Migraine Guilt

If you live with migraine, you KNOW the guilt of not doing enough, not being enough, or of holding people around you back.

Today I’d like to share a personal story with you about how migraine made me feel like the worst girlfriend ever, but also how to work through migraine guilt so you don’t need to feel like “the worst” anymore.

Migraine has bad timing!

I’m celebrating my 9-year dating anniversary with my high school sweetheart this month! That is almost a decade. Whew.

One of our most recent pics together at a lake getaway!

We attended different universities and spent over half of our relationship so far long-distance. Finally, a few years ago, we were able to move in together, and I was incredibly excited. I had waited ages for this step, and had large expectations.

  • I wanted to explore the city, try different restaurants and bars each weekend.
  • I imagined cooking or baking together and introducing Dan to yummy healthy meals.
  • I had ideas for how we could create weekly routines, clean the apartment, and adjust to our new lives.
  • He was completing a Master’s degree, I had my first big-girl job, it looked so new, shiny, and fun!

My head had different plans for me, though.

In the years we spent long-distance, my migraine attacks had been climbing in frequency and severity. By the time we moved in together, I was experiencing almost daily pain and was hanging on to “normal” life by a thread.

All I seemed able to do was go to work, lay on the couch until dinner, then go to bed. For over a year. It was terrible. In my mind, I was disappointing my partner. I was boring, never up for anything fun, unable to pull my weight in chores or meal preparation, just not worth hanging around with.

My brain kept telling me… “He waited 6 years for this?? He deserves better.”

The guilt for not being the “perfect” girlfriend was so strong, but he always assured me it didn’t bother him, and that we’d make it work.

  • We discovered simpler date nights I could enjoy even with pain, like takeout + television or playing board games.
  • He learned how to prepare meals and desserts with me on the sidelines.
  • We worked together to manage my migraine disease. I began to experiment with lifestyle changes, which he kept me accountable with!

The guilt is something that I still wrestle with any time my attacks start becoming more frequent, but I remind myself that this illness isn’t my fault.

I need you to heart this:

Migraine is not your fault.

Never let anyone treat you as if it is.

Also! This sounds cliché, but it’s true…

Someone who loves you will still love you if you’re sick. You’re worthy of love.

One of our (rare) outings in the midst of my near-daily pain.

No, really, migraine has bad timing.

You want to hear who is most likely to be burdened with chronic migraine?

According to the American Migraine Foundation…

  • 85% of chronic migraine sufferers are women
  • Migraine is most common between the ages of 18 and 44

Very often, migraine strikes in young adult women in the most “productive” years of our lives. We often have school, careers, families, and countless other responsibilities. 

If this is a new or worsening disease and you’re feeling too overwhelmed to “deal” with it, that’s no surprise!

How to communicate about migraine

People who haven’t experienced a migraine attack may have a very hard time understanding what you’re going through. Communication is the key to success.

Speaking to your loved ones about your illness can seem scary and overwhelming, but is such an important part of living with migraine. Through this, you can gain understanding from your support system and manage expectations.

Here is my strategy to start communicating with your loved ones:

  1. I advise you plan this on a low/no pain day. Migraine attacks can cause brain fog and make you feel very confused.
  2. Just break the ice!
    • Migraine shouldn’t be an illusive, unspoken mystery, but starting the conversation is the hardest part.
    • Let your loved one know that you want to open a dialogue with them about your illness. Tell them you love them, trust them, and want them to be on your team.
  3. Educate and bust common migraine myths.
    • There’s still a lot of misconceptions around migraine, like it being a bad headache or something that disappears with painkillers.
    • Take the time to dive into a few details. Things you could discuss include:
      1. Symptoms! This really helps people begin to distinguish between migraine attacks and headaches.
      2. Triggers. Attacks aren’t a punishment for something you did “wrong”, but there are things that could be helpful for your loved ones to know. For example, my family knows strong perfume or cologne is a no-go.
      3. Treatments! While an ibuprofen may take care of your friend’s aches and pains, migraine can be a lot more challenging to treat. (And in many cases requires a daily prevention medication.)
      4. Causes. This is different from triggers! The cause of your migraine disease is usually genetic and something you have no control over.
  4. Ask and answer questions.
    • See if they have any questions about migraine, and assure them that you’re always open to continuing the conversation.
    • Ask your own questions, if you have any. Maybe inquire what they think about making more migraine-friendly plans or changes you’d be interested in making (like my family and the strong scents!).
  5. Discuss your “tasks” and “tells”
    • I don’t like answering questions about my migraine disease when I don’t feel well, but it’s important for loved ones to know what to look for. Many people will also want actionable tasks to take so they are able to support and help you.
    • Tells:
      1. My strategy has been to have a visual “tell” like wearing sunglasses or an ice pack. My loved ones recognize these items as a sign that I’m struggling.
      2. With my significant other, things are a little different. He has a lot of exposure to my disease, so I can quickly tell him “I don’t feel good today” or “I feel off” and he immediately knows what’s up.
    • Tasks:
      1. If it’s a bad flare, I’ll often lay down on the couch and let my loved one bring me medication, water, and/or reliefs. I’m still getting used to accepting help, but this is a good place to start.
      2. You could request they bring you a simple meal, complete an errand for you, or whatever else helps bring relief.

When your migraine is understood by those around you, there’s a lot less room for guilt.

Gain time back

While a major part of moving past the guilt of missed time with migraine is acceptance and communication…

Preventing attacks is a great way to truly get your time back!

There are some things you can start NOW to start preventing migraine attacks.

  • Start a migraine diary
    • Click here to read an article ALL about migraine tracking.
  • Speak to your physician about your options for prevention medication, including:
  • Consider starting a supplement targeted to help migraine, like:
    • Vitamin B2, CoQ10, Magnesium, etc.
  • Make changes to lifestyle, for example:
    • Mindfulness activities (meditation, breathing exercises, etc.)
    • Exercise regularly, starting slow (walking, yoga, chair yoga, etc.)
    • Nurture yourself, setting boundaries, gaining acceptance and empowerment
    • Diet with gentle nutrition, eating balanced and nutrient-dense meals

When prevention doesn’t work

Migraine is a challenging illness, requiring a lot of trial-and-error before finding what works for you. So what can you do in the meantime?

I’d like to introduce you to the “spoon theory”.

The creator of this theory, Christine Miserandino, was dining out with a friend who asked what it’s really like to live with chronic illness and limited energy.

Miserandino grabbed 12 spoons off the tables and explained that the spoons are “spent” each day after completing activities that use energy, like showering, cleaning, or driving to work.

The limitation on the spoons proved to be a major challenge and obstacle. The friend ran out of spoons quickly and got discouraged after trying to reorganize the way they spent the day’s spoons.

Try playing along with this exercise with a loved one!

  • Grab 12 spoons (or any item!)
  • Walk through a typical day with them, spending spoons for activities⠀⠀⠀⠀⠀⠀⠀⠀

Here’s a rough guide at how to many spoons activities cost:

  • 1 – getting out of bed, getting dressed, watching tv
  • 2 – bathing, hair & makeup, reading or studying
  • 3 – preparing & eating meal, cleaning, socializing
  • 4 – shopping, exercising, work or school⠀⠀⠀⠀

This will illuminate how challenging it is to be “productive” with chronic illness. Try re-strategizing the day to spend your spoons differently.

You can use this exercise in your daily life. For migraine flares and fatigued days, “save” your spoons focus on accomplishing the tasks most important to you.

Moving forward

I hope that through this article, you now have an action plan to cope with “migraine guilt”. To recap:

  • Migraine isn’t your fault. You didn’t ask for this illness, there’s nothing for you to feel guilty about! (Now, accepting this… Easier said than done, I know.)
  • Develop a communication game-plan to manage expectations and clear misconceptions with your loved ones.
  • Work towards migraine attack prevention through convention medication therapies and complementary therapies like the MEND Method.
  • Utilize chronic illness strategies like “saving your spoons” to not miss important moments.

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