Written by Erica Carrasco, aka Achy Smile
Presented by Chronic Migraine Awareness, Inc.
Back in the olden days…well more like 16 years ago…when my migraine attacks turned into a limping, stuttering, one-eyed, drooling monster I knew of no one living through the same kind of symptoms I was. I was a mystery to all the nameless doctors I saw over the years. Some told me they couldn’t help me and turned me away, others just went with the ole’ “your symptoms are a psychological manifestation of a past trauma.” So, I saw a few clinical psychologists. While they didn’t disagree that stress was a huge contributing factor to my attacks, they were not convinced that there wasn’t something medically wrong. Thus, began a vicious cycle of trying to find a doctor who would treat me for migraine and a therapist who wouldn’t quit their job or just not be the right fit for me.
Finding a doctor that would both listen to me, consider what I had to say, and not invalidate me would be a long road. I had very damaging experiences with some of them. In one instance, I was yelled at like a trainee in boot camp during a severe hemiplegic migraine attack. The high-ranking physician explains to me that he looked over my neurologists’ notes. He condescendingly yells at me that she says my attacks were psychological. He continues in a loud, booming voice that I “must have some really deep, dark secrets” I wasn’t telling anyone and they’re manifesting as hemiplegic migraine. He also said since it was a rare migraine type, it’s not possible for me to experience them.
This wasn’t the first time I’ve been told these things, but it was the first time I felt so dehumanized. I was speechless. I didn’t stand up for myself, I couldn’t. I could hardly move and by that time, I could barely breathe. I was crying and hyperventilating while he continued. I have no idea what he said by then, I tuned him out and internalized everything he had to say. My husband, in uniform, was shocked silent, not quite sure how he should react to someone who was his superior. I was able to get out that I wanted to leave and as he wheeled me out of the room the doctor was still shouting his opinions. By the time we made it to the parking lot, my husband had to stop because of how bad, my now panic attack, had become. He worked with me to slow my breathing (he’s a pro having generalized anxiety himself) and kneeled so he was level with me face-to-face. I don’t know what he said, but I do remember telling him I would never step foot in that facility ever again. I never did, not for any type of appointment.
Fast forward to today, I have an amazing therapist to help me live with chronic migraine. I also attend the Miles for Migraine Virtual Support Groups on Thursday nights. Facebook support groups are also my go-to, I’m in several with so many of you and I even host my own called Migraine Support Group by Achy Smile. Through all my years of advocacy I have learned that there’s no substitution for the understanding and empathy of those living with migraine, too. My community includes Stephen, Marissa, and Noah – my amazing little family; my parents, my sisters and brother and their families; my online migraine family that come together and rally whenever I ask to share a post or donate to a migraine non-profit; and many non-profits I work with on a daily basis to help spread the message that migraine is more than a headache.
I had great session with my therapist last week. We talked about why I began advocacy. I told her that long ago I was asked to journal how migraine made me feel. With a background in cyber security I used my tech knowledge to start a blog. I already knew how to create a website and I am a graphic designer, so I just pulled together all my talents and began Achy Smile. Before that I had been involved in a Facebook group just for people with Hemiplegic Migraine. It was amazing to meet so many people all over the world who just “got me.”
I couldn’t have made it to where I am emotionally and mentally without my community. Sharing my story and hearing yours is what keeps me going. Advocacy has fulfilled the purpose within me that I lost when I lost my career. Finding your purpose after a chronic illness diagnosis is a very mentally draining process. Together with therapy and talking with my migraine family online every day is what pushes me to keep living each day. I’ve gone to a very dismal place in my mind and thankfully, I’ve learned that I still matter. That my voice is important, as much or more than someone who is healthy and functional 100% of the time. In my disfunction is where I thrive because it humbles me to seek you out and find solace in the fact that you get me.
You can join Erica at:
Migraine Support Group: https://www.facebook.com/groups/achysmilemigraine