How Migraine has Prepped Me for this Pandemic
The entire world has just been hit, in a sense, by a migraine pandemic
You wanna know why I wish every single person experiences a full-body, four-phased, 72-hour migraine attack? Because the world doesn’t understand. Because the world doesn’t comprehend how horrible life can be with migraine disease. The world is ignorant, uncaring, judgmental and harsh to those who have migraine. Because in the madness of this pandemic, I hope people will look outside of themselves.
Yet this serious, global pandemic is giving the whole world a small taste of life with chronic migraine. The non-head pain, if you will. The struggles, fears, anxiety, isolation, financial burden and uncertainty we face daily. Those who are really paying attention, should notice how disparate the term “normal” is, depending on where you sit. In the wake of the spreading coronavirus, the world is watching through metaphorical Theraspecs, not through rose-colored glasses.
Whether you live in Wuhan, China or Worcester, Massachusetts, we’re in this together; in the unknown. And that’s a scary place.
Welcome to my world, on a pandemic level
There’s a million thoughts running through your head. Let me show you how your thoughts and mine are very similar, yet very different.
|You:||Every hour a new headline emerges and my anxiety rises.|
|Me:||Every time I leave my house my anxiety rises. What happens if a migraine attack hits while I’m out? Do I have meds on me? Can I get home safely?|
|You:||People are self-quarantined, elected officials are shutting down restaurants and schools are closed indefinitely.|
|Me:||I’m forced to be a shut-in, not because it was mandated, but because my body mandated it. Those like me were self-quarantined before that was cool.|
|You:||The price of a facemask is highway robbery.|
|Me:||The full cost of treating my chronic migraine disease is more than six figures annually. Even with insurance, it is hard for me to afford all the co-pays for appointments and medicines. I get robbed in the middle of the day all the time.|
|You:||We have to stay six feet away from the closest person and no gatherings of 10 or more people.|
|Me:||When I’m in a setting with more than 10 people – my super-sensor brain can’t process the lights, music, background laughter, multiple conversations and beeps and buzzes of electronics.|
|You:||Handshakes have turned into elbow bumps…and that’s before the more recent isolation crackdowns.|
|Me:||My daily social interactions are with my online family. We send “gentle hugs” and “positive vibes.” No physical contact is my normal.|
|You:||I now question every sneeze and cough and ingrown toenail. The hypochondriac in me has emerged.|
|Me:||My health fluctuates quicker than the stock market. I’m always at risk for developing co-morbid conditions that are connected to migraine. I refuse to live in constant fear of developing Crohn’s, epilepsy, COPD, brain lesions, or multiple sclerosis – but the odds of me getting one of these may be higher than my odds of contracting the coronavirus.|
|You:||Restaurants, schools and businesses are closed indefinitely, Unemployment rate may rise to 20%. The economics of this pandemic are unsettling. When will Congress act so homelessness doesn’t become the new norm?|
|Me:||I’ve lost income because of the frequency of my migraine attacks. My career, stolen from me. I’ve fought the system to get the services and benefits I deserve. None of it has been easy, but I fight for myself and the other 40 million Americans that live with migraine disease.|
|You:||After years of casually watching the TV show “Preppers,” only now do I realize that my house is NOT “hunker down” ready.|
|Me:||I hoard supplies. Especially medications. Between insurance restrictions and lack of supply due to manufacturer errors, I’ve learned to save pills for a catastrophic rainy day.|
|You:||When will we hit rock bottom?|
|Me:||I know the crevices of rock bottom. Intimately. I’ve been through the sludge. Yet I’ve managed to rise up every time. The world will, too.|
A New Reference Point
Well, this is not exactly what I meant when I said I wish everyone has a migraine attack at least once in their life. I watch as the world faces new restrictions, new complications around every corner. Life as we know it is highly unpredictable. One minute – fine; the next – hugging the toilet and praying for mercy.
Yet there is a teeny, tiny modicum of validation I feel. Going forward, when I try to explain the complexities of migraine disease that don’t include head pain, others will have a reference point.
The hard part is knowing that this pandemic will pass, but I’ll still have an incurable disease.
However, the world will eventually go back to normal, but I hope society begins anew with eyes wide open. More compassionate, more understanding, less judgment to those with migraine or any other chronic illness.
COVID-19 is no joke…
…especially to millions who have chronic diseases, invisible illnesses and compromised immune systems. Cystic fibrosis, rheumatoid arthritis, cancer, diabetes, lupus and yes, even Lyme disease (your Corona and lime jokes are only kinda funny). Please, as you build up your stockpile, be aware that some of the scarce hot items you covet, could be a vital, everyday necessity for many people to stay alive. Don’t be greedy. Don’t capitalize off the situation. #HighRiskCovid19
On Saturday, Oct 7, 2017, I participated in the Miles for Migraine event in Philly. Besides volunteering, I also brought the INvisible Project: Migraine Edition display with me to share the stories of those living with migraine disease. Little did I know that I would play hostess and run around with a microphone, interviewing participants…
I started getting in-patient ketamine infusions at the Jefferson Headache Clinic (part of Thomas Jefferson University) in 2013, which I fondly refer to as “Headache Camp.” The following articles , were originally written for Migraine.com. I probably get the most questions about my use of ketamine. Honestly, it’s been the basis of my treatment plan…