Susan Pogorzelski is one of the most articulate writers about chronic illness I've come across. It's clear why writing is her chosen career. In this interview she elegantly puts into words the way many Lyme patients feel, but don't know how to express. Like many of us, Susan was infected with Lyme in her youth and then searched for answers for many years. Despite her long, difficult battle she remains positive and hopeful.
Tell us a little about who you are and what you do:
Thanks for having me here, Kerry. To tell you a little about myself, I'm an author, editor, and creative coach for my small business, Brown Beagle Books. My latest novel, The Last Letter, was released in September and is based on my own experiences with Lyme disease. I'm also a passionate Lyme advocate and contribute regularly to The Mighty and Global Lyme Alliance blogs. Additionally, I've created a community on Facebook called Being LymeBrave which aims to help patients heal from the emotional toll of living with chronic illness.
What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
We can trace the beginning of my health problems back to a middle school camping trip, after which I came down with what we believed was mono. After that, I was never really the same, as year after year I seemed to have a new symptom crop up and then resolve itself. One year, I had trouble breathing, which we now attribute to air hunger. Another year, I had OCD tendencies. Finally, in high school, I had severe panic attacks. Eventually, my doctors diagnosed me with Chronic Fatigue Syndrome, as fatigue was the one symptom that remained with me after all this time. Then, when I was in my late twenties, I began having severe abdominal pain. After dozens of doctor visits and tests, they removed an infected gallbladder.
I thought that was the end of my health issues. For about a month, I felt great. But then I started to experience strange new symptoms, and my health declined rapidly. I developed Neurally Mediated Hypotension, migraines, neuropathy, severe neurological and psychological issues such as trouble reading and writing, balance issues, and derealization. I was in so much pain, it was difficult to walk. I was so fatigued, I couldn't lift my head from the pillow for more than minutes at a time. Unfortunately, the rest of my story is all-too familiar to Lyme patients. I saw specialist after specialist, had test after test, but there weren't any answers. Finally, in May of 2012 - six months after my gallbladder surgery and fifteen years after that camping trip - I found my LLMD who would diagnose and treat me and in every way save my life. I've been in treatment for five years now, after a brief period of remission in 2014. I'm hopeful that since I reached remission once, I'll be able to reach it again. At least, that's what I'm fighting for now.
In honor of Lyme Disease Awareness Month, what do you want people to know about Lyme disease?
Lyme is such a lonely and isolating experience, particularly when we're first diagnosed. Not only do patients have to contend with the pain from their physical symptoms, but they're trying to survive a very real, very devastating illness that the medical community continuously denies. What makes it worse is that this disease is still so wildly misunderstood because of this denial. What I want people to be aware of is that the effects of Lyme disease go beyond the physical symptoms. It can completely change a life, which makes recovery that much more of a challenge. For those who do have Lyme, I hope they know they're not alone in these struggles, that there are people fighting for them and with them. For those who don't have Lyme, I hope they're able to understand what the Lyme experience is really like so that they can grow their compassion.
What are your passions?
Writing has always been my first and forever passion. What's made this illness particularly frustrating is that there have been so many times when I've wanted to write, but I've been unable to do so because of severe neurological dysfunction. However, I'm grateful that I'm able to use my writing now to raise awareness, share our stories, and help others.
What was your lowest point and how did you find your way out of it?
Oh, boy. My low point. I've had many, as this disease has been a near-constant roller coaster of few highs and a lot of lows. One low in particular was right around the time of my relapse. It had taken me two and a half years to reach remission, and I was so eager to be well again and have my life back, I ignored the warning signs and familiar symptoms. My psychological symptoms caused by the co-infections were in full-swing at this point. I didn't think I was going to survive treatment again, and there was a part of me that wasn't sure if I wanted to. But I sought help - first from my family, then from my friends, and then from the Lyme community, who offered me their strength when I felt like I didn't have any left. It's been two years now, and while some days are harder than others, I'm slowly getting better again. Now I cling to hope with everything I've got.
What is the one thing that you have found most helpful in treatment?
It took a couple of months when I was first diagnosed to find an antibiotic cocktail that would work for me, and though it took a long time, it led me into remission. With this relapse, we tried a number of different combinations, but knowing how the first worked so well for me in the beginning, I was pretty insistent with my doctors that we try it again. Luckily, they were willing to work with me, and I've been seeing steady improvements since. So I would say be willing to speak up with regard to your care - you know yourself and how your body responds better than anyone, so don't be afraid to take control of your own health.
Also, Epsom salt baths for the muscle pain are lifesavers. Light exercise in the pool is also tremendously helpful because of the buoyancy. Once I figured out I could move in the pool with little pain, it was like I came alive again - just don’t overdo it.
If you could take away one symptom, which symptom would you take away and why?
The fatigue is and always will be my worst symptom. The pain has been excruciating, the psychological symptoms frightening, and the neurological issues frustrating, but the fatigue makes me feel like I'm living a half-life, and there are times when that becomes almost unbearable for how much I'm missing out. I've learned to accept and even live with this fatigue after two decades, but it's still the one I most often wish away.
What are you most grateful for in your healing journey?
The Lyme community. This community is made up of some of the kindest, bravest, and strongest souls I've ever had the privilege of meeting. While I hate that we've had to meet due to such a miserable, shared experience, I'm grateful for the friendships that have formed because they truly enrich my life. There really is nothing like finding someone who understands you, especially when it comes to this disease.
Do you have any advice for the newly diagnosed?
Don't give up. I know it sounds so cliché, but this journey is a long one, and so having the resolve to reach remission - which is more than possible - is prudent.
I know there are times when we feel weak, wondering when that change might come, but please remember that you're so much stronger than you feel right now. Stay strong. Be brave. And when you don't feel strong or brave, reach out to this community. We'll be strong for you.
What would your perfect day look like?
My perfect day looks a little different now that I have Lyme. Once upon a time, I would have said my perfect day consisted of strolling along the Seine in Paris, reading books and eating French pastries. Actually, that's a pretty great dream, so I think I'll keep that one tucked in my pocket.
But now my perfect day is the one I had yesterday - the sun was shining, and everything felt so fresh and new and alive because it's spring now. I had more energy than I’ve had in months, so I took my dogs for a short walk, then sat on the porch swing and listened to some music. It was perfect because for a little while, I wasn't tired or in pain, but rather at peace. Peaceful days are my new perfect day.
Please share a mantra or quote that inspires you:
From Sarah Williams' poem, "The Old Astronomer To His Pupil:"
"Though my soul may set in darkness, it will rise in perfect light;
I have loved the stars too fondly to be fearful of the night."
Find Susan at the following links:
Websites: www.lymebrave.com / www.susanpogorzelski.com
Facebook: Being LymeBrave
Amazon: The Last Letter: A Novel
I'm Kerry and I was diagnosed with chronic Lyme disease in 2016. This is a positive space for those of us coping with Lyme disease and other invisible illnesses.