When living with migraine, you get used to having to “tough it out.” Migraine doesn’t care about your schedule or what plans you might have — when an attack hits, it takes over.
For many of us living with migraine, this means that we often have to make a decision: Power through the pain, or take cover until it passes. The choice isn’t as easy as it may seem, and sometimes it isn’t really a choice at all.
Why we “tough it out”
Asking for and receiving support with migraine can be difficult and complicated. You feel guilty or even ashamed that you can’t always take on certain responsibilities because of your condition. And you often feel judged by others who don’t understand what you’re going through.
A few years ago, I went to work one day (like many days) with a migraine. Within minutes of arriving at my job, I vomited three times. When I told my supervisor why I needed to go home, his response was, “Well, I have a headache today, and I’m still here.”
Because of his lack of understanding, my supervisor essentially shamed me for having a medical condition. This shame forced me to stay at work that day — and many more days beyond that — despite the intense pain I was experiencing.
Although this is just one example, it’s surprisingly common. The combination of shame, guilt, and judgment often push people with chronic illness to power through without asking for the help and support they need.
The idea that migraine is “just a headache” adds to the stigma, shame, and guilt we, and others living with chronic illness, experience. As illustrated by that day at work years ago, stigma is often what drives us to feel like we have to tough it out in the first place. But is it really worth it?
Use your spoons wisely
The spoon theory is a great tool to help illustrate how people living with a chronic condition use their energy.
Each person gets a certain number of “spoons” every day, and each spoon represents the amount of energy they have and use for each task in life: getting out of bed, making breakfast, commuting, etc. Someone living with migraine uses more spoons on a single task than the average healthy person. For example, getting out of bed may require one spoon (or fewer) for an average person, while someone living with migraine may use three for the same task. Each action needs a spoon (or several), and spoons can’t be replaced throughout the day.
The dangers of using all your spoons
The dangerous part of using up all your spoons (or energy) in a day is that it steals from the next day's supply. Depending on the person, toughing it out and employing too many spoons can cause a downward spiral for the next day or week.
For those of us living with migraine, that means it can take even longer to recover from an attack.
Pushing too hard can also put you and others at risk. At my old job, I powered through on days when a migraine attack made it difficult to make decisions. Because of the work environment, I felt like migraine wasn’t a good enough reason to take time away from work. My work suffered, and so did I.
Delaying care or ignoring serious symptoms not only prolongs pain — for some people, it can lead to life-threatening complications. Although rare, migraine attacks may put certain people at an increased risk for stroke. You should seek medical care right away if you experience:
- aura that lasts longer than an hour
- severe symptoms that aren’t helped by medication
- new or different symptoms
It’s not always an option to stay home, so when you’re forced to venture out, be sure to ration your spoons carefully, and make sure you have a plan in place. In those cases, the best self-care is prevention, and knowing your limits.
Recently, my daughter had a school performance that I couldn’t miss. My migraine was extreme, but I needed to be there for her. When you’re a parent with migraine, you miss out on a lot, and this was one time I couldn’t hang back.
I prepared my bag with medications, essential oils, sunglasses, a scarf, and other items to battle my symptoms and triggers. My husband brought me snacks and water — low blood sugar and dehydration are two major triggers for me — and drove us to the event. He also helped me get in and find a seat where I could make an inconspicuous exit and avoid the crowd if needed.
I was at the event physically, but not mentally. Luckily, my husband and other parents took lots of photos and videos. The next day, when I was feeling a bit better, we reviewed the performance, and I was able to enjoy it in a different way. The open communication with and support from my loved ones enabled me to be present as much as I could be.
Knowing when to say “enough”
Sometimes you have to make tough decisions in order to prioritise your health and well-being. In my case, I eventually left that job in order to take better care of myself. I realised that the environment was toxic and making both my mental and physical health much worse. It wasn’t an easy choice, but it was the right one for me.
The bottom line: Migraine is a neurological disorder that should be taken seriously, period. Proceed with caution — listen to your body and make your health a priority.
Ischemic stroke subtypes and migraine with visual aura in the ARIC study (2016) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5207003/
The spoon theory written by Christine Miserandino. (n.d.). https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
NPS-IE-NP-00037 September 2020