The theme this year is, The Art of Migraine and Headache Management. The only idea I've come up with is to spend the entire month documenting the raw ugliness and everyday realities of living with chronic migraines on my personal Instagram account.
This is a big deal for me for a couple of reasons. First, I don't really share the details of my struggle with many people in my life because I don't want to bring folks down and I want them to treat me as normal as possible when I actually feel well enough to go out and socialize. Second, I don't share much about my life with chronic migraines on my personal social media because I fear this information could some day be used as a reason for potential employers or insurance companies to discriminate against me.
Everyone I know, knows that I have frequent migraines. Some people know that I have chronic migraines and also understands what that means. A handful of people know just how much it effects my life. Any lack of understanding on the part of my family and friends is mostly due to the amount of pretending I do, both in person and on social media.
When people ask the obligatory - "how are you?", I smile, gloss over the ugliness of the truth and change the subject. I respond honestly when people truly ask about how things are going or how I'm feeling. But I almost always follow it up with a positive platitude in an attempt to make us both feel more comfortable and to move the conversation in a different direction. Basically, if I'm out socializing with folks, I'm putting on a show. Because my chronic migraines (and other conditions) are invisible illnesses, people tend to believe what they see in me - the show I put on for them.
I can usually put on a show for a short period of time. But what few people see is the preparations that went into the show, the struggle to get through it and crippling aftermath. Even the handful of people who get glimpses into the reality of the show never truly get to see the mental and emotional toll it takes. That's a personal hell that people can't know unless they have experienced it.
I've been feeling increasingly brave about sharing more with my friends and family. In the past few months I've shared pictures of myself during a migraine on my personal Instagram account. It is this impulse to share some of these moments that inspired me to want to spend this migraine awareness month sharing the big, ugly, real picture of living with chronic migraines with them.
Then I saw a statistic last week about the huge percentage of applicants who have been taken out of consideration for jobs because of what is on their social media and I got cold feet. That's my big fear - being discriminated against because of my chronic migraines. The reality is that, I've been out of work for so long because of my health that I would need to explain my employment gap to any potential employer.
But
This fear is very real and runs deep inside me. And what's worse, it is unreasonable to think that this information could be used against me in the future.
I want to reject this fear. I want to be brave and live more fully in my truth. I want to stop pretending out of fear. I want to live more authentically and not just as my alter ego - Migrainista. Am I brave enough? I think so. I'll keep you posted.
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