With Lyme, it's hard to find someone who will treat you. There's a constant onslaught of doubts being pelted at us as a group, even as individuals, doubts about whether chronic Lyme exists, doubts about whether the treatments are valid and effective, doubts about whether each of us actually has the disease or whether we have some psychological need to create disease where none was before.
It requires an incredible amount of resolve and self-assuredness to know what your reality is, to be sure that you are sick and that your sickness is real, and that people who doubt you are WRONG.
I am amazed by all of you--by your trust in your own experiences. For eleven years, from age ten to twenty-one, I had Lyme, but after a brief treatment when I first manifested the classic rash (erythema migrans), it was forgotten and it took me those full eleven years to assert myself and to insist to my parents and doctors that I was still sick and needed treatment.
Granted, to become sick at age ten is very different from becoming sick at age thirty or fifty. You don't have a lifetime of wellness to compare your new illness to. You don't have confidence, or certainty in yourself. You defer to the adults around you.
But even so, after I was re-diagnosed with Lyme at age twenty-one, things were complicated. I was treated with oral and intravenous antibiotics for a few months, and then I fell back into a state where I didn't believe my own experience of my body, and I started to wonder if maybe I didn't have Lyme after all (my blood tests were consistently negative--though my neurological scans and other tests were markedly abnormal) and I stopped treatment, threw in the towel, and stopped discussing Lyme.
I wouldn't talk about it, even with my family.
A few months ago, right before I turned thirty, the movie "Under Our Skin" came out, and the realization that I had been sick, was still sick pulsed through my veins. And yet it took me until a few weeks ago to really, truly believe it, and throw myself into treatment. Now my blood tests are positive again.
Now I want to get better. Twenty years after the tick bite.
I must beg a few things of you, Lyme community.
1. Know your body, your reality. If you're really sick, insist on getting treatment. Find an LLMD and get better.
2. Don't be afraid to get better. Even if you've been sick for years or decades, health is the goal. Even if you've gotten used to being sick, to having sickness prop you up like an ugly crutch, try to get better. For example, I realized today that sickness is an excuse for me. Yes, it's a real excuse, not one I've invented, and I never lie and say I'm sicker than I am, but it's also comforting to know that sickness is a good explanation for why I'm thirty and haven't started my career yet, for why I sometimes have a messy home, etc. Again--it's all true, but it's comforting to have the excuse anyway. If that's how it feels for you, too, get past that. Get better.
3. Try to avoid seeking treatments that don't work. I'm thinking of people I have met who do expensive, bizarre things to get better. Unless the treatment has been researched and recommended, or at least has proven to be successful by a great number of anecdotes, proceed with caution. I say this for a few reasons. One is that you might end up spending tens of thousands of dollars on things that don't even work. Another is that we Lymies have to fight really hard to seem sane and not hypochondriacal, like people who get a kick out of being sick, and the weirder we are, the harder it is to be believed by the medical community.
4. To continue from point 3, try HARD to seem very level-headed and practical, even if your Lyme is the kind that makes you feel the opposite way a lot of the time. We must, must, must join together and not come across as flaky. People don't believe us. Doctors lose their licenses for treating us. The less floopy we are, the more we can further our cause.
5. Please do not blame every problem in your life on the Lyme. I've met people who blame the silliest things on Lyme disease. While it's true that Lyme can cause a medley of strange, transient symptoms, there are lots of weird things that happen to you and your body that have nothing to do with Lyme, or maybe it's not the Lyme specifically, but a side effect from your medications, or the psychological fallout from having a chronic disease. If you cry less than you used to, it's probably not the Lyme disease. If you no longer enjoy the taste of broccoli, it's probably not the Lyme disease. Etc. When you blame every last problem in your life on Lyme, people might begin to doubt whether you have it at all. I'm not doubting you. But others might.
6. Finally, live your life. Yes, you are very sick. Yes, it's going to take a long time to get better. But don't make a career out of having Lyme disease (unless you're an activist or a medical professional, or something like that, of course). Try to have fun when you can, try to nurture the love in your life, try to do whatever you can, whenever you can. You'll feel better this way.
So, dear Lymies. I say all this because I've come to notice over the years that some of us get carried away with it, and while this is their right, it hurts the cause. It's true of a lot of chronic illnesses that some sufferers get carried away. But because Lyme is so doubted and controversial to begin with, it's very crucial that we put on a good face for the public. It's unfair. It's totally, wildly, ridiculously unfair that we have to have an illness very few even believe in.
So let's fight this fight. And let's start by being true to ourselves, to our bodies, to our experiences, and to our lives.
