Withdrawing: on a video by Lisa Benson

Inspired by my friend Lisa’s video for Migraine.com, I wrote this post on Facebook. Now I am sharing it here as well because I think it’s super important. Lisa identified something that has been bothering me a lot lately, and partially prompted my last blog entry.

 

It’s been a good week. The last day or two, I have been vivacious and social and affectionate with my friends. I have been able to be what I think of as *my best self.*

But just one month ago, being in public with those very same friends (my theatre family) was agony. I’d had a week-long attack and subsequent depression and when I was able to push through, I didn’t meet anyone’s eyes. Or laugh, or talk, and when I did talk I stammered and mumbled. I came late and left early. I constantly wiped away tears either due to panic and sadness, or migraine symptoms. I was emotionally over-sensitive. I winced and flinched from the fluorescent lighting and noise.

In public during a flare or attack, I wear mentholated patches on my head and TheraSpecs on my face. I dose up on medication, increasing migraine’s cognitive difficulties. I hide. At home I’m under the covers in the dark. In public, I will hide behind my hair, or in shadowy corners, or in my car, or in the restroom. I pull into myself, hunching my shoulders. I pile concealer on dark circles and the cystic acne from immunodeficiency and meds. I am a wounded deer in headlights.

The other aspect of a long attack for me, and something not touched on in the video below, is my social media activity. I am a patient advocate for migraine disease. While confined to bed, I share my (admittedly depressing at best, disturbing at worst) feelings about the process. I share my symptoms and how they are affecting my family. I share exactly how I’m feeling emotionally. That can be understandably uncomfortable for people, to read that (as during Cinderella’s tech week) I feel almost like I don’t want to live anymore if I can’t be doing what I love most. Publicly discussing severe pain and illness, depression, and suicidality is taboo. But talking about it is what I do. It is, quite literally, my job.

It is also Lisa Benson‘s job. In this video, she explains why during an attack we can seem withdrawn and changed. It would mean so much to me if people could watch my friend speak for us, describing why we stammer, why we hide. Especially my supporters and much-loved friends at HYT and Julie’s Dance Studio. I may tag you in comments. That doesn’t mean I feel you don’t care. It means I know you do.

Thank you for giving me a voice, Lisa. You’re amazing. 💜 We all are.

12,531 Views

This is a video you can share with close family and friends to explain why we may appear withdrawn or not ourselves when we are dealing with migraine. https://migraine.com/?p=89255

I am now a Patient Advocate and Contributor on Migraine.com

Sometimes, everything lines up in exactly the right way.

My favorite headache blogger, Kerrie Smyres of The Daily Headache, had posted an article about several available CGRP studies and the pros and cons of getting involved. Since one of the studies was Amgen, I commented that I hadn’t had a hugely noticeable improvement on that drug, but that I would soon begin a new study. I didn’t think anything of it as Kerrie doesn’t always interact with readers, though she had been very helpful to me a couple years ago when I was considering trying Ritalin as a preventative, which she had also attempted. 

So I was pleasantly shocked and super excited to receive an email from Kerrie thanking me for giving a shout-out to her company TheraSpecs in an advocacy post on Facebook. She then asked if she could interview me for either her personal blog or Migraine.com about my experiences in the CGRP studies. 

The CGRP drugs in development right now are going to completely revitalize migraine treatment. They will be the first drugs to be created for the prevention of migraine – think of that. 36 million people in the US suffer from migraine and ALL the drugs used to prevent them are for other things. Used off-label for migraine, most cause significant side effects and are very hit or mis in their effectiveness. So there are millions of people waiting with bated breath for the new drugs to be approved, drugs which target migraine specifically and have no detrimental side effects. Needless to say I was ecstatic to speak frankly about my experience on two of the new drugs, and opted to have it published on Migraine.com  for the largest audience.

Kerrie sent me an email of very specific questions. My migraine brain had a hard time recalling all of the details, so I dug up my consent forms and checked my blog for dates and information. I answered the questions as thoroughly as possible, Kerrie asked for clarification on some things, and said she would submit the article to be published when Migraine.com was ready.

It was published, which I blogged about previously, and I interacted with some readers on Facebook. Because of this article, and probably this blog, it was decided that I would be a unique and valuable voice as an actual Migraine.com Patient Advocate and writer, and I was asked to join the team.

It is hard to describe to someone outside the chronic illness world how exciting that was. It would be sort of like if a musician who plays local bars in his hometown was suddenly asked to tour nationally with famous bands he always admired. I’ve been blogging for five years to around 300 people. Now some of my writing on migraine will be seen by at least 60,000. And those are just the people who subscribe to the newsletter.

I will still be blogging here about more personal topics and will post my migraine.com articles after they are published. I have two posts ready to go, whenever Migraine.com is ready. I am completely thrilled to be joining this illustrious list of advocates including Katie Golden, Tammy Rome, Diana Lee, Nancy Harris Bonk, Anna Eidt, Janet Geddis, and Jennette Fulda, whose book Chocolate & Vicodin I have been wanting to buy for some time. All of the contributors have so much to offer and I am excited to get to know them better and become more familiar with the names I didn’t know previously.

I am @headcase73 on Twitter.

Life has been hard for several years, but J and I have been working hard to make things better. And I think we’re succeeding. 

Yay!