Editor's Note: The original version of this essay was written by the founder of LymeBrave and posted to her personal website, www.susanpogorzelski.com.
Over the years, I've shared a lot of raw and vulnerable posts on my personal blog and social media pages, especially when it comes to the emotional toll that Lyme can take. That's where my passion has always been--helping people to heal emotionally.
I openly share my stories because I believe stories help us understand we're not alone, and that's the first step towards healing. But I have to be honest--being so vulnerable and open isn't easy. In fact, I can't tell you how many times my hands would shake as the mouse hovered above the "Publish" button.
But something began to change in me these past five years. As I continued to share my voice and speak up as part of my advocacy efforts for Lyme disease, I've found myself becoming less afraid to share my own truth. And now I know this to be true:
Lyme has taught me to be brave.
Yesterday, I watched this video from The Mighty about suicidal ideation, and it called to mind all those years before and after diagnosis where I struggled with my own mental health. It moved me to share what happened to me this past week privately on my personal Facebook page. For the first time in my life, I wasn't afraid of how my words would be perceived. I wasn't worried that anyone would think me lacking.
For the first time in my life, by admitting how weak I felt, I felt strong.
So many people showed up offering words of support and encouragement, and I heard their echo: "You're not alone. I've been there, too." A fellow Lyme friend encouraged me to share my words publicly, and I felt the familiar stirrings of fear. Because my page is my safe space, but here? On the blog? In public? What will you all think of me?
But I know this to also be true: I'm not alone. Especially with this disease, we've all been here, too.
So I'm sharing my story here now in case anyone needs to hear it. I hope you find strength in the words. I hope you know how brave you are. I hope you know you're never alone here.
OK. Here goes…
I was feeling suicidal this past week.
Man, that's hard to write, and I know it's probably taking most of you by surprise. I'm sorry if it's not easy to hear. I wish I could keep this to myself. I wish I could protect you from it because I know it's painful for you, too. But I've learned that holding onto this doesn't serve me or you. Not when help is needed the most.
What I need you to know is that I don't want to die. I don't. I love this life, and I'm grateful for it. I have a beautiful family, amazing friends, two adorable-as-hell dogs, and a life I'm generally proud of, though it could use some adjustments.
But that's the thing with suicidal ideation in the face of chronic illness: sometimes the pain is so overwhelming, you wonder if it will ever have an end. That's when you sink further and further into the darkness--when any escape from the suffering seems like relief. You pray for a solution. You pray for peace, no matter what that looks like. You pray even though you've lost your faith because you're begging for any miracle--to whoever or whatever will hear you--no matter how small.
I don't like to show you this side of me. And I usually don't. Which is why it's probably coming as a surprise that I'm sharing this so publicly now. I don't know--maybe I'm feeling brave or stupid today. You decide which one.
The thing is, I try to be positive because I know so many are suffering in their own way, and if I can help them, then maybe I still have a purpose here. I try to be cheerful because deep down inside, I am. Inside, that fire is still burning so strong--that fire that refuses to go out no matter how hard I cry.
But that darkness bubbles up to the surface and I can't see the light--can't see past the minute where I'm falling to my knees and curling up on the kitchen floor in tears. I can't see anything but the guilt for what a burden I've become, this uselessness because I'm unable to work, this lack of direction because I don't know what's left for me, this desperate desire to live so fully though it feels like I'm only existing. I don't know how to reconcile that--this burning passion for life with my reality of merely existing. It feels like I'm suffocating in my own skin, like my spirit is being squashed, and there's some part of me that feels like an end to this life would be freedom itself--freedom from this pain, from this disease--because I know--I know--that something comes next.
Sorry. Shit, I know how hard this is to hear, and I'm so, so sorry. I don't know why I'm being so honest today. Especially when I've already gotten through the worst of it and am feeling stronger again. That's the thing when you break down. You have a chance to build yourself back up.
I'm just really tired of building myself back up. Let's not break down for a while, okay? We're standing on some rocky ground here, and I'd like to hang out on top for a while...
Today, I'm stronger than the desperation that grips at my heart, stronger than the Lyme that is fucking up my brain and causing this psychosis. Tomorrow, I will be too--and the day after that, and the day after that. Because I can't tell you how many times that desperation has sung its same song over the years, and I'm still here. You hear that, Lyme? I'm still fucking here.
I'm not going anywhere.
Resources National Suicide Prevention Lifeline
Patients with Lyme Disease and other tick-borne infections are at risk of suicide due to the documented psychological manifestations of Lyme and accompanying decrease in quality of life. If you or someone you love is suffering from depression and/or suicidal ideation, please contact your physician immediately or call the National Suicide Prevention Lifeline (1-800-273-TALK).
Mental Health & Illness: Lyme Disease
A collection of articles by top Lyme physician Dr. Robert Bransfield as published in the Lyme Alliance Newsletter. These articles focus on how Lyme affects mental health as evidenced in neuropsychiatric symptoms that manifest themselves as familiarly-labeled psychiatric disorders, specifically in the late or chronic stage of the disease. Read his Neuropsychiatric Assessment of Lyme Disease to learn more.