Editor's Note: The original version of this essay was written by the founder of LymeBrave and posted to her personal website, www.susanpogorzelski.com.
It was cross-posted to The Mighty with the given title on November 30, 2016.
I thought I’d put it behind me. Not for good — I’ll always advocate for those with Lyme disease and do whatever I can to spread awareness and education — but I thought I’d moved on, that it was a thing of the past, that it was something I could say I survived and now I was ready to live my life.
Another chapter. A different story. The life this disease stole from me was right there, for the taking. But there is no separation. Just like I can’t separate myself from this illness, I can’t separate living my life with having a voice connected to the Lyme community.
I say community like it’s some kind of club, but it’s not one you ever want to be a part of. Because this community is made up of thousands upon thousands of people suffering every day, fighting a relentless disease. It has no end — just cycles of feeling good until you don’t anymore.
I fully understand why it’s so easy to deny this disease, especially when there’s so much misinformation out there by the people who are supposed to be helping us. It’s why this disease has become so political in nature, why there’s this so-called “war” between patients and doctors when patients should have only one battle to fight — that against this illness. I’ve lived with this disease, I fought that battle. I thought I won.
But it’s not just one battle.
When you have Lyme disease and its co-infections, you’re fighting a war — just you and the bacteria, with your body as the battleground.
I was tired of fighting.
Which is why, after 15 years of being misdiagnosed, two-and-a-half years of hell in treatment, and six months in remission, I chose to ignore the familiar pain that snuck back into my joints, the fatigue that fell in waves across my mind and made my body feel weak, the tingling in my fingers that’s a sign of neuropathy, and the headaches that crawled up the back of my head. I made excuse after excuse and tried to find ways to manage these symptoms: holistic remedies and essential oils, methods of detoxing and changing my diet, walking the dogs when even small bits of exercise tired me out…
But it was all just padding — a Band-Aid on a much larger problem that I didn’t want to admit.
I cried nearly every day when I was sick with Lyme disease, feeling guilty because I couldn’t go into work. I could barely walk and wasn’t lucid enough to focus on the computer screen, but still I berated myself for not being there to help my colleagues and do my job. I pushed myself to get better, even though I knew how fragile my health had become, and when I finally went into remission, I constantly feared I would always be two steps away from a relapse.
I didn’t take care of myself then. But I was taking care of myself now.
Resigning from my corporate finance job was a long time coming, as increased pressure, unabated stress, and feeling undervalued despite my dedication to the job threw me into a depression. Being sick for so long didn’t help with those coping abilities, but it was being sick for so long that helped me learn the lesson that I think has been shadowing me my entire life:
A drowning man will pull you under in an effort to save himself. To keep yourself from drowning with him, you have to save yourself first.
I was in a position where my job had begun to affect every other aspect of my life, and suddenly small problems that normally would be only a nuisance became insurmountable obstacles that I could no longer cope with. I didn’t expect to make the decision when I did. I wanted to wait until I had something lined up, until I knew what my next step in my career would be.
But life doesn’t always come neatly packaged like that, and even though I’d tried taking steps back towards happiness, back towards myself, it was like there was this blockage, and nothing else — nothing good — could come through.
I hit rock bottom. And then, I tunneled through rock bottom and hit rock bottom again.
Something had to give, so I made the decision to resign.
While I signed up to supplement my income through temp work, I waited to take on any new assignments, learning the hard way that I needed to take the time to separate myself from my last job and whatever work I was going into next. I was so stressed and burned out, caught on the verge of a relapse, that I didn’t think I could manage taking care of myself, let alone a new job.
So, I spent a few weeks recovering and discovering myself again: I picked up more hours at the vintage bookstore where I’d been working Saturdays, I finished writing my book about Lyme disease, I took the dogs for long walks and watched them play in the yard as the weather grew unseasonably warm. I napped by choice, not by need. I read books for pleasure again as my mind cleared, effortlessly sliding into new worlds. I took on a new editing client. As the days passed, I felt my soul expand.
Here was Susan again. I was healthy. I was happy. I was doing everything I loved and becoming more me because of it. I was giving myself the time to recover not just physically, but mentally and emotionally — time I’d never given myself at the height of this illness.
But then, after a month, I was asked to go back to a portion of the job I’d just left, to fill in for five weeks during the summer rush.
Truthfully, it was what I needed— a means of earning back some lost income and the structure necessary to return to the 9-5 working world for future temp assignments. But that stress crept back up quickly, and suddenly I found myself fighting every day for the ability to focus when exhaustion drained me, for some relief from pain that had me back in the Epsom salt bath every night, for time off on the weekends because I need two whole days to recover when familiar symptoms slowly started to edge their way back in.
I finally had to accept what I’d been denying for months: I was in the middle of a relapse.
Back on the medicine, back to taking all those supplements — a dozen and more bottles that fill the bread drawer — and back to monthly visits to my doctor upstate.
This time, I vowed it was going to be different.
Those first few months of the relapse, I sank into a mild depression knowing just what a relapse meant.
For the first two-and-a-half years of this illness, the thought of remission alone fueled me forward, motivating me further along in my recovery as I fought for life and for my dreams. I knew what I was working for, and when I reached remission, I thought I finally had the energy to get there.
I thought, I finally have my life on track as I pursue these dreams. I thought, I can finally show the world what I’m capable of. I thought, now I can live the life I always wanted – I can be healthy, too!
No more pain! No more naps unless I want them! No more limits!
But this disease creates limits, where everything becomes a choice. I could mow the lawn or clean my house. I could do the dishes or cook dinner. I could write or visit with my family. I can never do both. Not when you’re running on empty, anyway, and you have to decide how to use that last bit of gas that’s reserved for emergencies — just enough to get you to safety on the side of the road.
This disease sucks the life right out of you, and even now, a full year since I relapsed, it’s hard to accept that I’m back here again. There has been so much anger, so much resentment, so many tears of frustration at being given a glimpse of something I’ve longed for — a glimpse of a healthy life — only to have it taken away again.
But I’m not back there again — at least, not at the very beginning. And when I look back, I can see I’m not the same, either. Maybe that’s the difference.
I know what I’m facing now. I know what I’m capable of. I know that I’ll carry that determined spirit and everything I’ve been through and learned with me as I keep fighting — for others, for myself. I got through this before, and I know I can get through it again. I have to.
Because I’m not giving up.