a new doctor he was virtually called a liar. So if physicians have this attitude ( not the first doctor I have run across with this viewpoint ) how can we expect the general public and politicians to be better informed?

  • barryolliver
    5 years ago

    The one time I chose to see a neurologist privately, instead of going through our public health system, it was clear that he didn’t believe any of the symptoms I described. He wouldn’t even accept that I frequently experience a visual aura that can last up to 2 hours before the pain kicks in. He was quite adamant that such auras never last more than 15 minutes, and actually wrote down in his report that I “experience visual aura for up to fifteen minutes prior to the onset of pain”. On the second consultation, I was coming out of a severe migraine when I saw him. In fact I had little memory of the 2-hour journey to see him. He didn’t recognise that I was coming out of the attack, and decided the symptoms I displays were “due to nervousness caused by a family member being present during the consultation”! His solution was to evict the family member for the consulting room. If I had been more aware of the reason, then I would have protested strongly. But as I was still in a confused state, I was not really aware of what was going on.

    It’s true that even those who are supposed to be specialist in migraine treatment, are less than understanding if your symptoms don’t match the textbook definition of a migraine.

  • Best Dessert First
    6 years ago

    yea the few times I have had to go to the ER for my migraines I get oh you have a headache. I have had migraines all my life Iam 52 now

  • danlevesque
    6 years ago

    HI, thank you for this article. It is very insightful to a migraineur. I am still very confused about the governments lack of understanding of the actual debilitation we go trough daily. They are not protecting us from being labeled as fraudsters, fakers etc…We only have each other in this time of need. I read this sire daily, so to as know I am not alone and the pain really is there. I suffer daily level 8 migraines and look upon as a lazy person who does not want to work or attend social gatherings. It is tough, hopefully something can be done in collaboration with the epilepsy community.
    Thanks for listening
    Dan

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