Making The Invisible Visible [365 Days of Migraine: Day 17]

In 1998, when I got my fifth tattoo – actually my fourth AND fifth, I got them at the same time – my dad said I might “have a hard time finding a husband,” and my mom developed a theory. Her theory had to do with my migraines, and how my new passion for getting tattooed might relate to them, considering the amount of pain both involve.

At that time, I hadn’t considered that there might be a correlation. I was getting tattooed because I loved doing it, I loved the resulting permanent art on my skin. I even enjoyed the pain, and still do, because it is different pain. It is pain I control, pain I pay for. Pain that leaves behind a visible, beautiful mark, which I have envisioned and designed. I consider my tattoos a road map of my life, a record of my experiences, my own hieroglyphics.

It’s true that it is difficult being afflicted with an “invisible” illness, by which I mean there is no obvious outward sign of my daily pain. There are small signs, of course. A sunken, inward look to my eyes; pale, sallow skin. A hesitation, a tiredness. Lack of sparkle. But no wheelchair, no disfigurement. It does make it hard to communicate just how crippling my illness is. I am disabled, the government has said so, but the very word “disability” calls to mind a physical lack. In my case, if someone didn’t know me at all, he would have no idea I’m in pain.

And the PAIN. Searing, burning, radiating. Above a 4 on the ubiquitous 1 – 10 pain scale, I want to lie down. Above a 6, I don’t have a choice. The last time I went to the ER, in May, the pain was so severe I can’t even describe it in words. I couldn’t get into my “zone” and lie still, I had to thrash and scream. The cluster headache community calls this “dancing.” When the pain finally faded away, there was no outward trace. I had some shadow pain, a bruised feeling, but it was almost surprising to look at my face in the mirror afterward and see my normal, pale skin; my own familiar, wide eyes, shocked by what I’d just experienced, but otherwise the same.

I don’t necessarily feel like I would want to have the signs of my disease be more physically obvious. Who would want to stick out that way, to be whispered about, stared at? It would help my illness to be taken more seriously, that is for sure, but at what cost? When I want to feel like a normal person, I really want to be able to do that, and I can.

Almost 20 years after my first tattoo, I can no longer work due to the severity of my migraines, and I can no longer count the pieces of art on my body. I have recently acquired my first sleeve, made of poppies and swallows. Occasionally I am pointed at, but it is because of my artwork, not my ailment. I think my mom was right. I endure so much invisible pain, agony which leaves nothing behind except shock and exhaustion. I want evidence of my trauma. In being heavily tattooed, I am forever marked. I have something to show for my pain.


This Migraine365 page is the first one for which I asked J to follow my blog content, rather than the other way around. I knew I wanted to write about my tattoos for the Headache Blog Carnival, so I sent him several of my favorite photos and this was what he came up with.

Thank you for reading!

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