Headache expert perspective
Migraine is the most common neurological disease and, in adults, it has the largest overall impact after stroke, and the largest effect on disability. Relative to its huge impact, society allocates to migraine only a small fraction of the resources it should be getting from the research community and the treatment infrastructure. This is in part due to the stigmatization of the headache patient and the doctors who treat them. This stigma results in low levels of advocacy relative to disease burden. Advocacy drives access to resources and policy changes that favor those with larger, more vibrant advocacy efforts.
Stigma is an attitude by society that undercuts the value of the individual with a condition or disease, poisons their identity and leads to social sanction or discrimination. Social stigma affects many diseases. Enacted stigma from public policies, and individual statements and attitudes become internalized and lead to a decreased sense of self-worth and eventually this can have profound mental health consequences. Disease related stigma impairs quality of life in several ways ( Table 1 ). It impedes the seeking of health care for the stigmatized condition, increases mental health burden, and may increase pain itself. Many diseases and conditions have been shown to be stigmatized, for example obesity, HIV, and mental illness. Stigma is intertwined with bullying.
| Type of stigma | Definition | Migraine specific examples |
|---|---|---|
| Structural | Prejudice and discrimination by policies, laws, and constitutional practice | Lack of accommodations—leaving class, access to medication, making up tests, lack of quiet environment for learning |
| Public = enacted | Stereotypes, prejudice, and discrimination | “It’s just a headache” from a parent, teacher, or friend “I get migraine, and I can do that” bullying |
| Self-stigma = internalized | Shame, low self-esteem, lack of engagement in treatment | Not seeking a diagnosis, or treatment Negative self-talk |
In adults with migraine, stigma can be severe. As might be predicted for an invisible disease, stigma relates to the degree of disease-induced disability, and not to visible signs of disease. In other words, migraine becomes very stigmatized when it affects functioning in performing a social responsibility, such as work in adults, and school in children. Men stigmatize people with migraine more than women, and nonwhites stigmatize more than whites. Unfortunately, there is little data about the sources of stigmatizing attitudes encountered by children. Anecdotally many adults with migraine recall their first stigmatizing experiences in childhood. Statements from their parents, teachers and to a lesser extent their friends are recalled as hurtful and impactful in their lives.
Advocacy is public support for a cause or policy and is necessary to reverse the effects of public stigma. Parents need to advocate for their children and teach their children to advocate for themselves. Advocacy begins by educating the child and their friends and siblings about migraine, its’ impacts and treatments. Then the parent advocate should consider what advocacy activities for their kids would be helpful in school, such as talking to their teachers, a 504 plan, or an individualized education plan (IEP). Efforts to educate children generically about migraine through classroom lesson plans and teaching materials may be helpful.
Successfully changing negative reactions toward a disease takes careful thought. This process, called reframing , requires that people with a disease, or their family members, make themselves visible, and mobilize. Successful efforts include: HIV, autism, breast cancer, and multiple sclerosis. For migraine, such efforts have not succeeded at a societal level because migraine re-branding has not mobilized the migraine community to act.
A more realistic goal is to reframe migraine for the child, the family, friends, and school. In children, there have been successful efforts to educate the community through art programs and through adolescent camps.
Minen developed, piloted, and tested the Headache and Arts Program. This 2-week Headache and Arts Program with lesson plans and art assignments for high school visual arts classes included an age-appropriate assessment to assess students’ knowledge of migraine and concussion. The program improved the learners’ knowledge, which they retained over 3 months. The use of a visual arts-based curriculum may be effective for migraine and concussion education among high school students.
As an outgrowth of clinical care, we developed the Miles for Migraine Youth Camp, a recurring 1-day event for adolescents with chronic headache and their parents. Migraine Camp was developed to provide expanded headache education, teach coping strategies for living with chronic pain, and encourage development of a supportive community for adolescents living with chronic headache disorders and their families. The creation and curriculum of the Camps at the University of California San Francisco and Children’s Hospital of Philadelphia are described in our manuscript, along with patient and caregiver feedback. Overall, feedback was positive. Teens reported feeling less isolated and more prepared to cope with headaches using new strategies. Both patients and caregivers consistently described benefit from connecting with others who experience similar challenges. The Migraine Camp teams at both institutions found it feasible to conduct the Camps 1–2 times per year using existing resources, but noted that to scale it to a more regular event additional administrative and/or volunteer support would be needed. In summary, the experience has been positive for patients, caregivers, and staff, and we hope that this manuscript can serve as a “how to” model for similar events at other institutions.
In the office setting, clinicians should make advocacy part of the treatment plan. Turning the patient’s self-image from migraine sufferer or victim, to migraine warrior can improve self-efficacy. Self-advocacy involves getting the accommodations that maximizes their ability to learn, or participate in other important activities, and educating schools as well as family and friends. In some cases, directly discussing stigma and self-stigma may be helpful in reducing negative self-talk and improving self-esteem ( Table 2 ).
| For health care providers | For caregivers/parents and kids |
|---|---|
| Turn patients and family members into migraine warriors | Learn how to become a migraine warrior |
| Reduce self-stigma | Reduce self-stigma through education and support groups |
| Advocacy in the community | Advocate at patient-participatory events |
| Self-advocacy | Join a support group and access education |
| Educate schools | Speak to school administrators, nurses, teachers, school board |
| Offer hope | Find like-minded support |
Related posts:
Stay updated, free articles. Join our Telegram channel
Full access? Get Clinical Tree
