What I’ve Learned From Chronic Lyme Disease

I’ve had Lyme disease for seven months. The persistent fatigue and pain, not to mention the cognitive and emotional dysfunction, have made Lyme probably the hardest thing I’ve ever experienced. However, it’s exactly these challenges that have taught me some important life lessons.

I’ve learned:

1) Don’t worry about accomplishing a lot.

I used to care a lot about using my time well and accomplishing as much as possible. I was one of those people who answered “how was your day?” with “great, I got a lot done,” or “bad, I didn’t get anything done.”

However, Lyme disease put me into a time dilation where not only does it take longer to do things, but now I need to rest and sleep more.

Needless to say, I learned to reduce my demands on myself. I came to see that as long as I take care of the important things, it’s not so terrible if I don’t get much done in a given day. I slowly escaped the paradigm in which the purpose of each day – and of one’s life – is to accomplish as much as possible. I’m coming to see that there’s enough time in life and that life is not necessarily characterized by scarcity.

2) Pamper yourself.

Before getting Lyme disease, I got by without doing much for myself at all. I probably thought I did things for myself, but they were useful things that were more for my benefit than my enjoyment.

But once saddled with the pain and mental confusion of Lyme disease, I needed something strong to counteract the badness of my life and to keep my mind distracted and out of its strange Lyme patterns. I needed to do things that reliably boosted my happiness and gave me something to look forward to.

I watched the TV series The Office on DVD, read the Dykes to Watch Out For comic books (since I couldn’t concentrate enough to read regular books), ate yummy food, took bubble baths, and colored in coloring books. I learned to do things FOR myself, not just to demand things FROM myself.

3) Think about things how you want to think about them.

According to the usual paradigm, Lyme disease has been a terrible thing for me. I haven’t been able to do much for half a year, many of my organs are now damaged with toxins, and most painfully, people who are close to me judge me because they don’t understand what I’m going through.

But from my own perspective, Lyme disease been a wonderful learning opportunity, like a challenging graduate program that demands sustained effort, creative thinking and troubleshooting. My assignments are not written homework, but rather crises to survive, bacteria to eliminate, and symptoms to alleviate. Though I won’t get any letters after my name, “graduating” from Lyme disease will be something of which I am as proud of as any other degree.

4) Don’t worry what other people think about you/trust yourself. They’ll never know the whole situation, since you’re the only one who experiences your body and mind.

Lyme disease and its coinfections strongly affect the nervous system and can impair memory, concentration, and emotional control. To the person experiencing these symptoms, it might be obvious that the symptoms are due to Lyme disease, but an outside observer might not realize that infections can cause such extreme psychiatric symptoms. In my case, I encountered many situations in which I could tell Lyme disease was affecting me, but an outside observer might have thought I was having separate psychiatric problems.

For example, one time when I stopped my antibiotics, I developed such an altered response to stress that I broke down, shaking and crying, in my doctor’s office. Not being Lyme-literate, she suggested that I might have an anxiety disorder, but I knew from what I had read about Lyme and from how strange my body felt that I was experiencing Lyme disease symptoms, not a separate psychiatric condition. It was hard being told that my problems were in my head, but experience taught me to trust my own experiences and not to care if other people thought I had a mental condition.

As another example, I haven’t been able to work yet since getting Lyme. Sometimes people wonder why I can’t work, since I look well enough, but they can’t see the chronic pain, the excessive sleep need, the difficulty standing in place for more than a few seconds, and the low stress tolerance that I experience. Thus, I’ve learned not to care if people think that I’m malingering, since I can tell that instead, that I’m working hard to get better.

I’m coming to see that even in non-Lyme-related cases, other people probably don’t understand where I’m coming from, since they don’t experience my body, emotions, or history. In general, I don’t need to worry if people think badly of me without understanding the whole situation.

All in all, Lyme disease has probably been the hardest single experience of my life, but that’s what’s made it so growth-promoting for me. I hope that our culture will see chronic illness not as a sign that person is lazy, self-indulgent, or undesirable but as an indication that they’ve had the occasion to learn many important lessons.