A Reality of Lyme Disease We Need to Talk About

This is hard to talk about and even harder for family members and friends of people with Lyme disease to hear. It’s depressing. It’s dark. But it’s real and we need to talk about it: Lyme patients are dying by suicide.

Before I went down the deep rabbit hole of Lyme disease, I was oblivious to the suffering of those with any kind of chronic pain or illness. I wasn’t particularly understanding, if only because I had no personal experience with which to frame that understanding. I hesitated to publish this piece, worried how anyone unfamiliar with the mental anguish of Lyme disease might judge me henceforth. Even now, I worry about future employers or new acquaintances reading this and judging me unfairly. But therein lies the problem. The stigma around suicide and society’s unwillingness to acknowledge such a dark and scary topic prevents those contemplating it from discussing it openly and thus seeking the help they need.

Lyme disease rocked my world in the spring of 2009. I had just turned 40 and had a fabulous, fun birthday party. The day after that party my life changed drastically, and it hasn’t been the same since. While I had been feeling unwell intermittently up to that day, the late night and alcohol exacerbated the illness that had clearly been lying dormant in my body. The weeks after that party are a blur of Bell’s Palsy (paralyzed face), debilitating insomnia, vomiting, 104 degree fevers, more medicine than I can remember and a host of other symptoms too numerous to list. Diagnosed originally with lupus and fibromyalgia, I would spend the next two years visiting upwards of 25 doctors to get an answer: Lyme disease, the co-infection babesiosis, debilitating adrenal fatigue and a now reactivated Epstein-Barr virus infection.

These illnesses brought on a depression so dark and heavy I couldn’t breathe. Depression is depressing, isn’t that the truth? I had never been a depressed person, but the unrelenting insomnia and inflammation in my brain caused by the Lyme bacteria led me down a dark and frightening path. There was a night in the early stages of the illness so physically painful that I felt my only reprieve was suicide. That was the first time that thought crossed my mind, and I truly mean it “crossed” my mind. It didn’t come from the core of my true being but rather, it was like a dark demon visiting my soul whispering the suicide option in my ear.

The sicker I got, the more that demon came to visit. Eventually the demon came and never left and those suicidal thoughts echoed in my brain every day. This is what if feels like to have suicidal ideation (unusual preoccupation with suicide) with Lyme disease. The Lyme bacteria (Borrelia Burgdorferi) invade the brain, affecting its emotional center, and along with depression, anxiety, paranoia and Lyme rage come relentless suicidal thoughts. Thoughts I was powerless to stop. It was a heavy pressure that weighed constantly on the soul. The suicidal thoughts weren’t a conscious, “I want to kill myself.” Instead, there was that dark voice I didn’t even recognize that haunted and taunted, whispering constantly, “Just do it.” And it was so hard to resist because there was so much pain, all day every day, compounded by a deep physical depression that had no end. Dying by suicide truly seemed the better option.

Often when I woke in the morning, before I even opened my eyes, the first voice that whispered to me was, “How will I kill myself today?” I would ponder the various ways I could achieve obliteration and a strange comfort would wash over me in knowing I had an out. There were many days I wanted to yield to this urge. It would be so easy to just give in and not feel the pain in every nook and cranny of my body.

It takes a very strong person to resist these unrelenting thoughts when hanging on by a mental thread, and the body is so weak, in so much pain and fighting for its life. Add to that the pressure of outside influences like a doctor or family members who don’t believe you’re really “that sick,” and what you get is a patient who eventually follows through and heeds that dark voice.

In order to survive, Lyme patients need doctors and family members who will actually believe them, validate how sick they are, constantly remind them of who they were before they got sick, and that it is, indeed, a serious bacterial infection in their brain that is causing their depression. The patient needs people around her who validate her need to be treated, who will give her support while she is treated, who will remind her that she is loved, that her life is worth living and that she is valuable.

Even during treatment, my physical symptoms and suicidal thoughts intensified. Just when I was in the most pain ever, I had to dig even deeper to keep going. It felt like the demon in my brain challenging me to fight with everything I had left. But I found a way to keep the pressure of that dark voice out. I am one of the “lucky” ones because I had friends and family, a knowledgeable doctor and a therapist whose love and support kept a pinprick of light shining through the darkness. I grabbed on to that light and after years of medicine, treatment and healing the suicidal thoughts are now gone.

If you or someone you love has Lyme disease and are having relentless, suicidal thoughts, reach out to other patients and Lyme disease support groups. Find a knowledgeable therapist to speak to and a Lyme literate medical professional to treat you. Don’t try to fight it alone. If family members and friends don’t understand, don’t waste precious energy trying to make them. This is a fight for your life. Find the people who will listen, who understand what you are experiencing and who will remind you that your life is worth living, because it is. I was in the deepest, darkest place and have come out the other side; if you can just hang on for another second, and then another one, and keep fighting the darkness, there will be light.

We need to talk about this because, in the throes of this illness, Lyme patients are dying by suicide.

Disclaimers:

I am not a medical professional. I am a Lyme patient and I am sharing my own experience. If you have Lyme disease or think you have Lyme disease and are experiencing suicidal thoughts, please consult a Lyme literate doctor and/or therapist.

Resources:

• “Doctors Agree Lyme Disease Patients At-Risk for Suicide Are Under-Recognized Group”  by Dr. Daniel Cameron
• PA Lyme Resource Network (for support in Pennsylvania)
• Lyme Disease Support Group List
• Lyme Literate Doctor Referrals

Follow this journey on Lymeadvokit.