Learning to be an Advocate for Your Health

I recently joined the American Migraine Foundation (AMF) Emerging Advocates program. The AMF developed this program to mobilize people with migraine and support advocacy efforts to fight stigma of the disease. As part of the program, I have been getting training about migraine and advocacy.

As someone who has had migraines for the majority of my life, since probably age 14 or 15, I am amazed at how much I am learning. There is a lot of misinformation and misunderstanding of this neurological condition. That’s why there is a need for advocacy.

One of the most interesting things I’ve learned so far is the impact migraine has on the individual and how advocacy can make a difference. The diagram at the bottom of the page shows the spheres around a person with a disability and then different areas of focus for advocacy.

Ven diagram of overlapping circles from top to bottom includes: 
Stigma
Disability
Signs
Symptoms

Symptoms

Symptoms are the inward feelings that indicate a disease. For migraine it is extreme pulsating or throbbing pain usually on one-side of the head. It can also be indicators such as nausea, vomiting, sensitivity to light and sound.

Signs

Signs are the outward indicators to someone else that you have the disease. These are harder to name for migraine. For a disease such as epilepsy a sign might be more outward such as a convulsion or staring off into space. Some people do have trouble with their words when they are about to have a migraine, but it might be hard for another person to notice that unlesss they were really tuned into that person.

Disability

According to the American with Disabilities Act (ADA), a disability is a physical or mental impairment that substantially limits one or more major life activities. A migraine can be considered a disability and a person can receive accomodations if it is serious enough to limit a person’s ability to perform their job. For example, if lighting, certain smells, or noises in someone’s workplace trigger migraines the person can ask for accomodations to those elements. The person must also be qualified for the job and able to perform the essential duties and the employer must be covered under the ADA. Examples of accomodations would be allowing a person work in an office where the lights can be adjusted, teleworking or flexible schedules, or implementing a fragrance-free environment.

Migraines are not included as one of the conditions that can be used to quality for Social Security disability benefits, but some people do qualify if they prevent them from working or were caused by another condition.

Stigma

A stigma is a prejudice, discrimination and loss of status from a disease, diagnosis or trait. HIV, depression, and epilepsy are diseases that are stigmatizing to the people that have them and lead to lower quality of life, and employment rates.

There is a long history of stigma associated with migraine. Starting in the 18th century, people with migraine were represented as privileged, self-absorbed individuals, who used their migraine as an excuse for shirking social duties and avoiding social responsibilities. In the 19th century, migraine was perceived as a weakness of women in the lower socio-economic classes. 

only 22% of employers said migraine was a “serious enough reason for an employee to be absent from work.”  

Today, doctors study stigma via an objective stigma measure. When they compared migraine stigma to the stigma of other neurologic diseases such as stroke, epilepsy, multiple sclerosis, Parkinson’s disease, and motor neuron disease, the stigma was as high for migraine.

In addition, in other surveys it is clear that a stigma exists. For example in a survey by a medical insurance provider, only 22% of employers said migraine was a “serious enough reason for an employee to be absent from work.”  

Stigma also exists around funding research for migraine. Migraine research funding by the National Institutes of Health (NIH) is the lowest relative to disease burden among the most impactful diseases. In 2007, NIH funding per disability-adjusted life-year was:

  • Migraine: $29 or $0.36 per-person-with-disorder
  • Epilepsy: $739 or $35.15 per-person-with-disorder
  • Stroke: $232 or $48.57 per-person-with-disorder

Interpersonal and Institutional Advocacy

Advocacy can occur in different spheres as well. People with migraine and other diseases do it everyday as they talk to other people about their condition. This is interpersonal advocacy. It happens when a person explains that migraine is more than a “just a headache,” or talks to their employer about working from home because they know they won’t get a migraine if the do, unlike when they work at the office. Other examples of interpersonal advocacy include working with your doctor to get the right treatment even though they don’t believe you or think you are trying to get drugs. It’s changing perceptions about migraine and letting people know it does matter.

Institutional advocacy is working to change the bigger systems that affect a larger environment. It’s advocating to increase funding for migraine research. It’s making it easier for people with chronic migraine to get insurance coverage for medications they need.

Overall, advocacy can be as big as making a change that impacts thousands of people or as simple as telling someone you have migraines.

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