It Sucks In Here: Understanding Lyme-Related Mental Illness

Lyme-related depression and anxiety can seem like elusive concepts to people that have never experienced them. I mean, it must be weird to watch a healthy-looking woman not function properly, especially when it seems like she has a choice in the matter.

“Why won’t she just get out of bed and do something? She’s been under the sheets all day.”

“There she goes again … freaking out. She says she can’t breathe, but I’m watching her do it right now.”

“When will she stop worrying about every little thing? She has a great life. She needs to appreciate it more.”

I don’t blame healthy people for not getting me. Sure, it can be frustrating when my illness is not understood, but I can’t negatively judge others for NOT feeling what I feel. That was a confusing sentence. But you get it, right? I can’t blame healthy people for not stepping inside my body and strapping on my nervous system. In fact, I wouldn’t want them to. It sucks in here. A lot.

In an effort to help others understand the wild world of Lyme-related mental illness, I’ve decided to blogcast my story. So, here goes …

The panic came first. Like torrential rain. The sky opened up one day and BOOM. If you’ve ever been in the midst of a scary situation, if you’ve ever been mugged or been dangerously close to falling off a really high cliff, that’s the feeling that flooded my body … except it happened when I was listening to a story in my sixth grade classroom. Nothing situational sparked the fight or flight response. It just appeared out of nowhere. I couldn’t catch my breath, my pulse was racing and I felt like I was spiraling towards a horrific death. When this kind of thing happens you wonder about your sanity. Like if you started hearing voices with no people in front of you, you might ask yourself: Am I okay? Which I did. And the answer was ‘No.’

The torrential rain worsened. I accepted my mental move to storm city with grace, but it was hard. Bouts of disassociation soon followed the panic. I would walk into my own home, visually recognize it, but be unable to feel a connection to it. All of the memories to the space where my family and I resided were in my head, but the feelings weren’t accessible. The comfort I usually got from sprawling out on the couch had suddenly disappeared. It was no longer my couch.

And, unfortunately, the disassociation spread. It spread into my body. I began to look at myself in the mirror and see “just a person.” Not Sarah. It wasn’t me. Like some protagonist in an avant-garde horror film, I wasn’t in my body. In fact, I didn’t know where I was. I just knew I wasn’t where I was supposed to be.

The anxiety and depression crept in during the midst of all this. My chest cavity began to grow a ten pound bowling ball that still sits there today. Carrying around that weight at twelve years old was a difficult adjustment, and sent me to bed frequently. After full days with that “giant, new friend,” I slept. And slept. Sometimes I didn’t want to wake up because it was too hard to do stuff with the bowling ball attached. I frequently prayed to get my life-before-the-ball back. I would try to remember feeling light and free, enjoying myself at social gatherings and after school activities … not struggling through them. I began to worry constantly about stuff I’d never thought about before. I developed phobias about being poisoned, dying of rare diseases, falling off of bridges and burning in airplane crashes. These phobias invaded my dreams that always ended with me awakening in a pool of my own sweat.

I didn’t want anyone to know about my invisible bowling ball, weirdo worrying or torrential panic, so I exerted more and more energy to appear normal. In fact, I tried extra hard to be flirty, goofy and aloof. For a year or so I played the role of “a ditzy girl” in an effort to disguise my pain.

Collage made in high school
Collage I made in 1997

High school played out in a similar way. When my parents discovered what was going on, therapists were introduced, medications were prescribed and I was watched more diligently. I developed a nasty habit of cutting myself in an effort to “feel again.” I wanted to get back into my body so badly. I wanted a ticket home. I hated feeling so disconnected. I wanted to bleed out my pain, or at least mask it with a different, tangible kind. The cutting led to a suicide watch that I tried to explain was completely unnecessary. But, who’s going to listen to someone with an invisible bowling ball growing out of her chest?

My body was so profoundly noisy, I didn’t notice what could have been an incredibly telling symptom of Lyme for a long time. Once I recognized it, I didn’t share it with anyone because I figured it was the true sign of a crazy person. The ants invaded slowly. They crawled up and down my nerves at all hours of the day. They crawled into my head, my heart, my stomach, my arms and legs. I had no idea that what I was feeling was actually nerve irritation from the spirochetes (bacteria that causes Lyme). Instead, I figured I was headed for Nurse Ratched’s ward in One Flew Over the Cuckoo’s Nest. And nobody wants to be HER patient. I didn’t share this symptom with anyone, in fact, until I received my diagnosis at 32 years old. For me, this was the scariest of all symptoms. In the back of my mind I figured admitting to ants crawling all over my body would be what finally got me committed to a psych ward. People feel that kind of stuff when they are schizophrenic or on a bad trip. So I dealt with it.

And I dealt with it. And I dealt with it. I’m lucky that I finally found a medication that muted some of my symptoms in college. But it was definitely a half-mute, like what you do when your girlfriend asks you to turn down the football game. It still helped me to function though: the meds in combination with a kick-ass sense of self-awareness that I cultivated over years of therapy and journaling.

Smiling through pain at 15 years old
Smiling through the pain at 15 years old

My self-awareness is what helped me navigate through a variety of incorrect diagnoses that got smacked onto my medical record like big ugly stickers at the dentist’s office. Let’s review them, shall we? There was major depressive disordergeneralized anxiety disorder, panic disorderborderline personality disorderbipolar II disorderspecific phobiapremenstrual dysphoric disorder, and the ever popular seasonal affective disorder. As you can probably imagine, I’m not big on mental diagnoses anymore. In fact, I try to stay as far away as possible. When doctors give you these kind of diagnoses, be careful because you get a big, fat scarlet “A” scratched across your forehead. It’s a packaged deal. You’ll never go into an office again with “just an ear ache.” You will be the “mentally unstable girl with an ear ache” … so you will be questioned about whether or not what you really feel is ear pain. And you can pretty much apply this situation to any complaint you may have in the future.

So you can imagine how my illness played out. Years of “well it seems like you are under a lot of stress, Ms. Herbert. Have you seen a psychiatrist recently? I have the name of one you’d really like.” Years of symptoms that kept accumulating like dirty cockroaches that I’d sweep under my bed. Years of doctors treating me like “a young woman with a pretty rough past.” Years of crying in exam rooms with no answers. Years of hitting a big. fat. wall. All this, while I was acting as a fantastic breeding ground for Borrelia Burgdorferi that would one day show up clear as fucking day on a blood culture.

My body is now a battle ground. I shove antibiotics, herbs, supplements, homeopathics and other prescription drugs into my mouth on a daily basis. Some of them kill the bacteria, which release toxins and make my mental health much worse. These drugs increase the crawling sensation, the panic, the anxiety and depression. They also turn on a massive fog generator that coats my brain in a thick mist. The mist makes me forget basic words like “spoon” and “umbrella.” It takes away my short-term memory and impairs my long-term memory as well. When the generator is on I can’t read, or follow plot lines on television very well. It obstructs basic knowledge I can usually access like “Where am I going?” or “What am I doing right now?”

It’s like I’m driving a car across the Golden Gate Bridge on the foggiest day of the year. I’m squinting. I’m looking for cues that I’m moving in the right direction and not hitting the vehicle in front of me. I can’t see, but I need to keep trying in order to stay safe. 

Sometimes all I want to do is hide under the covers with my bowling ball, my fog generator and my ants. I don’t want to get up and worry about random shit that only happens in nightmares. Sometimes I need to complain about the battle going on inside of me. My internal warrior is incredibly proactive, so advice like “try to appreciate the good things in your life,” or “get up and try to do more stuff” doesn’t feel appropriate or helpful. I’ll never forget when I’d finally mustered up the courage to tell one of my friends in high school about my struggles. She responded with “you’re too pretty to feel that way.” She didn’t know any better … I know. But those words stung. And most Lyme patients have been and will continue to be stung throughout their battles, which is why they might get extra sensitive and angry sometimes.

No more hiding : )
No more hiding : )

The most helpful thing you can possibly do is listen. Listen like you mean it, without looking at a clock or chiming in with a story about your friend’s friend that has lupus or cancer. You won’t be able to feel what we feel, but we will love and appreciate every second you spend with your hand on ours focused on what we are saying. And we want to be there for you too. Even on days when we can’t. We want to get out of bed. We want to breathe like normal people. We want to appreciate all of the beautiful things in our lives. It’s just hard sometimes. Because it sucks in here.

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10 thoughts on “It Sucks In Here: Understanding Lyme-Related Mental Illness

  1. Wow. I deeply appreciate your honest, candid, and unfeigned essay.
    I’ve been ‘early diagnosed’ thanks to a bulls eye, but failed the blood tests, mishandled by doctors, but on a steady course now, I think.
    I have four young children who struggle to understand what this is all about. Ok. . .I’m still learning a lot myself while trying not to go chronic.
    I’ll check out the rest of your posts. I really enjoy your openness.

    Like

    • Thank you for such a nice comment. I’m so glad to hear that you were diagnosed early … such a better prognosis! I can’t imagine trying to deal with everything while juggling four children. My heart goes out to you. I hope it isn’t too difficult. Happy healing!

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  2. Sarah, thank you for your story. It breaks my heart to read all of the suffering you went through. My husband was diagnosed with Lyme early this summer. We’re not sure how long he’s had it, but he did have a test two years ago after pulling a tick off (they did the blood test that day, dummies), that came back positive for two of the antibodies. Since it wasn’t three antibodies, which was what was required at the time, we never received a call about the tests. Not knowing much about Lyme, and with no bull’s eye rash present, we assumed everything was fine. Point is, he would have had to have had Lyme even before this tick.

    All of these symptoms you are describing are identical to symptoms he has. Most notable being the anxiety and depression, and the constant “pulsing” feeling, which he describes as “buzzing”. Another major problem for him are heart palpitations and heart pain, tachycardia, and raised blood pressure despite being on a gluten free, sugar free, dairy free diet.

    I can’t tell you how many ER trips we’ve made because of the heart pain and persistent anxiety episodes and attacks, and not once did a doctor suggest Lyme. We were sent away every time with a diagnosis of anxiety and a suggestion to see a cardiologist and a psych doctor.

    Fast forward past a million doctors and tests. We miraculously received a month covered by insurance of the IV rocephin through an infectious disease doctor. He felt fantastic during that month, and a week after symptoms returned. He is now seeing an LLMD and taking Coro-calm, MC-BB-2, Tri-Fortify Orange, and Transfer Factor LymPlus for now, as well as Psy-Stabil for anxiety. I saw in your plan you take the MC-BB-2 and Psy-Stabil, but have you heard of the others? Just curious! We don’t know how well they’re going to work yet, but so far he said he’s been feeling a little bit better.

    I wish you the best of luck on your journey, and look forward to reading new posts. My heart goes out to you.

    Liked by 1 person

    • Thanks for sharing. My heart goes out to you and your husband. Lyme is a rough road for those stricken with the disease as well as our caretakers. I actually am using coro-calm now. Funny you mentioned that. I also take the TF Lyme plus (should probably update my plan). I’ve tried a lot of herbs that have really helped me with managing symptoms. The tachycardia, hypertension and irregular heartbeats are the scariest by far. I know the feeling of being sent away … it’s incredibly frustrating after you’ve watched your pulse skyrocket. I’ve found that increasing my detox methods, as well as olive leaf extract have helped with my heart issues. In the end it’s just inflammation from toxins. I wish you and your husband the best. No one deserves to go through this. Please don’t hesitate to get in contact if you ever have questions or want to compare data : )
      Sarah

      Like

  3. My sister is currently struggling with chronic Lyme. Mentally and physically. She has lost so much weigh and everyday is a struggle. Never know what to say to someone going through so much that I will never feel in a lifetime (hopefully).

    Liked by 1 person

  4. Living with a hidden disability or chronic illness often feels like double jeopardy. But you are not alone. Those of us who also struggle with a hidden chronic illness know exactly what you’re going through. What I liked about your blog is that it’s devoid of any self-doubt. You are definitely a warrior. Hang in there. You have brothers and sisters who understand your pain and support you. Warmest regards,
    Joanna Charnas,
    Author, Living Well with Chronic Illness

    Like

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