10 Things I Wish People Knew About My Migraine Condition
Key takeaways:
Sarah Shaw is a 32-year-old, Black, LGBTQ+ woman in New Jersey, who is living with a migraine condition.
She used to think her condition was something that only middle-aged white women had.
She says representation and connecting with healthcare providers who understand her experience are vital.
When Sarah Shaw first started having recurring head and stomach pain, the idea that she might be having migraines never crossed her mind.
The pain began one crisp, fall evening in 2013, when she was a recent college graduate working in event planning, and she was out with her partner and friends. As they waited to enter a Halloween corn maze, a strong shooting pain hit her. Her first thought was that she and her friends had been served some bad food earlier. But her friends felt fine, so she ruled out food poisoning.
When the pain and fatigue finally lifted 2 days later, she remembers thinking, “That was weird.” And then pain, nausea, and light sensitivity struck her another three or four times by the end of that month.
She finally got a migraine diagnosis after an arduous year and a half of doctor visits and evaluations.
The first doctors she saw suggested that the demands of her job, which she loved, were to blame. But that theory didn’t help resolve her symptoms. Then, one day, when she was searching the aisles of a drug store for something to bring her relief, she spotted the “ask a pharmacist” sign. The pharmacist listened to her and suggested the possibility of migraine attacks.
“Once I had the word ‘migraine,’ I was able to begin connecting the dots and advocating for myself,” Sarah says, adding that that proved to be necessary. “Even after that, it was still difficult to be taken seriously.”
Learning to live with chronic pain
Today, 32-year-old Sarah is the BIPOC (Black, Indigeneous, and people of color) patient advocate and community outreach manager at the Global Healthy Living Foundation, an advocacy group for people living with chronic conditions. A lot of the work she does focuses on migraine, chronic pain, and helping others with their journeys.
She also leans on her partner, Tara, for support.
“I got really, really lucky having a partner who has been so incredibly supportive. Not everyone is as empathetic to those living with chronic pain,” Sarah says.
Here are 10 things Sarah would like people to know about living with a migraine condition.
1. The causes of migraine are not entirely clear
Researchers are still trying to understand the complexities of migraine conditions. A large number of potential, common triggers have been established. Food triggers — such as salty, processed foods and aged cheeses — can be eliminated pretty easily from most diets. Other triggers are hard, if not impossible, to avoid. For example, menstruation is a trigger for some people. Stress is a trigger for others.
When a doctor gave Sarah a checklist of possible contributing factors early in the evaluation process, she remembers thinking: “What am I supposed to do about this? This just sounds like life.”
2. A migraine is so much more than head pain
A migraine can include four phases: prodrome, aura, the headache, and postdrome. Each phase has a wide range of potential symptoms.
These symptoms include:
Constipation
Brain fog
Food cravings
Mood changes
Neck stiffness
Stomach distress
Light sensitivity
Head pain
Nausea
Vomiting
Confusion
3. There is no cure
The goal of some migraine treatments is prevention. The goal of others is to relieve symptomatic pain and discomfort, like nausea. But there’s no cure for migraine at this time.
4. Migraine attacks recur
While some people experience only a few episodes in their lifetime, many others have recurrent and episodic or chronic migraine attacks. Chronic migraine involves having symptoms 15 or more days per month. Managing chronic migraine means managing chronic pain.
5. The migraine experience varies
The experience of having migraine differs from person to person. It can also vary from episode to episode, both in degree and kind, for the same person.
People’s experiences with migraine are also different because of quality of care. People who lack access to medical care are more likely to experience more disabling migraine attacks, Sarah says.
When Sarah was between jobs, she had to decide whether to pay her rent or high insurance bills, so she lost access to healthcare. At this point, she’s been employed and had good insurance that covers her costly treatments for a long time. But she’s keenly aware that others can’t afford their treatments.
6. Having a migraine condition complicates planning
Some migraine attacks might be manageable enough to work through. Accommodations like keeping lights low and making a room cool and quiet can help. But other migraine attacks might be completely debilitating and require a visit to the hospital.
“I tell people, ‘I’m not unreliable. My migraine condition is,’” Sarah says.
Even when a person with a migraine condition does their best to minimize exposure to triggers, a migraine can strike. Sarah takes preventive medication, yet an attack can occur without warning. This can make planning, even for important events, anxiety-inducing.
7. Migraine may not look like what you expect
When Sarah was growing up, she didn’t see herself as a person who would have this kind of chronic condition.
“I had this image of a middle-aged white woman, like in the movies, with her hand on her head, sitting in the dark,” she says. “My reality is me: a young Black woman sitting at a desk and typing when I have a migraine. Sometimes. Sometimes, I’m curled over in bed.”
8. Migraine myths are out there
Even today, migraine myths persist, Sarah says. People are often made to feel as if they’ve somehow caused their migraine condition, she says. And she notices how movies and advertising reinforce these negative messages.
“In an older movie — I think it was ‘Ferris Bueller’s Day Off’ — there’s a scene where he’s, like, ‘Can I go home? I have a migraine.’ And he was using it to get out of school,” she says. “And that really stuck with me after I was diagnosed. I was, like, ‘How rude. Why would they have him say that?’”
She’s “grateful to work with people who are open, empathic and understanding,” Sarah says. “It’s done wonders not just for my migraine but for my mental health.”
9. Many people with chronic pain are reluctant to admit it
Many people won’t share that they have a migraine condition, even when they’re mid-attack, Sarah says. This stops them from admitting they’re in pain or seeking help.
Besides the general stigma around migraine, another reason is that American culture favors people pushing through and toughing things out, Sarah says.
“Especially as women, especially as Black women,” she says, “it’s often not socially acceptable to talk about pain that we’re dealing with.”
She notes that it’s hard to break out of these cycles. But, for her, opening up to trusted people like her partner and her manager at work has been a positive experience.
10. Representation is important
Today, tennis star Serena Williams appears in advertisements for migraine medication. That represents progress, Sarah says.
“I’m going to be completely honest: When I first got migraine, I thought I was the only Black person out there with it, because I did not see myself or anyone that looked like me at events or in waiting rooms,” she says.
Representation can help when it comes to providers, too, Sarah says. In the past, she sometimes had the sense that doctors partly suspected her, a young Black woman, of seeking prescription pain relievers.
“Which I was,” she says, “but to treat my symptoms of migraine, not to abuse.”
Sarah’s current physician is also a Black queer woman, who, she says, really listens to her. And no longer needing to “prove” herself has had a huge, positive impact on her care and quality of life.
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