Your experience is unique in that you haven’t just battled Lyme Disease but also trauma, depression, and years of misdiagnoses. Did it feel like your Lyme diagnosis was as much the end of one journey as it was the beginning of another?
I think for most people with Lyme it works this way. We have a long way to go with research, resources, funding, the works. It’s a very tough illness that becomes many illnesses for most people. The journey never quite ends.
Your memoir, Sick, mentions “the myth of full recovery”. What do you mean by that?
I’ve only met two people in my life who were 100% recovered of chronic/late-stage Lyme and not in some form of remission. We don’t have that perfect cure yet for people whose cases were not caught in time–or people who could not afford treatment early enough–but there are some treatments that allow people to live very normal lives. Even getting to that can feel like a miracle for most.
What’s the worst medical horror story you can share with us?
Almost every ER visit would qualify as that! But ages ago, there was this ER doctor who would always insist I go to the psych ward of a hospital I would show up at for chronic pain problems. Finally one time I gave in and I spent some very troubling days there only to not get medical clearance for actual treatment in the psych ward. I was like, “so there is something wrong with me physically then?” They were like *shrug emoji.* It sounds like a punchline, but I have rarely felt more hopeless.
Any moments of humor that have happened along the way?
People would be surprised to know that in IV wings/rooms/wards, there is laughter and joy and bonding as much as there is silence and fear and tension. I felt grateful for those unpredictable moments when even the absurdity would create something that felt so close to loving.
“I am more committed to hope than I ever have been."
What has surprised you the most about your experience with chronic illness?
That most people are chronically ill or become so eventually. Sadly.
What is the latest update (if there is one!) in your battle with Lyme? How are you feeling these days relative to what you’ve been through?
I am often up and down because I deal with MCAS, EDS, and POTS which complicates other conditions and certainly Lyme. Anxiety about affording wellness continues to be a top worry. But I am now nearly 45 and I have been through so much that I feel like I have to believe I can survive even the worst setback. I am more committed to hope than I have ever been.
What would you say is the biggest misconception about chronic illness? Is there anything you wish you could make people understand better?
I think people who are healthy really think that chronic illness is linear, that you go up steadily or down steadily. And it almost never is. It’s a series of ups and downs, cycles of spirals really.
How has your Sollis experience been so far?
My boyfriend and I are so grateful for Sollis as all our doctors are so often booked and unavailable and our very minimal health insurance barely gets us anywhere. I really think concierge services like Sollis just might be the future of medicine! I know I sound like an ad lol but everyone we have spoken to has been just so amazing.
Your book definitely subverts the traditional idea of the illness memoir, but if there has been any silver lining, what would you say it is?
That I am still alive. That I can still write. That I can still laugh.
What have you learned about yourself—and/or the human spirit in general?
About myself? That I actually am not as strong as I used to be and that’s okay. The human spirit? Who knows! All I know is that there are more good people than bad and that means a lot is possible in this world.
Any words to live by?
Well, I’m a novelist—it would take 200+ pages for my honest answer!
“I think people who are healthy really think that chronic illness is linear, that you go up steadily or down steadily. And it almost never is. It’s a series of ups and downs, cycles of spirals.”
