Written By: Catherine Charrett-Dykes
Founder and President of Chronic Migraine Awareness, Inc.
For the past month or so now, the nation has watched you live and report on your experience with this new disease, this new pandemic – Coronavirus. Your reporting connected with me in a way that gives me hope that we would discuss a different pandemic that has been going on for over 6000 years – migraine disease. You’ve given me hope that our forgotten migraine disease community will be heard if you help give us a voice.
During your shows listed below are a few of the issues you raised regarding being Covid-19 positive and accompanying symptoms.
The physical and emotional aspects of Covid-19;
You called it the “Beast”
It is weeks not days and is hungry
Have to fight, it hurts
Wanting to curl up in a ball and stay there
Once “healthy”, still needs to rest
Depressed from having fever for 20 hours
Weeks of long chronic illness
Effects you emotional and psychologically
When you are in pain the best thing to have is a distraction
Get a little mean
Spacey, brain fog, edginess
You would do anything to escape it
Sick of being sick
Want to get out of your basement
Wife killing herself taking care of you
Understanding that family connection
How you have been helped by the community, your followers
Time away from the kids, wife
Lucky to have someone care for you
Resilience of the people that are sick and still have to care for their family
Get healthy to help others
The pandemic has changed everything
Don’t want people to have to deal with this
Long way to go
Kids running things, Lord of the Flies
The need to feel useful;
Got up and worked on show even while sick
Gave a face to the disease
Made it ok for people to be sick
Let them know it is survivable
Give Purpose to the pain
Add to all this pain that makes you consider drilling a hole in your head. Light and sound sensitivity, and about 100 more possible symptoms. All these things can be said about chronic migraine. Hopefully you haven’t rolled your eyes and said what most think, that it is just a headache. It isn’t. Migraine has destroyed parts of our lives that we will never get back.
The world at large is now seeing what living with migraine disease is like. How we’ve lost our jobs, and have been practicing social distancing for our own health, coping with the uncertainty of the future because there is no cure. People with Covid-19 are now experiencing what it’s like to live with migraine disease and not being able to join in family gatherings; the isolation, depression, and anxiety. I have missed countless family events and occasions, including my mother’s funeral. At one point I was planning my suicide.
Migraine disease is listed as the 4th most debilitating disease but is not adequately funded by the National Institutes of Health. Over 40 million people have migraine disease in the U.S. Thankfully for the last 13 years, Headache on the Hill, led by the Alliance of Headache Disorders Advocacy has been pleading for more funding and treatments that do not include opioids.
There aren’t enough doctors to treat us all – just over 550 – and are not evenly dispersed throughout the country. This means people living with migraine disease have to travel, sometimes eight hours or more to get properly treated.There are no definitive tests to confirm a migraine diagnosis. There is no cure. One attack can last for days before we are hit with another attack.
I started a nonprofit, Chronic Migraine Awareness, Inc. to try to help others while searching for my own answers. I feel as passionately about this cause, as you do with Corvid-19. The difference is that people will either recover and life goes on as normal or pass away. For those of us living with migraine disease, it never ends. We live with it every day. Imagine having a resurgence of Covid-19 over 15 times a month.
We need to flatten the migraine disease curve as well. It needs to be stomped out of existence.. Our bodies are screaming for an answer. Please help us call attention to this forgotten pandemic.
I’ve included the book written by Mary Franklin, Executive Director of the National Headache Foundation, and Dr. Seymour Diamond, Founder of the National Headache Foundation and Diamond Headache Clinic, about the history of migraine. We need a champion – help give us a voice. You have said you are a man who likes to do what you can. You can do us a world of good.
I’m looking forward to working together,
#LetsGetAfterIt #CMAware #FlattentheCurve
Founder/President Chronic Migraine Awareness, Inc