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How Stigma Can Affect Support Given to Those With Migraine


Last month, my chronic migraine support group discussed stigma. I didn’t think I’d have much to contribute. I have supportive family and friends who have never questioned the severity of my condition. I have had amazing employers and co-workers who have made accommodations for me and supported me. I received private and Social Security Disability benefits the first time I applied for them. I am lucky.

In the last few weeks, however, I have been reflecting on the stigma surrounding migraine. I realized I have minimized its impact on me. I have focused on those who have supported me and forgotten about the pediatrician who told me my headache was caused by stress and prescribed a day of playing hooky from school as a remedy. I forgot about my kind general practitioner doctor who did not have enough migraine training to give me an appropriate treatment plan when my headaches became a daily occurrence. I forgot about the neurologist, to whom she referred me, who explained that my headaches were just stress from being an elementary school teacher. I forgot about my principal who refused to ask staff to not wear perfume on days when I had to be in meetings with them. I forgot about my superintendent who did not approve my use of my earned sick days when migraine forced me to stop teaching and go on a medical leave.

I did not fully consider that if migraine research were fully funded, I might have a treatment plan that would allow me to work and socialize. I might have better access to headache specialists and I wouldn’t have had to move to one of the 28 areas in the US with headache centers to avoid an eight-hour round trip drive just to see my migraine doctor. I wonder, if migraine stigma didn’t exist, would I have sunk into a depression and had to move in with my parents so they could make sure I didn’t do anything drastic?

 

There is much we can do to end the stigma that surrounds migraine. It doesn’t just affect people with migraine, their family, friends and co-workers – it affects us all. The US annual direct and indirect economic costs of headache disorders exceed $31 billion. That is a burden that impacts all of us.

Please continue to read to learn more about migraine stigma and what you can do to silence it.

How Stigma Can Impact Migraine Support

– Patients may minimize their condition and consider it “just a headache.” They may not seek adequate help.

– There may be very little migraine training in some undergraduate medical programs, even though it is one of the most common disorders doctors see. Doctors might site “stress” or “type A personality” for the condition. They might be dismissive, do not diagnose migraine, do not prescribe medication or do not prioritize care.

– Patients may not be taken seriously by family, friends and co-workers. They may feel “ashamed” or “weak.” This can cause their self-esteem to fall, potentially leading to depression or isolation.

– Some doctors may think migraine patients are “whiny,” “neurotic” or “can’t handle pain.” They may consider the sub-specialty uninteresting and avoid becoming headache specialists.

– There is a shortage of board-certified headache specialists which results in many patients receiving poor care or having to travel and wait several months for an appointment. There are only about 500 specialists for 38 million patients.

– The workplace environment (including scents, lights and noises) can exasperate the symptoms of workers with migraine. Some workplaces do not consider migraine a valid reason to miss work.

– Migraine may be thought to be “just a headache.” Federal funding of migraine research is much less than other disorders with a similar disease burden at only $18 million.

– Few celebrities become spokespeople for migraine, perhaps because they fear the negative effect of their condition being known. Portrayals of people with migraine often perpetuate negative stereotypes.

– The Social Security “Blue Book” does not list migraine as a condition that might cause disability and this makes it more difficult to qualify for benefits.

– People may be seen, or see themselves, as being migraine.

Ways to Silence Stigma

– Patients can fight self-stigma by educating themselves, stopping self-blame and not minimizing their symptoms. This may require help from a counselor or support group.

– Advocate for reform in medical education and training. One way to do this is by participating in Miles for Migraine races, advocacy and education events.

– Educate others about the severity of migraine.

– Show empathy and compassion for people with migraine.

– Respectfully challenge people when they perpetuate stereotypes of people with migraine and the disease itself.

– Advocate for an increase in specialists and raise funds to support headache fellowships. Miles for Migraine funded two fellowships in 2016.

– Encourage equality in how people perceive and treat individuals with visible and invisible illnesses.

– Educate others about the Americans with Disabilities Act (ADA) and the Family Medical Leave Act (FMLA).

– Advocate for greater research funding. Attending Headache on the Hill is an excellent way to do this.

– Be conscious of your language. Say, “person with migraine,” not “migraineur,” which implies that migraine is the person’s entire being. Refer to migraine as a disease one always has, like having diabetes. Instead of saying, “I have a migraine” you could say, “I am having a migraine attack” or “my migraine symptoms are flaring.” Don’t limit your symptoms to “a headache;” migraine is more than a common headache.

– Talk openly about your experience and encourage others to do the same.

– Push back against negative characterizations of people with migraine in advertisements and the media.

– Advocate for change in disability criteria and educate others about the severity and impact of living with chronic migraine.

– See the person, not their illness.

Hopefully, our efforts will lead to better support for people with migraine, where:

– Patients are proactive and get the help and support they need in order to live a fulfilled life.

– All doctors have a basic knowledge of migraine and are able to treat their patients or refer them to a specialist. Patients quickly receive an appropriate diagnosis and treatment, including any needed prescription medications.

– Patients are honored and supported as they deal with migraine.

– Patients are seen as deserving of care. Doctors want to work with migraine patients.

– Patients are able to see knowledgable and experienced doctors, who specialize in migraine, in a reasonable amount of time.

– Co-workers and employers make accommodations to support workers with migraine. They are understanding when workers need to miss work due to migraine.

– Migraine is recognized as having a significant disease burden and funded accordingly by the federal government.

– Celebrity role models and positive characters in advertisements, television programs and movies represent life with migraine accurately and compassionately.

– People with migraine are able to go on disability if working becomes too difficult.

– People are seen, and see themselves, as having migraine as one aspect of their life.

For more information on silencing stigma visit Miles for Migraine and Alliance for Headache Disorders Advocacy.

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Thinkstock photo via cindygoff.