No longer ignored: Making herself and others heard

Erica Nicole Carrasco was in the middle of a severe migraine attack when she went to see her primary care doctor on Lackland Air Force Base in San Antonio, Texas, in 2013. She was sitting in a wheelchair, her blood pressure was low, and she was having trouble breathing.

“I don’t know why I went into the doctor,” she recalls. “But I was scared of the attacks, my hemiplegic migraine attacks were getting worse, and every new little thing scared the crap out of me.”

Hemiplegic migraine (HM), which is a rare type of migraine disorder, comes on abruptly and severely. For Erica, it causes mild to debilitating pain or weakness on the entire left side of the body. Attacks can look a lot like a stroke. She experiences non-epileptic seizures when her pain level reaches a certain point. She can have difficulty walking and speaking, and she has migraine with aura, which affects her vision. “That all happens within a few minutes,” she says. She can go a week with hardly any head or body pain, and then she could be bedridden for three days.

She went to see her new doctor, despite the fact that she had seen nearly a dozen doctors and specialists who couldn’t effectively treat her. This doctor, like all the others, seemed frustrated that she was there when he couldn’t help her, Erica says.

“He was talking to me like I was a soldier in basic training, and he was talking down to me,” she says. He said one thing that she still hasn’t forgotten: “He told me that I must be harboring some deep, dark, ugly secrets, because it’s manifesting as… my migraine attacks.”

The doctor started yelling at her and said she was ruining her husband’s career. She started crying so hard that she began to hyperventilate. “He was loud, and he treated me like a child,” she says. “I told my husband, ‘Get me out of here right now.’ And he got me and he wheeled me out.”

The doctor made her feel like it was her fault for being sick, she says, noting that she and her husband, Stephen, never reported the incident because her husband had a lower-ranking job in the military at the time.

Erica thinks the way the doctor treated her was influenced by sexism, but she doesn’t use that word to describe it. She struggles with whether what she experienced was the result of gender bias—or race. “I’m still trying to decide what kind of disparity that was, because I’m a woman, I’m Hispanic, low-income,” she says. “I just know that I never felt taken care of. Even the first time I saw him, it was just very cold.”

Regardless of why the doctor treated her the way he did, the experience isn’t an outlier for her. Doctors have often not believed her about her pain. They’ve made assumptions about what kind of care she can receive or afford because she’s on Medicaid, and she’s been mistreated in emergency rooms. All of these experiences have led to years of searching for the right support.

A long journey of not being believed

Around 2001, Erica saw another primary care doctor who was the first person to tell her what migraine was, but the doctor didn’t give her medical advice and blamed her attacks on stress. “Stress is everywhere. Stress is in marriage. Stress is with kids. Stress is in jobs… So I knew that was not the answer,” she says.

She’s also had many negative experiences in emergency rooms. A doctor at a hospital in her home state of Texas once labeled her a “marijuana abuser” because she had used CBD oil. She showed the hospital that she purchased the CBD legally, but they wouldn’t remove the label of “marijuana abuser.”

“I never used it again, because I was like, I can’t afford to have that on any of my medical records, because no one will take me seriously, and I already deal with that,” she says. “I’ve never been back to that emergency room again since then and that’s my hometown. I go to the next city to go to the emergency room if I have to, and that’s sad. I shouldn’t have to do that.”

Erica thinks part of why doctors haven’t believed her over the years is because her disease oscillates from manageable to debilitating. “I’m myself when I’m feeling well, and I’m a completely different person when I’m under attack,” she says. “So I can’t get anybody to believe that this is actually happening to me and not psychological.”

Erica also believes being a Mexican American, low-income woman places her “pretty low on the totem pole” of the social hierarchy in medicine. But she didn’t always recognize that. She said it wasn’t until the nationwide Black Lives Matter protests during the spring and summer of 2020 that she started looking back on her experiences.

She asked her husband if he thought she was treated poorly by doctors in part because she’s a woman and part of the Latinx community. He said yes, and that he sometimes felt like they were looked down on in doctor’s offices. “And I was just like, how did I not see that?” Erica says. “But I know why—because I was not feeling good. So I wasn’t recognizing it. It was not something I was paying attention to.”

That’s the hard part about bias and health disparities, Erica says: you often have to look out for them, and most times you don’t realize they’ve happened until months or years later. And part of that is due to socialization. Growing up, Erica was taught, “You’re Hispanic, don’t make waves, because you’re going to be treated a certain way,” she recalls. “And so I wouldn’t really speak up because I felt like I wouldn’t be as respectful… we’re kind of taught to just smile, and continue on and everyone will look past you—they won’t focus on you.”

Over time, she had to learn to leave that behind.

Becoming an advocate

Erica has been let go from three jobs in a row within her cybersecurity career as a result of her illness. “I have felt like I’ve lost everything,” she says.

Feeling doubted and invalidated by her providers only made matters worse.

When doctors can’t help you or won’t even believe you, “you start not to believe in yourself,” Erica says. “I was losing myself, I was becoming depressed… and then anxiety entered because of how I was treated in the emergency rooms.” She began to struggle with suicidal ideation, so her therapist encouraged her to keep a journal.

She started a blog, Achy Smile, in 2016 to talk about her migraine attacks and how she manages them. A year after she started the blog, a health care marketing company representing two pharmaceutical companies asked her to be a part of its migraine awareness campaign called #SpeakYourMigraine. The company flew her to New York City for a photo and video shoot. “And everything skyrocketed from there,” she says about her advocacy work.

She started volunteering more. She also was one of the founders of the Hemiplegic Migraine Foundation, a Facebook group, which is now named the International Hemiplegic Migraine Foundation. It provides private support groups for patients and caregivers and will post questions from people with HM who are looking for resources.

“Advocacy then became my purpose and it gave me something to do, because me and idle time are not good companions,” she says, laughing. When she goes to migraine events now, she’s treated like a “celebrity,” she says. “It’s an awkward feeling, and I’m like… but I don’t feel that way. So I’m just going to be myself, and then they’ll realize I’m a real person,” she laughs again.

Today, Erica lives in North Carolina and works with Chronic Migraine Awareness, Inc., doing marketing and graphic design. She also designs migraine and mental health awareness T-shirts that she sells on her website, and she started a clothing company with her sisters called Americana Sister. Her medical team now includes a headache specialist and a therapist who supports her and her advocacy efforts.

So though she was taught not to “make waves” growing up, that’s exactly what she does now. “With my advocacy, I realized that that’s making people focus on me, but that’s not a bad thing,” she says. She encourages people to look out for the signs of bias and health disparities. Often, the language someone uses will indicate if they’re talking down to you, or if you’re suffering a migraine attack that affects your speech, doctors might seem judgmental or frustrated.

“If we’re going to make real change in the world, as women, as Latina women, as anything that has been put down, then we have to recognize those things as they’re happening, not after they’ve happened,” she says. “And if we can bring it out, as it’s happened, [and] say, ‘No, this is not okay’ in that moment, that’s when change can happen.”
­— by Jo Yurcaba