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Learning to Say No: Setting Boundaries When Living with Migraine

Reading time | 6 mins

I’ve lived with constant pain for over five years. As a result, I’ve had to work incredibly hard to maintain my life during this time. This means that I do everything I possibly can to see my friends, to further my career, and focus on relationships that matter amid my unrelenting pain.

That said, balancing a career, a social life, and constant pain is often impossible. I’ve learned that I can’t always say yes to everything — even if I want to. My body just can’t take it. So, sometimes I have to say “no” so that I can stay afloat.

Saying no to things doesn’t always feel great. It often means passing on experiences or opportunities, and sometimes, even letting down the people you care about.

But living with a chronic illness means that you have to prioritize your health and well-being first. If I try to do too much, I’ll pay for it later.

Saying no can be hard at first, but over time I’ve learned a few ways to set boundaries with friends, family, and even at work without alienating people or maxing myself out.

Saying “no” to friends

This past fall I published my memoir, “10: A Memoir of Migraine Survival,” and it was no easy task.

The amount of work that went into researching and writing it — not to mention the anxiety that resulted from sharing my most vulnerable self with the world — challenged me in more ways than I could have anticipated. The experience also triggered a lot of migraine pain.

For a four-month period (both before and after the book came out), I had to say “no” to any and all social activities.

My migraine pain makes it hard to handle so much at any given time. Managing chronic migraine is hard enough on its own — add a book launch to the equation and there’s zero room for anything “extra.”

How I coped: In this case, I simply said “no” to invites and did my best to explain why. If they still didn’t understand, I usually stopped making plans with those people. Having to turn down social activities to this extent gave me great insight into who in my life really matters.

Saying “no” to relationships

I see a lot of value in finding love and a life partner. That said, dating and opening yourself up to finding someone special takes a lot of work.

Messaging with potential partners, going on dates, and being “on” during that time requires a lot of energy — energy that someone in constant pain simply doesn’t have available.

Today, I’m in a strong and special relationship, but for years I just had to say “no” to dating.

I was too sick to handle anything more than my day job and my pain. My capacity to deal with getting ready for a night out, spending time in loud bars, and being sociable was minimal. Dating would have sapped too much energy and made my pain worse.

How I coped: During moments when my pain was more manageable, I would try my best to put myself out there. If I saw a slight bit of room to push through my pain and go on a date, I would.

I also gave myself permission to let that particular ball drop without being especially hard on myself.

I could have wallowed during the time that I was single, but I’m proud of myself for accepting that it was something I couldn’t handle at that time. My pain was too severe for anything other than what was absolutely necessary.  

Saying “no” to events

Nothing makes me sadder than when I feel like I’m missing out on life. Unfortunately, my migraine has forced me to miss out on a lot of experiences that I’ll never get back. I’ve missed countless dinners with friends, parties, special occasions, and family vacations.

I will never forget the one year that I brought about 40 friends together to celebrate my birthday and then had to leave 20 minutes into the party because of a migraine attack. I was physically incapable of staying (even the cab ride home proved challenging).

That night, I had no choice – the pain said “no” for me. I hated the feeling that my migraine negatively affected my friends’ night. Can you imagine showing up to a friend’s birthday party only for the guest of honor to bail?

How I coped: After years of experience, I’ve learned to avoid scheduling events with big groups. I’m not well enough to be the one person that people depend on for the night.

Instead, I focus on smaller gatherings and one-on-one dinner dates. That way, should I have to cancel, I know that I’m dealing with people who understand my illness and the situation at hand.

Saying “no” to travel

Traveling while in pain is hard, and often impossible for me — which is especially difficult because I love to get out and see new places.

I still make an effort to travel when I am feeling healthy enough. I know that it will almost always trigger more pain, but it’s harder for me to keep my life on pause and wait for my pain to magically disappear before booking my next trip.

Just this past year I had a family vacation planned to visit an island off of South Carolina. I was stoked for the trip and couldn’t wait to relax and enjoy some warm weather with the people who matter most in my life.

My bag was packed, and I was about to walk out the door when the worst migraine that I have ever experienced hit. I couldn’t move. Even grabbing the phone to call my mom and tell her that I couldn’t join felt impossible.

Aside from missing my flight and losing the money that I put into the vacation, I remained unmoving in my bed for the next four days as my packed suitcase sat at the foot of my bed.

How I coped: Saying “no” never gets any easier, even when it’s out of your control. In this instance, I accepted that I couldn’t have changed the situation and forgave myself for missing out on the life experience. There would be more trips in my future.

Saying “no” at work

I pride myself on being a “yes” and “I can do anything” person at work, but my migraine has forced me to adjust both my roles and day-to-day workload.

For years my career required near constant travel, sometimes visiting three cities in a given week. While I loved my job and my career trajectory at the time, the travel became impossible with my relentless pain. I physically couldn’t manage to keep the job that I’d worked so hard for.

How I coped: I left the job because I couldn’t keep up with the workload and travel given the limitations of my illness.

I also made sure that my next job, while still being the same field of work, required no travel. I knew that I had limits on what I could do. I had to accept that I couldn’t handle that role any longer if I wanted to stay afloat.

The good news

Although saying “no” can feel incredibly defeating, I know that’s just something I have to deal with while I battle chronic pain.

The good news is that it’s shown me who truly understands my pain, and it’s taught me that I need to be strategic with how I expend my energy. There’s only so much I can do, so I have to make sure that I am only spending my time doing what will improve my life and bring me joy.

And sometimes, I have to find acceptance within myself when something just isn’t in the cards.

For more information on how to manage migraine, reach out to your doctor or healthcare team. 

NPS-US-NP-00470 SEPTEMBER 2019