Lessons from Lyme: Lockdown Isn’t Forever

by Jennifer Crystal

With COVID-19 cases surging, many states are returning to lockdown, and those that aren’t may soon be headed that way. The first time we were in lockdown, it was almost spring, so we were able to spend time outdoors. This time, it’s almost winter. People are worn out from eight months of restrictions, changes in work and school schedules, financial strain, and social isolation. Knowing it’ll be harder to have outdoor, socially distanced visits in the long, dark winter—a difficult time of year for many, pandemic or not—folks are understandably feeling anxious about a second lockdown. How will we get through it? How long will it last? Will the pandemic ever end?

Lyme patients know these fears all too well. Patients who are in treatment, which sometimes makes them feel worse before better, are often bedridden, wondering if they’ll ever get well. They are stuck inside, too exhausted to socialize, and can suffer from anxiety and depression. Their lives feel run by restrictions. In that scary place, especially when you’re not feeling well, it can be hard to believe—let alone see—that there’s a light at the end of the tunnel.

I am here to tell you that there is.

When I was bedridden with Lyme disease, babesiosis, ehrlichiosis, and chronic Epstein-Barr virus, I didn’t believe that I would ever get better, especially when I sometimes felt like I was taking one step forward and then two steps backward. I wasn’t sure if I’d ever live independently again. I wondered how I’d ever support myself when taking care of my health was a full-time job.

My situation seemed hopeless and endless. But it wasn’t.

My situation seemed hopelessss and endless. But it wasn’t. With proper medication, adjunct therapies, and a shift in perspective, my life did improve, and is still improving. I have regained energy. I am living independently. I’ve found work that fits within my scheduling needs. I can exercise. I’m living a full life, and while it’s not the same one I lived before I got sick, it’s a bright one.

As I’ve said before, the journey has not been linear. I relapsed once, forcing me back into the Lyme version of “lockdown”. The same questions and fears came up then, but in the end, they were all allayed.

I have learned the hard way that lockdowns are not forever. For some Lyme patients who have been suffering for years, it may feel that way, but there is always hope; my journey has spanned more than two decades. No matter how long the second pandemic lockdowns last, they will end. Pharmaceutical companies are working on promising vaccines that may be available to the public by next spring (for questions about whether Lyme patients should get this vaccine, see my latest Dear Lyme Warrior…Help! post). Though we don’t yet know the efficacy or side effects of a potential vaccine, we do know it’s in sight.

Lyme also taught me that clinging to an end date can worsen anxiety. When I was first diagnosed, I only wanted to know how long it would take for the antibiotics to work. My doctor said he didn’t want to give an exact timeline, because every case is different. This response frustrated me and it frustrated my family, who wanted to know how long I’d be living with them and when I could get back on track. But we ultimately had to learn that late-stage cases of Lyme don’t clear up with a short course of antibiotics; treatment can take months or years.

I had to learn that the end goal was not for me to get back to my previous life, but to move forward in the context of chronic illness. We had to learn that constantly asking “When?” or, “How much longer?” was akin to a child asking, “Are we there yet?” on a long car ride.

Eventually, we reach our destination, but the journey is much smoother if we accept where we are, believe that we’ll ultimately get there, and in the meantime find ways to enjoy the ride. Being stuck in a car isn’t a fun, but playing games or listening to music makes it better. Being stuck in bed isn’t fun, but quiet, self-care activities can help pass the time, such as my Lyme warrior staycation suggestion in this post. Being stuck at home during a pandemic with worries of catching COVID-19 and anxieties over many aspects of life isn’t fun, but we can find ways to make the most of it, as I explained in my recent “Beauty of Adapation” post.

We can make lockdowns shorter

Finally, I’ve learned that while there are aspects of these situations we can’t control—Lyme patients don’t know how they’ll react to medications, or whether spirochetes will start replicating; during the pandemic, we don’t know if someone in our community or household will get COVID-19 and how it will affect them, nor do we know if people in our community will follow social distancing guidelines—there are aspects we can control. Lyme patients can follow doctor’s orders, get the rest they need, stick to a Lyme diet, do adjunct therapies, and practice self-care. In effect, they can give their bodies the best chance at fighting Lyme. During the pandemic, we can do our part to practice social distancing, wear masks, and wash our hands, to reduce the risk of spreading the virus. By taking these steps, we can make lockdowns shorter, and that’s a goal that everyone can get behind.

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