Janet's Life 'In Spite Of' Migraine
The Editorial Team at Migraine.com is highlighting people in the migraine and headache disorder community in a series of interviews. We talked to Janet, who shares how she's balanced the miserable and not-so miserable parts of a life with chronic pain.
Janet's migraine story
My migraines started my sophomore year in high school. There was a period of time when I was 14-15 where just about every day - certainly every second or third day - I’d wake up semi-functional but by early afternoon, that was it, I couldn't make it through to the end of the school day. Before long I had another type of chronic pain too, back and nerve pain that no one could diagnose for decades.
Migraine and back pain chose my career
The combination of the uncertainty of migraine with the uncertainty of a chronic back condition was a big part of why I chose the path I did professionally. I was presented with the challenge of: What can I do for a career where I can work around a two-day migraine or needing to lie down and rest halfway through the day from a mystery back condition? That narrowed down the broad field pretty damn quick. (My advice: try to find a career where you can contribute in a fulfilling way despite your health challenges.)
Finding flexibility in my work
I love my job; I’m truly proud of the things I’ve been able to do, the publications I’ve been able to write for, and the stories I’ve been able to tell. (Including a number of profiles about people with chronic migraine, in the INvisible Project magazine I write for as part of my part-time job at the US Pain foundation!) But the need for flexibility was a big part of what drew me to fields like media production and journalism that are deadline-focused and freelance-friendly.
I've done it all "in spite of" migraine
I’ve ended up being able to do some very cool stuff in my personal and professional life, but it’s all ‘in spite of’ the fact that I have these chronic pain conditions has affected literally every facet of my life. My experience is that even though I know how to deal with them “better” now, I’ve got a toolkit and a routine, they are still miserable. And miserable in a completely unique sense.
A tug of war of control
Having chronic migraines is really tough. It’s in your hands, in terms of needing to take the initiative to find good doctors and treatments and answers and then to politely nag your constellation of healthcare professionals until things happen. But it’s also out of your hands, in that you have no control over (or idea of) what medical advances the future holds.
Craft a life you can be proud of
There are so many treatment options for migraine now that you can investigate, but even if the landscape today doesn’t have answers, the landscape a few months or yeah, even years, down the road might. But until that happens you have to last through the miserable bits and, hopefully, craft the good moments you have into a life you can not just survive through, but be proud of.
Managing the pain
In terms of my non-migraine pain, it took me almost 20 years of increasing agony before I even got a diagnosis. But once I did, I had surgery, I switched meds, and my pain level now is actually lower than I had allowed myself to even hope for.
Doing what I can
Despite all my natural inclination to do everything all the time, I’ve learned to at least try to do what I can, when I can, as much as I can (I really ought to have “perfect is the enemy of good” tattooed on me somewhere). Looking back, I actually have done a lot of really cool stuff, personally and professionally! There was a lot of pain and suffering behind those accomplishments that very few people saw. But that doesn’t make the things I achieved any less worthwhile.
My advice to those who are struggling
My biggest piece of advice is: You have to learn to be your own advocate. Maybe the first doctor you go to will be fantastic and the meds they prescribe will help enormously… but most people don’t have that experience. It can be hard to find a doctor with experience with migraines, it can be hard to find medications or treatment options that help, and it can be hard to get your health insurance to pay for certain valid treatments (high-flow oxygen is the big one that comes to mind, but many insurance companies also restrict the number of doses of breakthrough meds a patient can get every month). There ARE answers and help out there, but you have to take the initiative to learn about them.
Please let me know if you have any questions about my bio or history! I’ve had some weird twists and turns over the years I’ve been dealing with chronic migraine, both personally and professionally.
How much has your migraine disease changed or evolved over time?