I Have Lyme Disease & These Are The 7 Things I Want Those Close To Me To Understand
Last September, I was diagnosed with chronic Lyme disease and co-infections. I'd spent about a year seeing a number of doctors about my bladder pain, involuntary muscle movements, irregular heartbeat, and other symptoms. Most told me that it was psychological, that I had somehow brought it on myself, or that I had an incurable syndrome like interstitial cystitis that I just had to live with.
Then, finally, a functional medicine doctor had me fill out the Horowitz Lyme-MSIDS Questionnaire and complete a DNA Connexions test. These diagnostic tools showed that I was carrying bacteria known to cause Lyme and co-infections and had symptoms consistent with the diagnosis. Since no single test is completely definitive, I got more testing through ArminLabs, which detected Lyme antibodies, and that helped me feel more confident. But I still struggle with the fear that it really is in my head, as many Lyme patients do. (More on that later.)
What I can say is that Lyme treatments have helped me. As with some other chronic Lyme patients, antibiotics (which are more effective for acute, short-term Lyme) didn't help me; they made me worse. I ultimately found healing through a combination of alternative western therapies like ozone and UV light, indigenous plant medicines like kambo, holistic treatments like acupuncture and breath work, and natural supplements and herbs. I've made an effort to care for my emotional and spiritual self as well as the physical, and though I'm not completely better, I'm confident I will be. I've made so much progress in just a few months and seen some positive life changes along with it.
It's difficult for me to talk about Lyme disease with my loved ones because it's hard to understand if you haven't been through it. The way Lyme takes over the entire body and brain rivals few other illnesses. If you have a loved one with Lyme, it's important to appreciate that just because you don't understand what they're going through doesn't mean they're not going through it. You'll probably never quite get it, but you don't need to — all you need to do is believe them.
Here are some things I wish people understood about Lyme disease, because if they did, they could support all of us better.
1. It's Not In Our Heads
If you know someone with Lyme disease, chances are they've been told at some point that the disease is in their heads — or some variation of that, like "it's anxiety" or "you manifested it." In fact, they may have gone years without a diagnosis because of this misconception.
Constantly being gaslighted about your own body and shamed simply for advocating for your health takes a toll on you. You start to see yourself as the emotionally unstable, unreliable, weak person that doctors and perhaps loved ones have made you out to be.
You may believe you're helping someone with Lyme find some control over the situation by suggesting there's a psychological component to their symptoms. But when you make this suggestion, you're not making it in isolation. Chances are, you're reactivating an extensive and painful series of memories of people dismissing their concerns.
Even if you don't intend it, you're also trivializing their illness by implying that it would go away if only they thought more positively. What we're dealing with is much bigger than that, and we deserve sympathy for it.
2. We're Suffering More Than We Let On
While other symptoms of mine may appear more serious, my most debilitating ones are the constant feeling of a brick wall in the middle of my brain, making the most simple tasks feel overwhelming, and the all-consuming rage that hits me out of nowhere. These are difficult to describe in a way people sympathize with because they don't involve physical pain, yet they can be so much worse. But people don't see these symptoms or hear about them, so they assume I'm fine.
People see me as someone who's keeping it all together. What they don't realize is that with every work assignment I turn in, every flight I catch, and every tweet I post, I'm suffering inside. If your loved one with Lyme is managing to hold down a job and an active social life, that's not a testament to how trivial the illness is. It's a testament to how strong they are.
Many symptoms of Lyme are invisible, which can lead people to doubt that it's really that bad or suspect us of exaggerating. But trust me: This disease is worse than anyone could exaggerate even if they tried.
3. Our Symptoms Are Not Within Our Control, Even The Psychological Ones
Like some other Lyme patients, I suffer from an exaggerated startle response. If something wakes me up, it takes hours for my heart rate to even begin to slow down. When I started experiencing this at night, my partner would tell me to just not get so wound up and go back to sleep. I would have loved to! But I was as frustrated with this symptom as him. I tried meditation, hypnosis, and deep breathing, but nothing really worked, because it was a physical, automatic reaction.
Lyme causes a number of psychological symptoms, from depression and anxiety to psychosis and derealization, which may appear as if they're within our control. But we can only control them so much when there is literally a parasite in our brains bringing them about.
I don't mean to be defeatist, because various solutions are worth a try, but if they don't work, we are truly not to blame. Our symptoms may be frustrating to others, but we're not the enemy here.
4. We're Doing Our Best
Lyme makes you do some thoughtless things. We forget stuff; we express ourselves poorly; we explode at people over nothing. And if it's too much for you, you don't have to expose yourself to it.
But at least trust that it's not us — that we would do better if we could. Behind the facade of our illness, there are people desperate to be heard, desperate to be seen, desperate to love and be loved, desperate for their life back.
And when our true selves get lost and Lyme takes over, we are still doing our best. Even when it looks like someone else's worst, it's our best.
5. We Have Been Through A LOT
While emotions aren't the cause of our symptoms, Lyme disease can certainly create plenty of emotional trauma. Imagine going about your life and then suddenly being unable to do the things you love or connect with the people you love. Then imagine being told you're experiencing this because you're dramatic, delusional, or "too sensitive."
Imagine spending tons of time and money going from doctor to doctor, only to be told you are to blame, growing sicker and sicker with nobody able to help you. Then, imagine finally getting diagnosed, but then having to spend even more time and money on treatments, all while suffering severe brain fog, fatigue, pain, and/or mental illness.
Many of us go years without being able to think clearly or feel rested or experience a moment without pain. Even if we're able to get properly diagnosed and treated, this experience in of itself can be traumatic. So, be sympathetic toward people with Lyme, and perhaps even express admiration for all they've withstood. They've been dealt some difficult cards.
6. Many Of Us Feel Like Frauds
Lyme testing is notoriously difficult, as the conventional ELISA and Western Blot tests often produce false negatives. Yet more sensitive tests like those from DNA Connexions can be misleading as well, since you can carry Lyme-causing bacteria without it being the source of your symptoms.
Because of the complexity of Lyme testing, many of us never will be 100 percent sure of our diagnosis. That's just how it is. But if our doctors have determined based on a combination of symptoms, medical history, and test results that we have Lyme, that is enough for a diagnosis — even the CDC agrees on this.
On top of that, Lyme presents in many different ways. It's most commonly described as involving joint pain, rashes, fatigue, and brain fog, but not everyone has all these symptoms, and many have others like migraines, digestive problems, respiratory issues, neck or back stiffness, numbness and tingling sensations, and much more. Most chronic Lyme patients don't remember getting tick bites, and very few get the "bulls eye rash" characteristic of the disease.
The misconception that all Lyme patients remember tick bites and have the most well-known symptoms can make us feel like frauds if we don't. So, once again, don't doubt anyone's lived experience of Lyme. This contributes to the gaslighting we've already faced and often do to ourselves. Just because someone does not match your conception of a Lyme patient doesn't mean they don't have it.
7. There Is A Light At The End Of The Tunnel
Lyme disease is a serious illness, and it can last for years. There's no sugar coating that. But many people do recover. And nowadays, there are endless treatment options to try.
Even when it felt like I'd tried everything out there, I was so glad I had people around me to remind me I had nowhere near exhausted the options. Their encouragement wasn't just uplifting; it was useful. There were times I was about to give up but just gave one more thing a try after someone suggested it, and it made a huge difference.
Because knowledge of chronic Lyme disease is just starting to make it to the mainstream, many of us start off in the dark about treatment options. Doctors don't always help us stay positive, particularly conventional western doctors who are only trained in a small subset of treatments. So, it can be enormously helpful for our loved ones to reassure us that there is a light at the end of the tunnel.
In fact, healing from Lyme can be an experience of transformation and personal growth. I used to hate hearing that, because it seemed to minimize my pain, but it turned out to be correct. Perhaps the most exasperating piece of advice I received was to try to enjoy this journey, but while I would never call it easy, I've found profoundly meaningful moments by incorporating spiritual healing modalities.
One silver lining to my Lyme disease is that it's brought me closer to some people in my life (though, trust me, not all). With a disease that's so poorly understood, someone who listens and makes an effort to help, no questions asked, can make a huge impact. I'm a firm believer that love is medicine — you just have to be willing to give people the kind of love they need.