‘We’re the Migraine Family’

By Ashley Hattle

At 13, Jibreel Dieng has known the pain of migraine attacks for almost half his life.

His older brother, Noah, 21, knows that pain too. And so does their mother, Kristin.

“We’re the migraine family. It’s almost like a rite of passage,” Noah says. “It felt like us against the world.”

Kristin Dieng, 47, lives with chronic migraine, complex post-traumatic stress disorder (C-PTSD), attention deficit hyperactivity disorder (ADHD), anxiety, and depression. She and her husband Oumar, who live about a half hour from Minneapolis, have three boys. All three experience migraine attacks, but for the oldest, Ismaael, the attacks are episodic and have never become chronic.

Kristin’s attacks became nonstop and debilitating after Jibreel was born, and the pain snowballed from there.

“I went to bed for five years, almost. At that time, the best I could do was walk my son to the end of the driveway when the bus picked him up,” Kristin says. “No activities, no sports. All these things the kids wanted to do were thrown out the window.”

Noah developed chronic migraine around fourth grade. The radiating feeling felt like he “wanted to vomit from [his] brain,” he recalls.

He often felt that his migraine attacks weren’t taken seriously at school. One year, he broke his wrist and didn’t even realize it, because his head pain was so much worse. Kids asked to sign his cast, but to Noah, this injury—the pain that was acknowledged—was nothing compared to the pain he felt every day from migraine attacks.

Now, in his early 20s, Noah’s attacks are few and far between, but the experience of growing up with multiple chronic health conditions has left lasting scars. “I am who I am, and I can’t separate [migraine disease] from who I am,” Noah shares. “It has held me back in some places and led to a different path in others.”

The youngest member of the Dieng family is Jibreel, a young teen trying to learn and play with his peers while living with chronic migraine since the age of seven. “[Migraine is] basically a knife that’s consistent. Like the pain is always there,” Jibreel explains. “I can’t pull it out.”

NUMEROUS BARRIERS FACED AT SCHOOL

Noah missed a lot of foundational knowledge in middle school due to his absences, when Kristin was struggling with her own migraine attacks the most. Looking back, Kristin says, Noah should have had an individualized education program (IEP) that would have provided support and accommodations to help him keep up academically with his peers.

Later, Jibreel’s middle school failed to acknowledge the severity of his medical condition, recommending a plan that only addressed the need for medication without accommodating absences.

Then Jibreel lost the ability to walk. His brain was so overwhelmed by severe pain that it shut off communication to his leg, a condition known as functional neurological disorder.

His pediatric migraine specialist refused to write a note to excuse his absences. (Noah had faced the same issue a decade earlier.) “[The doctor’s] philosophy was that you never miss school no matter how bad your migraine is,” Kristin says.

Later, Jibreel’s school counselor refused to meet with Kristin to discuss his IEP, failing to return phone calls or emails and delaying paperwork—a repeated issue for which the school is now being investigated, Kristin shares.

The family decided to switch to a new school district that offered an online program. “It had its own complications, but for the first time, the new school district was willing to work with us,” Kristin says. As the school year progressed, Jibreel’s migraine attacks worsened, and he had to go from a full-time class load to half-time, later requiring home-based tutoring.

Things began looking brighter for Jibreel in the summer of 2022 after he attended the U.S. Pain Foundation’s Pediatric Pain Warrior Family Summer Camp, followed by a pediatric pain program through the Cleveland Clinic that improved his mobility and functionality.

He switched to in-person classes, but the long drives triggered migraine attacks in both Jibreel and Kristin. The Dieng family felt they had no choice but to sell their home in a bad housing market in order to find a place where their son could access quality education despite his conditions.

FINANCIAL HURDLES LIMIT ACCESS TO CARE

For the Diengs, few treatments work to mitigate migraine attacks, and the ones that do, they have discovered, are rarely adequately covered by their insurance. Physical therapy and craniosacral therapy allowed Kristin to continue working, but when the money ran out to cover the treatments, her pain returned with a vengeance. The Diengs paid $5,000 out of pocket for Botox treatments that worsened Kristin’s pain. Eventually the family had to file for bankruptcy, and then lost their home due to medical bills.

“There came a point where we had to choose between food or medicine,” Kristin shares. “We were forced to put groceries on credit cards. We couldn’t afford our mortgage. We had to pay the medical bills because we had to have our prescriptions.”

The family, to this day, cobbles treatments together and plays “financial Jenga” to manage the annual medical debt they accrue, she says. They don’t qualify for government assistance because of their income, but those qualifications don’t consider the impact of health care expenses.

“When it’s at that point where you’re like, ‘We don’t know how we’re going to pay for this,’ your kids notice,” Noah says. “Just knowing that I have this appointment, but we don’t know how we’re going to pay for it, started to weigh on me a lot. There’s a psychological aspect to the financial disparity, which itself becomes a problem.”

COMPOUNDING DISPARITIES

The Dieng family is multi-racial and practices the Muslim faith. Kristin used to wear a hijab (a head covering often worn by Muslim women). She struggled to get job interviews, and despite the fact that she was born in Minnesota, people assumed she didn’t speak English. She says she forgot what kindness felt like, and she made the difficult decision to remove the garment to better advocate for herself and her family.

“Jibreel twice got called the n-word on the bus while he was in elementary school,” Kristin shares. “The school listened because I was a white woman calling and getting upset. In many ways, my whiteness has allowed me to fight for them in a way that [wouldn’t work] if it were just my husband.” Kristin’s husband, Oumar, is originally from Senegal, West Africa.

Noah shares that growing up in a multi-racial family with health and financial difficulties meant they were never dealing with only one challenge at a time.

“All the disparities compound themselves,” he says. “Anything that involves a child with chronic illness, it seems like it snowballs very quickly in every aspect of your life.”

ADVICE FOR OTHER FAMILIES

Through advocacy organizations such as U.S. Pain Foundation’s Pediatric Pain Warrior program, the Diengs have met many other families with similar stories. Their advice?

Kristin shares, “Be prepared for a marathon. It’s going to be a long path, but don’t waste the good days. I go out of my way to spend time with Jibreel on good days and communicate a lot. A lot of parents forget you need to stop and ask your children how they feel… what they want and what they think.”

When Jibreel meets other kids with similar struggles, he tells them, “It’s going to suck every single day, but as you get older and older, you’re going to get used to it. You’ll loosen up on how it’s feeling all the time.”

Finally, Noah shares, “Talk to your kid. You forget your kid is part of the equation. Protecting and taking care of your kid becomes an objective, and you forget that they’re a person and have thoughts and emotions surrounding the pain. Talk, listen, and listen again.”