Crystal's Migraine Motto: "Face the Pain, and Shed the Shame"
The Editorial Team at Migraine.com is highlighting people in the migraine and headache disorder community in a series of interviews. We talked to Crystal, a woman who has battled the pain, stigma, and misunderstandings of migraine the majority of her life.
Crystal's migraine story
Migraine started when I was young — 6 years old is my earliest memory, but I know that wasn’t my first. Migraine runs in my family, so it wasn’t unusual when I started getting occasional, severe, but short-lasting attacks as a child. However, mine persisted, and in addition to the occasional severe debilitating attacks, mild to moderate headaches and migraines became a daily occurrence when I was young.
Worsening attacks as I got older
Being only around 8 or so, I assumed it was normal not to feel good every day, so I didn’t speak up. As time passed, things only became worse, and when high school rolled around, the headaches and migraines became so noticeably severe (chronic migraines) that I could no longer hide. Since then, I have seen more doctors than how many years old I am (28), and after graduating from college, things really spiraled to an all-time low, migraine, of course, being the focal point.
Hiding out of misunderstanding
I kept much hidden growing up, and I did this out of shame, embarrassment, fear of appearing weak, and ultimately fear of being who I am. I am a person who has experienced and continues to experience the ugly, excruciating, debilitating, and painfully misunderstood migraines.
Honesty has been healing
I suppose it’s only natural to turn my back on this, but how much more does pain hurt when I conceal it? When I hide from it? Run from it? When I lie about it? With every lie I casually tossed - “I’m fine, just tired” — I wrapped myself in a blanket of hurt, mindfully separating myself from those around me. This lifestyle became so natural and instinctive that honesty and openness felt confusing and wrong. It has been quite a painful journey, and I am still on the road to recovery, but I am currently better than I have been in my entire life, and I feel so blessed to be where I am today.
Experiencing a full spectrum of misunderstanding
I have experienced the full spectrum of misunderstandings, judgments, questioning, and critiques regarding my experience with migraine. But they are all tied together by the same thread: an invalidation of my experience.
The pain of misunderstanding can sometimes feel worse
As others can attest, this can almost hurt worse than the piercing pain of migraine itself. Add in poor mental health, and I internalized the comments and dialogue around migraine and felt not only was my experience repeatedly invalid, but I, as a person, was invalid. I always felt well-loved, but I didn’t feel understood. The migraines may fade with time and land on some other unfortunate person, but much like a migraine attack itself, once a threshold is met, it is too late. I am shaped through and through by this disease.
The effect misunderstandings have had
With that being said, my responses have run the gamut-anger, frustration, sadness, desperate and disappointing attempts to “make people understand,” and the most common, the most familiar, the most harmful — a complete shutdown and withdrawal. Over time, this has stripped away a sense of belonging and added an isolating element to existence. A cycle of feared dread and disappointment turned to into a cycle of expected dread and disappointment. Rare was the time it changed. I met it with an uncomfortable sense of undeserving gratefulness. A sense of muteness had settled deep in my bones, and I could not step outside of my skin.
Knowledge only takes you so far
I don’t think there is anything I’ve wished people would know. Knowledge lays the groundwork for how the dialogue around migraine is shaped, but knowledge only takes you so far. I’ve spent years trying to educate others on migraines, and something is still missing. I can say the words “excruciating,” “debilitating,” “horrible,” but these words just hang in the air while the other party passively complies and utters a routine “I’m sorry” because what else can they really say?
Without empathy, nothing works
Something else is needed to bridge this gap, and I feel it is empathy. I came across this sentence in a newspaper: “Without empathy, nothing works.” So, I wish for sensitivity and openness. I wish for compassion and non-judgment. Most of all, I wish to be heard. I wish for the opportunity, time, and place to share, free of shame, free of stigma, and full of hope. What I wish for isn’t specific to migraine, and it rings true for struggles outside of migraine. We grind and grind against the hurt, but I think we all just want to be heard and accepted because I’m not sure how much healing can happen until we speak up and are heard.
Migraine is a unique disease
I think what makes migraine unique is that the disease itself isn’t unique (many people experience it, it’s not “rare”), yet the impact of migraine is unique compared to other health conditions I’ve dealt with. For something so debilitating, migraine sure gets treated and viewed as being no big deal.
Commonality drives dismissal
“I am not alone, yet I am lonely” — because how can we find solace when others deny or downplay the very thing that we are trying to escape from? I feel the commonality of migraine has disregarded the severity of it, and this element stands out to me when I take stock of my experiences. Rarity always sparks interest, and we gloss over the common experience, lumping “commonplace” and “meaningless” together faster than I can spit out “I’m fine, just tired.” It doesn't feel so special when we see it so often, and it doesn't feel so worthy of our attention when its effects appear minimal (i.e., it is not a terminal illness). Consequently, what doesn't feel significant won't get treated appropriately. Both the disease and the dialogue around the disease are complex and in need of attention. I don’t feel these problems run as deep as the other health issues I’ve faced, nor are they as impactful for me.
Advice for my younger self
It makes sense, and I guess it’s instinctive, to hide from pain, and of course, to run from it too. But if I could teach my younger self one lesson, it would be to “face the pain, and shed the shame” (which I am definitely making a theme in my life, starting now!). One of the biggest disservices I have done to myself is turn my back on the pain because when I did this, I turned my back on myself. And then, I couldn’t face myself and felt like "half-a-person," or so I call it. My face, the place of constant pain for a decade-plus, is a source of such shame, embarrassment, confusion, and fear. Migraine became me, and I became my own disease. Dr. Frank Vertosick said it best: “There is something very devilish about pain arising in the face and head. They strike us at the geometric center of our beings. Our consciousness resides, after all, within the confines of our skulls. A leg pain arrives in our consciousness telegraphed from some friendly but vaguely distant land, while the severe headache or face pain barges into the mind’s home like an unsavory intruder. When our head or face burns, we hurt, and in a very profound way”.
My dark room: