The Give and Take of Self-Advocacy
I find myself met, again and again, with shallow characterizations about what migraine is (and is not) from people who’ve not experienced them. Some people think that migraines are ‘just headaches’, while others are unaware that migraine pain can manifest in places outside of the head and face. There are some people who have no idea that migraine can be debilitating, and others who don’t know that a cure for migraine does not exist---and that’s okay. Not knowing is okay.
Opportunity for learning
I don’t expect everyone who lives without migraine to know a lot about it, because as people live their own busy lives, they are consumed by all kinds of pertinent information that they must keep up with, and that doesn’t mean that they don’t care about migraine sufferers or disabilities that do not affect them. On the contrary, I think a lot of people who don’t know much about migraine triggers and symptoms would actually want to make their habits and environments more accessible and accommodating if they knew more. At least, this is the attitude I elect to take when I navigate situations in which someone unknowingly engages with me in a way that may trigger migraines for me. Lighting a scented candle, flashing bright lights, or burning fryer oil are actions that may spark conversation with someone who does not experience migraines about how those actions may affect me, but I do not fault them for not knowing beforehand that their actions may be harmful. Not having information is okay, because where there is a lack of information, there is an opportunity to learn, share and grow. Those opportunities have the capacity to help all involved and I tend to carry hope that simply having conversations about accessibility and accommodation will help those who may not understand to do so.
The power of conversation
For the past few months, I’ve been working out a couple of days per week at the university gym in my town. Recently, I was doing cardio on an elliptical machine, and a young college student who was on the machine beside me paused and sprayed a very potent, floral-y scented perfume on herself. I always thought that wearing perfume in a place where everyone is sweating and emitting all kinds of scents naturally seemed to go against some kind of unspoken gym etiquette, but something I hadn't realized previously is that it seems actually pretty common for folks to perfume themselves at the gym. I have seen it happen numerous times. Odd to me, but I am sure there are varied reasons as to why people use perfume, most obvious of which is to smell nice.
The spray entered my nose abrasively and triggered pain behind my eyes almost instantly, and then my asthma was triggered. GREAT, I thought. I had been in the middle of a pretty good workout and someone had, without thinking of any potential consequences of their actions, introduced into the air a substance which had the potential to make me very sick. I should mention that because of experiencing lifelong asthma and migraine, I am just now beginning to workout consistently in my mid twenties, something I never thought would be possible because of my comorbidities. Each day at the gym feels like I am doing something impossible, so I felt pretty defeated that I had been interrupted.
I stopped my workout to take my inhaler and wash my face in the bathroom, and then decided to head home because I knew that a migraine attack was plausible. I felt that my time had been robbed of me, and that this person had essentially taken away my agency. I was really upset, but I decided to talk to the student before I left. Partially because I was, if I am being honest, really mad. While I knew she probably had no idea and meant no harm to me, I still felt upset because I was not in control of my environment, and in a way, she was. I wished she had known beforehand what affect her actions might have had on others. I was sure if she only knew, she might think again before spraying something potent in a shared area, especially a place like a gym.
I found her still in the same spot once I’d returned from rinsing my face in the bathroom, so I went up to her at the elliptical and said ‘Excuse me’. She looked surprised and startled, but removed her headphones to listen.
‘Sorry to bother you, but I just wanted to let you know that I am asthmatic and migraine-prone, and the perfume you sprayed a while ago really triggered pain for me. I am having to cut my workout short...I know you didn’t mean anything by it but--”
“Oh my gosh, I am SO sorry!”--she interrupted. She looked mortified, but also very caught off guard and surprised. It was overwhelmingly clear that it had not even crossed her mind that there would be any kind of repercussion of her spraying her perfume whatsoever, let alone causing pain to someone else. She was overly apologetic and more than understanding. This situation showed that not only had she meant no harm, but as soon as she learned of my concern she was more than willing to adjust her actions to be more accomodating in the future. Not knowing was not the problem, and for that reason I do not take issue with those who do not know, even if it hurts, because there is room for learning. Conversation can be a powerful agent for making the world a better, more inclusive, and more accessible place.
Challenges to self-advocacy
In my experience, teachers, coworkers, and even doctors have all been guilty it seems of offering descriptions of migraine that really seem to miss the mark. Even those among our closest circles can offer less than knowledgeable descriptions on what migraine can potentially be, and those mis-characterizations can sting the most. Well meaning friends and family members, despite their best intentions, sometimes use language that serves invalidate our experiences and pain. There are certainly challenges to self-advocacy, and not every situation goes like the one I experienced at the gym. I have also had my share of disbelievers and skeptics who have refused the legitimacy of migraine and its symptoms because they ‘can’t see it’, and those situations can be disheartening and frustrating. I try to remember the times in which others have approached learning with openness and compassion to balance out the feeling of defeat that can come with trying to self-advocate.
With so much misinformation and mischaracterization of migraine floating around, it can be really, really frustrating to try to set the record straight, especially since migraine can and does manifest differently for each individual who experiences them: what is true for one migraine sufferer may not be for another. Symptoms, triggers, length of attack, and what helps to alleviate the pain, if anything, varies from quick-tempered the next.
I admit, too, that I can be quick tempered when I get frustrated or feel overwhelmed when trying to advocate for myself in the face of mis-information. Validating myself, remembering my value, being understanding of the other person’s perspective, and trying to be concise and clear when I am able to when relaying information about my own experience with migraines are just a few ways I try to alleviate some of the frustration that comes with self-advocacy.
What are some of the challenges you face when trying to advocate for yourself, whether it be with friends, family, of healthcare professionals? Do you have advice for how to advocate for yourself?
Have you taken our Migraine In America Survey yet?