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The Quiet Dignity of Living With Migraine

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I know so much of your pain. As I type these words, I want to ensure you I am coming from a place of deep respect and endless compassion for you and your struggle with chronic migraine. I could, too, detail my bleak journey, the downward spiral that began about three years ago, and landed me in my current condition: a debilitating combination between chronic migraine and chronic daily headache. I could share the myriad of medications and treatments I’ve tried with zero results. I could mourn the loss of my teaching career and the loss of my freedom: both financial and otherwise. Like many of you, I have so many things I could cry over (and trust me, I do). And there will always be a good time to cry — those moments when it all becomes too much, when you are completely overwhelmed by pain, and you don’t even know who you are anymore. But once you shed that final tear, there also comes a time to take a deep breath and try to move forward.

Once I am done counting my losses, I wonder about the things I have gained since chronic pain took charge. I think of those mountains I’ve summited, those level-10 pain, completely bed-ridden (except to vomit) days. I think of those hours when I wondered how I could experience such a severe level of physical agony and not in fact, be literally dying. I think of those moments when I genuinely believed I could simply not go on… (And yet, here I am, going on.) I know with great certainty that those bad days will return in the near future, and that my pain is the tide, ebbing and flowing reliably and relentlessly. I am fully aware that the relatively low pain allowing me to currently write this is a very temporary condition, and at any moment now, an excruciating migraine can strike.

When I express to others this ruthless nature of my chronic migraines, I often hear, “That is just no way to live.” And really, what a funny thing to say, because here I am, living (and proving you wrong at the exact moment you are telling me this). If I analyze this statement deeply enough, it’s kind of offensive, like my way of living is somehow less worthy than a healthy person’s way of living. I really ought to say in response, “Maybe you shouldn’t pity me. Maybe you should admire me.” Every day, whether I wake up with unbearable pain or just a dull ache, I do the best that I can. And yes, many days “the best that I can” means lying right back down in bed for the entire day, just waiting for the pain pass. But damn it, I am doing it. And isn’t there a special type of dignity in my way of living?

The struggle we face is one highly unique in nature, and vastly misunderstood. To get at this point, let’s think of an entirely different plight. In college, I took an African American literature class. Often, we’d analyze various poems, plays, and essays under the context of “the veil,” a concept coined by W.E.B Du Bois in “The Souls of Black Folk.” The veil symbolizes the barrier between white America and the oppressed African American population, particularly during the 19th and early 20th centuries (when Du Bois lived). Now, anyone who has ever worn a veil over her face can still clearly see her outside surroundings. In other words, African Americans can fully see the beliefs and attitudes of white Americans, including white America’s perception of them (“I see how you see me”). However, a literal veil obscures the face of the person wearing it. Therefore, while African Americans can see and understand white Americans, white Americans cannot see nor understand African Americans (“I see how you see me, but you don’t really see me.”) This is, of course, due to deep-rooted prejudice, and abuse against African Americans (its own huge topic within itself).

The point of “the veil” in our class was to recognize that even with the most thorough and well-thought-out observations and analyses we made about African American literature, we were really just guessing. Nineteenth century African Americans had their own unique culture, their own specific struggles, their own whole world completely separate from the white America in which they relentlessly sought acceptance and understanding. As a 21st century white female, I am obviously on the other side of that veil. And no matter how hard I squint, I am never going to clearly see their world — not because I don’t want to, but because I am simply not a part of it… Are you beginning to see the connection to chronic migraines?

Now before I move forward, let’s make one thing clear: I am not at all attempting to side-by-side compare the African American plight to our struggle with chronic migraines. First off, these are obviously vastly different circumstances. Also, like I just said, I am on the other side of that veil. While trying to understand their culture and burdens is a very worthy pursuit, I fully acknowledge I am never going to totally “get it,” so I am not going to pretend that I do.

However, I do believe “the veil” is a handy concept that can also apply to those of us in chronic pain. One aspect that makes the veil especially relevant to us is that chronic migraine is an invisible illness. A person without migraine literally cannot see our pain, and this fact opens the door to many more struggles, from doctors not taking us seriously to our own feelings of emotional isolation. As much as this genuinely sucks, the beautiful thing is that these obstacles do not stop us. I suppose I can’t speak on behalf of the entire migraine community, but every person with migraines that I hear or read from is fiercely unrelenting. We are still researching, sharing, and trying countless treatment options. We still have hope. We still comfort each other in online migraine communities. And we still write and speak candidly and boldly about our illness. Even though we recognize that from inside the veil, we will never fully be understood by the rest of the population, we never stop trying to have our voice heard.

I am not sure if we will ever emerge fully from beneath our veil of pain to the other side. I am not sure if our pain will ever get better or if we will ever gain total understanding from the outside community. Maybe people on the other side will continue to see us as overly dramatic or psychosomatic. As much as we try to sway their minds and hearts, we often have as little control over others’ perceptions as we do over our migraines. Yet, here is the good news: we do have control over who want to be and what we want to do from our side of the veil. We can still choose to trade our “migraine victim” card in for the “migraine warrior” one. Perhaps, as ironic as it sounds, this prison of pain has granted us a unique type of freedom: the freedom to have hope. The freedom to keep trying. The freedom to, in spite of all despair, keep going.

Getty photo by Grape_vein

Originally published: June 1, 2018
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