What I Find to Be the Most Challenging Part of Living With Lyme Disease

What is the most challenging part of living with Lyme disease? Let’s face it, there are enough physical symptoms that would be deserving answers to this question. Feeling so fatigued that lifting your arms to brush your hair is a struggle, irregular heartbeats thumping you from inside your chest, burning pain deep in your joints, feeling so drunk with brain fog that you are no longer able to drive or read a book.

After six years of living with Lyme disease, I find that my inability to plan anything at all in advance is the aspect of Lyme disease that hurts me the most.

Imagine for a second that you don’t know whether you will be able to get out of bed tomorrow, or on any given day, next week, month, this time next year. How might this affect every one of your conversations, relationships, dreams and aspirations? Dinner dates, birthday parties, weddings, family gatherings, meeting up with friends and holidays. These are usually causes for celebration, highlights that punctuate our day-to-day lives. Instead, they make me anxious, fearful and quite sad. It’s not that I won’t enjoy these events if I am well enough to go to them, but what if I am sick and have to cancel, yet again?

Even the most patient and caring people have their limits, and I can understand why. I often look so well and sometimes I feel well too! In our Facebook, Insta, scroll-through, online personas of photos journaling happy times, the pain behind the smile or the fact that the day trip to the beach may have been the only time I could make it that year just isn’t visible – nor would I want it to be. Being sick is boring. I’d prefer to share fun memories without the chronic illness narrative.

Jennifer Brea, filmmaker and chronic fatigue syndrome patient, describes her and her husband’s life as being “frozen in a sickness amber.” She’s right. This is exactly how it feels.

This life of spontaneity has its upsides, of course. And if there’s one thing late stage Lyme patients are good at, it’s finding the silver linings in life. Before I became sick I was constantly living in the future, waiting for the next pay raise or holiday, worrying way too long and hard about what I would now consider the truly insignificant minutiae of life. Always too busy to stop and notice the special moments that vanish into the blur of the faster pace of a well person’s world.

Through this new lens, I see so clearly kindness in all people, the technicolor beauty of nature and feel heightened gratitude for being able to do even the most mundane things. These sentiments had no more meaning than a meme on a tea-towel in the past, but are now an intrinsic part of my daily life.

I’m a member of a very small club of people who have wept with joy in a supermarket car park just because I was able to drive there by myself and home again. The delight of being able to walk around in the world after months of being couch-bound is often almost indescribable.

I hope that one day I will be well enough to fill up my diary with plans but for now, I enjoy what I can of this unusual, living in the moment, life.