Surviving the Hidden Pain of Lyme Disease


Editor’s note: If you experience suicidal thoughts or have lost someone to suicide, the following post could be potentially triggering. You can contact the Crisis Text Line by texting “START” to 741-741.

I’ve never written these words before. I’ve spoken them out loud to family, wrapped them up in fiction for my book, alluded to them in passing when I thought someone needed to hear them: the reason why I stayed.

But I’ve never written them down before — not concretely, not completely, not like this.

I need to give you some background, so you understand me before you understand what I’m about to say. I tend to see life as an artist — through all of its sorrows and all of its pain, there’s always beauty there. I feel the hum of hope in every ripple of leaves, every jangle of a dog’s collar, every smile from a stranger. I experience life in depth — everything has meaning, everything has a connection. Everything is teeming with energy, with life. This is a small glimpse into my view of the world, a little piece of my belief, a snapshot of who I am.

Here’s another: all my life, I’ve had a fascination with death. No, fascination is the wrong word. Fascination brings to mind being awe-struck, preoccupied, a morbidity. What I had was an understanding — an innate knowledge devoid of any religion that after this life was over, there would be something else. But first, you have to live this life as fully, meaningfully, and joyfully as possible. The key, I’ve always believed, was to live.

Which is why, when I got sick, the hardest part for me to endure was the limbo I suddenly found myself in. This wasn’t living — this was getting through the day, and for what? For more days spent sleeping in bed because I couldn’t lift my head from the pillow; more pain that made it hurt to even move; more anxiety that kept me sequestered in my house. More days like this.

I know what desperation sounds like — I’ve heard its song before. It sounds like relief from the pain, from the fatigue, from the half-life you’re living. It sounds like freedom — not yours, but for others — the burden you’ve placed on them for having to care for you, day in and day out, worrying and wondering if the next day will bring more of the same.

I don’t welcome death. I’m not ready for it; there is still too much to do. But I’m tired. I’m tired. I’m so damn tired.

I’ve fallen through the cracks in this life, everything I’ve built crumbling around me, and though I try and try and try to rebuild, it’s never enough. I feel like a financial burden on my family. I feel like a broken record of melancholy to my friends. And this guilt and a longing to be something more — to be even a fraction of who I once was — gnaws at my spirit every single day.

I was the girl who found joy in life, not fear. I was the girl who traveled, who spent a month on her own in France hauling logs down a medieval mountain and writing by the fireside. I was the girl who met challenges head-on, who faced doubt with determination, who pursued dreams with passion.

Some days, I see her — that girl who explored the world and led the charge. But she’s so buried under the weight of this disease, I wonder if she’ll ever return for good or if she’s now merely a shadow of my past. This disease keeps breaking me while I… I keep trying to gather up the pieces, trying to reassemble them to form something new and better and stronger. But to what end? To what end.

Here’s the reality of a life with Lyme: Never mind the physical symptoms — I’ve spoken of that hell before. And the psychological impact, well… you’re getting a glimpse of that here, but it goes so much deeper. This — this struggle to physically survive in a world that thrives on the healthy and forsakes the sick is what takes its toll.

I’m caught in limbo waiting for a disability hearing to provide some financial relief and in the meantime, I’m on government assistance. I’d be ashamed, as we’re conditioned to be, if I had any pride left. But life is about survival now. I don’t get to make that choice anymore.

If I get a job, I don’t know how long I’ll last before I put my health in jeopardy again. Even now, it’s hard to make it through the day, and for every good health day I have, there’s a handful of bad to follow. I’ve already relapsed once because I pushed myself beyond my limitations. I fought and clawed my way back to barely functioning these past two years, and I’m grateful for it. But I don’t know if I’ll have the strength to survive it again.

If I do push through and get a job despite the limitations of this illness, it would mean I’d lose my healthcare and food benefits. My doctor appointments and tests are expensive, but at least most of the medicines that are helping me get better, however slow and steady it’s been, are provided for. It’s an impossible choice now. I feel like I’ll lose either way.

I’m going to lose my house — this house where I have neighbors who understand me, who have been here to help me, where I feel like I can breathe despite how this illness tries to crush my spirit. I was granted a moratorium that’s provided financial relief these past two years, but it will be up in August. I won’t get a disability hearing until at least January. I can go home — I know I can always go home. But this home has been my sanctuary through all of this, my last vestige of independence. I don’t know what will become of me if I let it go.

I feel like I can’t win. No matter how hard I try to build a self-sustaining life for myself, no matter how hard I work to create something that gives others hope, I just can’t win. And I don’t know why. What have I done in this life that has brought me here? Why, five years later, am I still struggling to get better, still struggling to survive? I don’t understand it. I don’t understand. All I’ve ever tried to be is good — to make the right decisions, to be kind to others, to work hard and with dignity and live a positive life. But it’s hard to be positive now. It’s hard to have courage and hope because that desperation is singing a song I know too well again, begging for any relief from this pain.

I don’t know what my life will look like tomorrow. I’m just struggling to get past tonight. Maybe that’s why I’m writing this, baring my struggles and soul for the world to judge. Maybe that’s all this is — a step towards healing. Because if I have a place to put this pain — somewhere outside of me so it doesn’t rot the soul — then maybe tomorrow will be different. Maybe I’ll hear a different song. Maybe it’ll whisper a different story.

Here, I’ll start right now:

There once was a girl named Susan, and she survived.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741. Head here for a list of crisis centers around the world.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Grandfailure

TOPICS
JOIN THE CONVERSATION

Related to Lyme Disease

portrait of a woman with drawn flowers around her head

23 Ways to Imagine What It's Like to Have Lyme Disease

Dealing with Lyme disease can be challenging enough based on the complex symptoms alone. What makes it 10 times more challenging, though, is the fact that (for most with Lyme disease) our symptoms are invisible. We try to describe what we’re going through, but the words get lost in translation as the hearer sees us as normal, healthy individuals. How can [...]
woman receiving an infusion in the doctor's office

The Less-Than-Pleasant Truth About My Life With Lyme Disease

I’m so tired of fighting. Fighting to do more than I’m able to do, fighting to get up in the morning, fighting for my life within my own body. I’ve been sick for over two years. When I really look at it, I’ve only ever really had one good year of health. Before that I [...]

Why Ableism Is Such a Huge Issue for Those With Illnesses or Disabilities

The other day someone I’ve known for a long time read my blog. I never discussed much about Lyme disease with him, so I wasn’t surprised that he didn’t really know how to respond after reading it. However, what he did say made me think. He told me he thought it was great that I’m able to [...]
"Univited" by Lysa TerKeurst

How Lysa TerKeurst's Book 'Uninvited' Relates to Life With an Illness

The phrase, “I don’t want my normal to be snatched away,” hit me straight to the heart while I was reading, “Uninvited,” by Lysa TerKeurst. Although she was talking about relationships, I felt like it was speaking to me. This journey of chronic Lyme’s disease and other co-infections has definitely changed “normal” for me, and [...]