How Living with Migraine Has Taught Me to Embrace Disappointment

Canceling plans due to migraine can be upsetting, especially when it means letting others down. Here’s how I replaced my feelings of guilt with self-compassion.

Living with migraine, like many other invisible illnesses, can come with a laundry list of peculiarities. No two people with migraine have the exact same experiences with the condition. However, something that many of us living with migraine can relate to is the feeling of guilt that comes from having to cancel plans at the last minute, taking breaks, or asking for flexibility due to migraine.

As a recovering perfectionist, living with migraine and anxiety can be exhausting for many reasons. Aside from a general fear of getting a migraine or anxiety attack, there’s also the fear of the aftermath. For me, this translates to the fear of missing out.

My FOMO includes my own fear of missing out as well as the fear that I’m letting someone else down, or worse, disappointing them.

One reason I find disappointment to be so difficult to deal with is that it often comes with feelings of failure or inadequacy. In many respects, I already deal with these feelings every day simply by living with migraine. It’s not uncommon for those of us with migraine to feel like we’ve let ourselves or others down or that we’re not good enough.

It’s important to remember though that disappointment in a situation is not a reflection of our worth as a person. Reminding yourself of this in the moment is often easier said than done.

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Reframing my guilt

This past year I’ve been on a journey to reframe my guilt and reclaim the value of listening to my body, even when this means having to disappoint others at times. Living with migraine is already hard enough; why should we also have to struggle mentally and emotionally too?

My journey started by reflecting on why I experience so much fear of disappointing others. Here are some of the reasons I came up with:

• I’m afraid of making mistakes.
• I don’t want to be seen as unreliable or flaky.
• I struggle with how much I want to do versus how much I can take on.
• I worry people will get mad at me.
• I get anxious about feeling stuck or not in control.

These fears are not unique to my experience. These fears, and others, are common for folks living with invisible and/or chronic illnesses. There’s a lot we can learn by sharing our experiences and empowering one another.

Listening to my body

Listening to my body can be difficult at times, especially when it’s not doing what I want it to. While I have gotten much better at this, I still often have the instinct to ignore what my body is telling me, hoping (unrealistically) that the pain will just go away.

Last spring, I was navigating months of rampant migraine attacks. This was before I knew how to manage migraine and I did a terrible job of listening to my body.

One day stands out in particular. Over the course of the morning and afternoon, I noticed a slowly worsening migraine attack. However, because I had big plans that evening, I actively ignored all the warning signs my body was trying to send me.

Because I didn’t pause and honor my body, the pain only got worse.

I felt overwhelmed and stressed, but I decided to push through it and head out to my evening commitments anyway. To make matters words, I was driving through a terrible snowstorm.

My symptoms worsened, and I had to throw up in the car as we pulled up to the restaurant. My husband drove me back home to rest, and I had to abandon the birthday party I was looking forward to attending. That was the first disappointment of the evening. When we got home, I realized there was no way I’d be able to fulfill my plans to babysit my niece that night. That was disappointment number two.

So, what happened? Did all my catastrophic fears of not being able to attend come to life? Not at all. My husband promised my father-in-law that we’d reschedule to celebrate his birthday and then went to babysit without me. Luckily, my niece fell asleep quickly and stayed asleep the remainder of the night — leaving my husband with no big “hands-on” duties to handle alone.

Situations like this one taught me that while the idea of disappointing others sounds awful and sometimes unbearable, there are reasons why it’s perfectly acceptable, and even healthy, to disappoint others if need be. Here are three lessons I’ve learned while embracing disappointment.

Disappointing others means we’re human — and teaches others the same

People-pleasing is not healthy and learning to live with the emotions that come with making mistakes or disappointing someone is great practice for creating healthy habits. Having to sometimes “drop the ball” creates realistic and fair expectations about the world and our ability to do it all, regardless of whether you live with migraine.

The people who matter will understand — if not now, in the future

You can still be mindful and empathetic as you disappoint others. The people who mean the most will understand when you can’t be there for every little thing. If someone doesn’t understand or want to understand, this speaks more about them than your “mistake.”

Another reason why disappointing others serves as a great teaching moment: you can learn more about the people in your life and what you expect from them. If someone cannot grant you grace for having to cancel plans or reschedule due to a migraine attack, you may want to rethink your boundaries with them (as opposed to blaming yourself).

We may care more than the person we are “disappointing”

This reason is personally my favorite because it teaches us to recognize that we are fearful of something that may not even be true. While we’re busy ruminating about creating an inconvenience or letting someone down, there’s also the possibility that the person might not even notice!

Our tunnel vision and past trauma can make us intensify our fears about disappointing others. Like in my story, when I thought of my disappointment as the end of the world, the people I was worried about disappointing weren’t upset or concerned at all.

I remember waking up in the middle of the night after my migraine attack passed and seeing a text from my sister-in-law. She expressed that I shouldn’t worry about it and that she was so busy herself that she didn’t even see my text apologizing.

Sometimes we are much harder on ourselves than the people we think we are disappointing.

What should we do instead?

When we do have to “disappoint” others, there are things we can do instead of beating ourselves up.

First, it’s always appropriate to apologize for hurting or disappointing someone, even if we didn’t intend to do so. However, be sure you’re not apologizing for your decision to honor yourself and what your body needs.

Self-compassion involves treating yourself with kindness and understanding and recognizing that you’re doing the best you can. Self-compassion also means reminding yourself that doing the best you can do is enough.

Next, try flipping the script with reverse empathy. If a friend had to cancel last-minute plans with you because they weren’t feeling well, would you give them a rough time or get angry?

Most likely, you would be supportive of their decision to cancel and respect that they are taking care of themselves. Why wouldn’t they extend the same compassion to you? Don’t let your fear make you assume the worst in people. They can be more understanding than you think.

Another point that is really crucial is to remember that disappointment doesn’t have to define us.

It can often feel like living with migraine — and all the “fun” parts that come with the disease — define us, but that is just not true. We are more than the sum of our disappointments and migraine attacks.

We can also embrace disappointment by turning our focus to what we can control. Instead of getting caught up in feelings of helplessness and powerlessness, we can focus on our attitudes and our actions, like sending messages of appreciation to loved ones or expressing how much you look forward to rescheduling the plans for a later date.

The bottom line

Disappointment is an inevitable part of life, but it doesn’t have to hold us back. By reframing our thinking, focusing on what we can control, and seeking support, we can learn to embrace disappointment and use it as a tool for growth and learning.

Remember that disappointment is not a reflection of your worth and that you have the power to move forward.

Lastly, it’s important to seek support during these difficult episodes. Whether it’s a friend, a therapist, or someone in the migraine community, speaking with others can help us better process our feelings and make us feel less alone.

We are all in this together.