Why It’s Important for Caregivers to Show Their Support

Caregiving: Three Ways I Show My Support

My son, Nate, was 10 years old when I was initiated into the complicated world of migraine disease. He collapsed on a baseball field in the middle of an inning—vomiting, weak and unable to speak or open his eyes. He was diagnosed the following week with migraine disease. When I think back on it now, that day on the baseball field wasn’t the start of Nate’s migraine journey. His brain was wired for migraine all along—we just hadn’t realized it yet.

Burden: Carrying What You Can

As a parent, caretaking in times of sickness is part of the job. But as the days turn into months and years, it morphs into a way of life and becomes a sort of calling. On the really bad days, I spend the day encouraging Nate to take sips of water and small bites of food. I spot him when he goes up and downstairs, and help him make lists of schoolwork he missed. On better days, I’ll pack a lunch of whatever he thinks he can stomach and take him into school late, reminding him of the assignments to turn in and the teachers to check in with. I have painstakingly kept a migraine journal every day for three and a half years. In the beginning, he did most of this himself. He stayed on top of his own treatment and managed school, sports and friendships. It wasn’t long before keeping up became too unmanageable along with fighting migraine.

So I took over. Caretaking means carrying some of Nate’s other burdens or moving things out of the way so he can do the hard work of fighting migraine. Some days he needs more, sometimes less. I do what it takes on that day so he can focus on the one thing I can’t do: fight the disease. This often means doing more for Nate than would be considered age-appropriate under “normal” circumstances. But these aren’t normal circumstances, and I unapologetically do whatever is necessary so Nate can have a chance of having a better quality of life.

Advocacy: Running Interference Against an Invisible Disease

Migraine is invisible. It doesn’t show up on images or in blood work. It hides from public view, under blankets in cool, dark rooms. Migraine leaves its footprint in the events you miss and the school assignments marked “missing” in the grade book.

When you’re at war with migraine, you’re in two grueling fights: one against the disease, and one against stigma. Nate advocates for himself and communicates what life is like living with migraine, but let’s face it—cynicism is real.

Caregivers can run interference. They can frame the conversation using science and facts to legitimize a highly marginalized disease. We can say “migraine disease” instead of “headaches”. We can say “attacks” or “cycles” rather than “a migraine.” We can talk about migraine as a spectrum, helping people understand that, while some days are better than others, the disease is always present for some people. Sometimes well-intentioned people will ask me, “What causes Nate’s headaches?” I have learned to say, “He has a neurological disease. Head pain is just one of many symptoms.” CHAMP has a very helpful Headache & Migraine Disease Language and Image Guide on its website, which I refer to frequently.

In every interaction I have—whether it’s family, friends, teachers, administrators, healthcare providers—I make sure that I use validating language that chips away at stigma. I’m constantly working on this skill. The Migraine World Summit has been a key resource for me to learn the many facets of this complex disease, and I feel more confident having knowledge on my side when I talk about migraine.

During a Section 504 accommodations meeting one day in August of 2017, we handed out a packet that used positive migraine language to explain to school staff what they should expect when Nate started school in the fall. Nate was there too and had written a personal narrative describing his migraine experience. Some teachers read the packet and asked questions, and one started to cry reading Nate’s narrative. Those individuals went on to be Nate’s biggest supporters and became his caregivers, too.

Victories: Your Shared Story

With migraine, some days are dark and miserable. It can feel like we’ll never win the war against a disease that does what it wants, when it wants, with complete disregard for the life Nate is trying to live. We can’t opt-out of migraine, but we can celebrate small victories.

Nate’s slide into chronic migraine started in 2017, and by 2019 he was intractable. He was losing 80 full or partial days to migraine each school year, and we were working incredibly hard to break up the unrelenting migraine cycles. His lowest point came in the spring of 2019 when weeks of excruciating pain and debilitating symptoms landed him in the emergency department twice for IV medications. Shortly thereafter, he was admitted for a DHE protocol that lasted three days.

At the middle school honors night in June, Nate received his third-year honor pin along with a medallion for three consecutive years of making the honor roll. It was a very emotional evening for us, fresh off the hospital stay and deep into another migraine cycle. We all felt fragile. One great thing about caregiving is walking alongside the person and sharing in whatever wins you can get. Your story is their story because you wrote it together. To Nate, the honor medallion represented hard work and good grades. For me, it represented victory in one of many battles against migraine.

Nate is finishing up his freshman year of high school. Even in the midst of a pandemic, upheaval in every aspect of his life, and limited access to his medical team, the scale is tipping towards more good days than bad. One year ago, any feeling of hope was too foreign to even consider. Yet here we are, doing hard things and sometimes getting a win. If you’re a caregiver, please stand up and take a victory lap—you’ve earned it. When you do, the first one on their feet and cheering the loudest will be the one you’ve been caring for all along.

 

Kristen Schreck

 

by Kristin Schreck
Migraine World Summit

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