Coping

I am: Identity and chronic illness

The emotional weight of migraine has been especially heavy for me in the last month and, really, in the last year. The morphing and unrelenting stress has ratcheted up my migraine attack frequency and the attacks often include depression-like symptoms. My thoughts have swirled around how small my life feels and how much unrealized potential migraine has left me with.

It was the perfect time to watch In & Of Itself, a film adaptation of an off-Broadway show that’s now available on Hulu. This description from Linda Holmes on NPR is better than any summary I could write: “It’s about seeing people and being seen by them, and about how your own narrative of who you are — I AM a novelist, I AM a gamechanger — collides with stories about who you are that you didn’t get to write.”

“I AM” in the quote refers to cards that audience members choose at the start of the show. They are arranged on a wall and include an array of identities a person could align with: tourist, organizer, leader, mother, life of the party, entomologist…

As the identities came up throughout the show, I couldn’t help but wonder which I would choose. Truth-teller, resilient, and authentic were top of mind. But then I thought about what identities others would choose for me. Would sick be at the top of the list? It feels these days like that’s all anyone can see of me. Or is that illness feels like it dominates my life and because it’s all that I see of myself, I’m projecting that onto everyone around me?

I know that if I asked my loved ones to describe me, sick wouldn’t be the first thing anyone said. It would be present, but as an addendum. They’d say I’m a kind, driven optimist whose ambition has been constrained by migraine. Or that I’m so resilient and determined that I’ve learned how to live as well as possible despite the many challenges of chronic migraine. I know this because people have told me so. And yet.

Even though I do believe them, the pall of migraine covers everything right now. I am not migraine. I do not want to be defined by migraine. I felt like I had a good grasp on the difference between migraine and me when I wrote about this very topic on Migraine.com in Is migraine part of my identity? Yet, here I am, just a few months later, feeling flattened by migraine once again.

In & Of Itself reminded me that I am a mass of beliefs, thoughts, concepts, identities. Who others perceive me to be is shaped by their beliefs, thoughts, concepts, identities. No one is only one piece of their lives. No one is truly who others perceive them to be.

I cannot only be migraine even when it feels like it is all that I am. I cannot tell my story without all the pieces of me speaking up. I wouldn’t be sharing my experience with migraine so openly if I weren’t a truth-teller. I wouldn’t feel so connected to my authenticity through words if I weren’t a writer. I wouldn’t have found contentment (most of the time) in a life with chronic migraine if I weren’t so driven (that trait that I grieve being unable to apply to the career I wasn’t able to have).

My therapist would say “I am” is the most important part of the cards. What follows doesn’t matter. We are all worthy of love and belonging simply because we are. That’s where I’m trying to put my thoughts today instead of being bogged down by the details.

I am.

I am.

I am.

Photo by Kristina Tripkovic on Unsplash
Coping, Treatment

Free online course in migraine management begins Jan. 16

Imagine reducing the severity of your migraine symptoms and/or the intensity of your distress during a migraine attack without medication. Now imagine learning the skills to do so in a free course that you can take from the comfort of your own home.

The Resources for Migraine Management course, offered by the Danielle Byron Henry Migraine Foundation, can help you do exactly that. The free e-course begins this Saturday, January 16. (Registration link: Resources for Migraine Management virtual course registration)

What the Course Teaches

A 10-session online course, Resources for Migraine Management teaches a variety of biobehavioral treatments for migraine management. Each session will teach different methods for managing migraine symptoms and the associated stress and anxiety.

The goals of the program are to:

  • Teach relaxation techniques
  • Teach pain management strategies
  • Learn how to better cope with distressing thoughts and emotions
  • Build resources for greater resilience

About the Teacher

Dan Kaufman, PhD, a research assistant professor in neurology at the University of Utah School of Medicine, teaches the course. A scientist might seem an unusual choice to teach the course, but the story of how he got here is persuasive. In his scientific research on migraine, Dr. Kaufman became curious about the experience of people living with the condition. As he spoke with people to learn about their perspectives, he was compelled to offer help that was more direct than scientific research. He began training in biobehavioral therapies for migraine, which led to him opening a private practice to teach these therapies and, ultimately, to offer this course.

Firsthand Experiences

One woman who participated in last year’s class recently reported that, for the first time in years, she has been migraine-free for months and that her anxiety is virtually gone. While these results aren’t typical, it’s a stunning example of the potential effectiveness of biobehavioral techniques.

While I didn’t take this particular course, I have learned many of these techniques over the years. After the events of 2020 stirred up my stress-triggered migraine attacks, these methods helped me return to my migraine baseline and cope more effectively. They have also been invaluable in teaching me to cope with the onslaught of migraine. Living with chronic migraine is still hard and frustrating, but it is so much easier than before I had these strategies.

Course Logistics

The next class begins on Saturday, January 16. Sessions are on Zoom on the second and fourth Saturday of each month from 1 to 3 p.m. MST. Each one teaches you new skills that build on previous sessions. Classes include opportunities to practice the techniques and get feedback from the instructor, so attendance at the scheduled times is preferred. However, if you’re unable to attend a session live, recorded sessions will available so you can catch up.

Registration

Here’s the link to register: Resources for Migraine Management virtual course registration.

Photo by Oliver Augustijn on Unsplash
Coping, Triggers

When Self-Care isn’t Enough

“I’m doing everything I normally do for self-care and it still isn’t enough.” I’ve said some variation of this countless times in the last month.

My self-care game is normally really good. Through much trial and error, I’ve figured out what works for me and typically prioritize self-care. Even in this wretched year, I’ve managed to do both the self-care that requires effort (like daily walks, regular workouts, and a healthy diet—as long as migraine doesn’t interfere) and the smaller things that I can incorporate into everyday life. That kept me on a relatively even keel. Until about a month ago.

With the election and its aftermath and the surge in COVID cases, I’ve been a bundle of stress. Despite continuing all my self-care activities, it didn’t feel like enough. In fact, sometimes the self-care itself was stressful.

When I told my therapist that all I was doing wasn’t enough and that my self-care was adding stress, she steered me toward radical acceptance. That is, accepting what is for what it is. No matter how distressing it is, no matter how much I want things to be different, to remind myself that what is happening is happening and all the angsting in the world can’t change it. It’s such a simple concept and an incredibly difficult task.

Thinking about human behavior and puzzling through why people do the things they do is a fundamental part of who I am. And it has been working against me. Trying to understand people’s rationalizations and lack of critical thinking when it comes to politics and COVID hasn’t helped me understand the world in a constructive way. Instead, it has broken my heart.

So I’m practicing setting aside a part of what makes me who I am. Just for a while. Because I can’t radically accept what is happening if my mind is in a constant knot, trying to figure out why people are making decisions that I cannot fathom. And trying to fathom those decisions? I’m also working on not doing that.

Acceptance has been critical for me to cope with chronic migraine. And I’ve learned to apply it to many other situations in my life. But I hadn’t thought to apply it to 2020 even though it has the hallmarks of a situation where acceptance is essential—major, life-changing problems that I have almost no control over. (Note the “almost” in the previous sentence. Despite accepting that I have migraine, I never stopped trying to find relief. The same is true for social and political problems. Acceptance and working toward change can coexist.)

In the 10 days since I began working on radical acceptance of the current state of America, I’m doing better. My stress is lower, my angst is less, and even my migraine attacks are more typical. I’m still angry and sad, but I’m not overwhelmed. Right now, that feels like a win.

Coping

How are you holding up?

We’re six-ish months into everyday life during a pandemic, racial tension is boiling over, and we’re in the midst of a horrible election cycle. It’s an understatement to say that life is hard right now. I’ve heard from countless people with headache disorders and other chronic illnesses who are experiencing an increase in symptoms. Depression is creeping up for many. Even my healthy loved ones are feeling frayed.

I found myself thinking of you all as I listened to Brené Brown’s latest podcast episode, On My Mind: RBG, Surge Capacity, and Play as an Energy Source. She talked about the frustration and despair that’s rampant right now. She referenced an article I read last month and found really helpful for understanding my current stressors, Your ‘Surge Capacity’ Is Depleted — It’s Why You Feel Awful. In addition to explaining the “why,” which I always love, the article has good coping tips.

So how are you doing? How do you feel physically? Emotionally? What coping skills are you using to get through this difficult time? I understand if you don’t want to share in the comments (though you can post anonymously), but you’re welcome to send me an email if you’d like to catch me up.

If you’re curious, I’m doing OK. I’m heartbroken by the number of people who have died because of how the country is handling COVID. I’m disheartened and worried about race relations in the US (while at the same time have some hope for change). I’m anxious about the election and sad about Ruth Bader Ginsburg’s death. And yet, I’m holding up fairly well. Here are the high points:

  • The isolation is surprisingly fine for me. I think that’s because I’ve been housebound before, so I’ve already developed coping skills to manage it. Also, last time I believed it would never end, while this time I think it will.
  • When the weather and migraine attacks allow, I’m getting outside for walks. That’s a huge benefit to my mental health.
  • While my migraine attacks are worse than they’ve been for a few years, I think they’re improving now that monsoon season is over.
  • My husband is my favorite person to spend time with and we’re having fun at home together. We’re able to be in separate spaces during the day, so I don’t even have to listen to him on Zoom at work (which would definitely stress me out).
  • My mom and I are working on an oral history project. We’re having great conversations every week and I’m learning a lot about her and our family.
  • I have regular video chat dates with friends to do puzzles (not puzzles with pieces—more like logic puzzles). I love both the people and the activity.
  • I’m doing more advocacy work and getting excited about writing again. It feels great!

Coping

Being stressed over migraine is a migraine trigger

I never used to think of stress as a migraine trigger for me, but I’ve discovered in the last few years that my migraine frequency does increase in times of extreme stress. Unsurprisingly, right now qualifies as highly stressful and migraine kicked my butt for weeks this spring.

I tried all my usual tactics—I made sure my sleep and diet were in good shape, stopped reading the news, made exercise a priority, and committed to lots of relaxation. Nothing made a dent in my attacks. They got so bad that I had to take a leave of absence from TheraSpecs and stopped my advocacy work. Still no change.

After three weeks of frustration, I had an epiphany—maybe the stress of the increased migraine attacks was itself triggering more migraine attacks. While I had pulled out all the self-care stops, I had continued to obsess over my triggers and be frustrated every time an attack landed me on the couch for the day.

So all I had to do was stop being stressed! Aiming for that goal is usually a recipe for increasing my stress levels, but this time I managed to let go. I decided to drop all the worry and, for some reason, it actually worked. By the next day, I started to feel better. Within two days, I could definitively say that my attacks we less frequent and less severe, plus I felt better between attacks than I had in months.

I asked psychologist Dawn Buse, PhD, for her thoughts on the stress of migraine as a migraine trigger. She pointed out that it’s impossible to tease out which came first, the chicken or the egg, and explained more about the relationship between stress and migraine. She said:

“The relationship between stress and migraine has many different forms which can change from person to person, and over time and life phases for an individual. Stressful events or periods can contribute to triggering an attack. This can occur during a period of high stress or after the stress level has reduced, which is called the “let-down” effect. Long periods of stress (such as a personally difficult time or the global pandemic) can be associated with increased frequency of attacks. And some stressors such as childhood maltreatment are associated with the onset of migraine disease. Conversely, stress is also a consequence of living with migraine. Migraine can have significant negative impact on all important aspects of life and negatively impact relationships, careers, finances, academics, family, friendships and fun, just to name a few areas-—which can be very stressful.”

Dr. Buse also gave some information on managing stress, which I’ll include in an upcoming Migraine.com article on this same topic. Most notably, she shared a quote from Jon Kabat-Zinn that spoke to my recent experience: “You can’t stop the waves, but you can learn to surf.” My attempt to stop the waves was not only ineffective, it made me feel like I was drowning. When I attempted to surf, my migraine attacks improved within a day.

I’ve been trying to surf for a couple weeks now and am doing well enough that I’ve spent this week on advocacy work and will head back to (remote work at) TheraSpecs next week. I’m nervous, but excited to get back to a life beyond my own health.

I’ve been thinking of you all and hope you’re doing as well as possible. Life is so weird right now.

hand reaching up through surf
Photo by Nikko Macaspac via Unsplash