Cara Zelas was 17 years old when she experienced her first migraine. Well, at that time, she didn’t know she was dealing with a migraine. The throbbing sensation hit right as she was about to take an exam, so it could have easily been a result of too much studying or stress. She pushed through, and the pain eventually subsided.
It wasn’t until a few years later that the throbbing returned — this time, more frequently and more intense than before. Cara’s busy life as an educator, author and founder of the Big World of Little Dude was her motivation for “pushing forward” through her persistent head pain.
“I just remember being in bed in absolute pain and not knowing what to do,” Cara shared on an episode of Talking Head Pain, a podcast from the Global Healthy Living Foundation (GHLF) that explores the challenges, hopes, and triumphs of people living with migraine and other chronic head pain conditions.
For years, Cara said she “suffered through” the pain and just assumed this was her new normal. It wasn’t until a grueling flight — almost 15 years after her first migraine — that Cara realized her pain was a problem that needed medical attention.
“We were on a plane from Sydney [Australia] to Los Angeles,” Cara, now a 41-year-old mother of two and early childhood education thought-leader, recalled on the podcast. “I had zero medication to take, and it was just getting worse and worse. . . I was in so much pain, my head was just throbbing uncontrollably [and] I was feeling extremely nauseous. I couldn’t stop throwing up.”
Fortunately, Cara was traveling with her husband who helped her get through that scary attack and, as important, recognize that she needed a different treatment approach to control her migraine. Cara’s husband Seth Ginsberg happens to know a thing or two about advocating for better care for chronic illness. Seth is the co-founder of GHLF, a nonprofit organization whose mission is to provide support, education, research, and advocacy for people with chronic illness and their loved ones.
Of course, Seth knew a lot about self-advocating for quality health care. After all, he started CreakyJoints — a patient community for people with arthritis, which is part of GHLF — more than two decades ago as a result of his experience navigating the health care system after being diagnosed with spondyloarthropathy at age 13.
But Seth would soon learn that being a caregiver to someone with a chronic illness comes with a unique set of challenges and experiences that are different from managing your own chronic disease.
His first realization may seem obvious in hindsight: You can’t support someone when you don’t know the extent of what they’re dealing with. And in many cases, this may be because your loved one doesn’t recognize or acknowledge it either.
When Seth and Cara first met and began dating in 2009, he didn’t even know she had migraine. Over time, though, her condition started to occasionally interfere with aspects of their life as a couple.
“There were times when we had been invited out, and Cara would decline,” Seth shared on Talking Head Pain. Because he didn’t know about her migraine, “I truly thought it was a function of being anti-social.” (It wasn’t.)
“When we had to cancel plans with another couple — for the third time — we basically had a very honest heart-to-heart,” Cara tells CreakyJoints. “That was helpful for him and for me.”
Since that conversation in which Cara first shared with Seth that she gets occasional migraine attacks, they’ve spent more than a decade navigating life as a couple living with their own chronic illnesses.
For Seth, a big part of that journey has involved adjusting his perspective from that of a person with chronic illness to that of a caregiver for someone else with a chronic illness. Being a caregiver is so much more than the logistical aspects of, say, taking someone to doctor appointments or reminding them to take their medication. It starts from an emotional place: providing unconditional support and commitment so your loved one knows you’re always there for them on and on their side.
“Migraine is a team game,” Seth said on Talking Head Pain. “The person suffering from the migraine is one part of the team, but the person supporting that person, the partner, is also a part of the team and has to play a really active role.”
If you have a loved one with migraine — or any chronic condition — here are some of Seth’s tips for playing a more active caregiver role.
Listen to Cara and Seth’s episode of Talking Head Pain here.
1. Learn the basics
When Cara first told Seth about her condition, he recalled being “happy, in a sense, to understand that it has a name, it has a diagnosis, and, theoretically, a prognosis.” This would kickstart Seth’s journey to learning more about migraine symptoms, causes, and treatments, which would allow him to take better care of Cara when her head pain struck.
“Understanding the mechanics and the details related to the health condition is a form of empathy and speaks to genuine interest in caring about a loved one’s health,” Seth says. “As the caregiver, you don’t become the expert, but you can equip yourself with more specifics.”
This education comes in two basic forms, and both are very important: what you can learn about the condition from trusted health information sources and what you can learn about your loved one’s personal experience with the condition. Remember: Just because you read something on Google doesn’t mean that it necessarily applies to your loved one.
2. Don’t be afraid to get personal
Depending on your relationship — say, if you’re newly dating, as Seth and Cara were — you may hesitate to “pry” or ask overly personal questions about your loved one’s condition. Maybe you feel silly asking them about things that seem like they should have obvious answers. You might worry your loved one will think you’re offering unsolicited advice. But as long as your concern is coming from an authentic place of wanting to support and help, chances are your loved one will welcome your questions. Make sure they know you’re not trying to “fix” them, but just trying to learn more so you can be more helpful and empathetic.
Use the information you read online as a jumping-off point to ask your partner, family member, or friend questions about what they’re going through. For example: “What does a migraine attack feel like for you?” or “What helps you feel better when you first feel symptoms coming on?”
3. Communicate, communicate, communicate
Although it took a while for Cara to tell Seth about having migraine, once her condition was out in the open, they’ve made clear communication a priority. This has helped them develop a routine for what each of them can do when her migraine strikes.
“Now that we have a kind of an understanding between each other to be very open and candid, [the condition] is a lot more matter of fact,” Seth said on Talking Head Pain, adding that Cara can tell him if she feels a migraine coming on, without fear or guilt, and Seth knows exactly what to do when that happens.
“I would prefer not to have migraine, but I guess the positive is the support and communication that has developed because of it,” Cara said on Talking Head Pain.
4. Let your loved one take the lead
“It’s important to support your partner [in] how they want to go about solving it,” Cara shared on Talking Head Pain. “You may be on different pages, but just go with how the person suffering from the migraine wants to handle it.”
For Cara, that often means lying down in a quiet, dark space to sleep it off. And Seth is more than happy to oblige. “I do anything I can to help out and support so she can do everything that she can to feel better as soon as possible,” Seth said.
Letting your loved one take the lead also means finding the balance between advocating for your loved one’s health and allowing them to have autonomy over their health. Seth admits that walking this line can be challenging at times.
“It’s not always easy to be ‘excluded’ from medical appointments or health care touchpoints, because I want to do anything I can to help,” he says. “But at the same time, I respect Cara for being independent and an individual who is entitled to privacy.”
5. Encourage them to keep seeking a treatment plan that works
Many people with chronic illnesses take a “grin and bear it” approach to pain, even as it starts to negatively impact their quality of life. It’s common to acclimate to a “new normal” where living with pain becomes accepted or it becomes difficult to imagine life without the burden of a condition’s symptoms.
As a caregiver, you can help encourage your loved one not to settle for feeling unwell. You witness firsthand how their condition is impacting their ability to do their daily routine, work, be social, be present for their children, and can help them see that their current treatment plan may not be working well enough.
While there may not be a cure that magically makes pain disappear, there are likely other treatment options available — including medications and lifestyle changes — that your loved one hasn’t tried yet. Being a caregiver often means being the concerned nudge to help someone take action.
“Try what the doctor recommends, as soon as possible. Holding out to see if it will get better by itself is basically the worst thing to do, especially when there are appropriate therapeutic options that a doctor recommends,” Seth says. “This isn’t a test of strength, it’s a journey with a chronic condition that requires deliberate action — on the part of the patient and the caregiver.”
6. Help them get through roadblocks to their care
Spending hours on the phone with the insurance company isn’t pleasant for anyone, but it can be downright impossible if you’re in the middle of a migraine attack or have debilitating pain or fatigue that makes it hard to get out of bed.
Managing a chronic illness means more interactions with all facets of the health care system — scheduling doctor appointments, calling the pharmacy, fighting with the insurance company to get treatment covered — while at the same time, you have physical and mental limitations that make those interactions challenging.
As a caregiver, one of your critical roles is to help your loved one feel like they are not alone while dealing with these hurdles that can get in the way of their accessing care.
“Fight for every possible component of care — access to specialists, diagnostics, medications, therapies, etc. — possible,” Seth tells CreakyJoints. “Never leaving anything on the table for an insurance company to deny for their own financial benefit.”
There are many ways you can help your loved one navigate health care hurdles, but a few common examples include:
- Prepare for doctor visits in advance by helping your loved one brainstorm questions and concerns
- Attend health care provider visits with your loved one and take notes
- Stay on hold with the insurance company and take notes for documentation during phone calls
- Keep medical files and insurance information updated and organized
- Research specialists and treatment options
“Something I think about is the role everyone can play in dealing with the insurance companies, or an employer, or any health care-related stakeholders who are really important to the equation, and with whom you can be really successful, or without whom or against you’ve got real challenges,” Seth said on Talking Head Pain. “It’s an arm-in-arm walk through the process, but nobody should go it alone if they don’t have to.”
Listen to Our New Podcast Talking Head Pain
If you have pain because of migraine or other headache disorders, chances are you’ve felt alone, misunderstood, and frustrated about how to manage your symptoms and get others to grasp what you’re going through. Our new podcast shares the stories, challenges, and successes of other people living with migraine and headache so you can learn how they’re coping and get support. Learn more and listen here.
