When Lyme Disease Leads to Depression

Sometimes I stop writing blog posts. I stop answering calls or text messages. I don’t go outside. I avoid social media. Sometimes, I avoid social. So many things I wish you knew about my disease… the faltering of my mental health is not low on that long list.

Sometimes, Lyme makes me sad. It pulls, and paws, and drags me under until I am so disoriented by the darkness, I just stop moving and welcome the rest. Depression is not a powerful force, not a fierce warrior. It is not strategic and doesn’t attack. It is, instead, a slow sluggish thing. A blob that slithers and slips and lumbers onto my back when I’m not looking. Its only super power? Sheer weight.

The heaviness presses until tears fall and angry, fearful, frustrated words spill out. I want to, but cannot contain them. The burden is too much. I cry, talk to myself, my God, friends who know. I am prickly, easily irritated in ways I don’t understand. Thoughts, that should maybe remain private, tumble out like pebbles before an avalanche. But the crumbling of the load, the torrent I was expecting, that may have let in some light and air, doesn’t happen. The last of the tears and the words skid to a feckless stop at rock bottom, but the weight remains and pins me to the precipice, trapping everything inside. This sad parasite has cut off my emotion. No more crying. No more words. The relentless pressure smothers all sensation.

That’s when I go away – when I welcome the dark cloak my unwanted passenger has thrown over me. I’m too tired to look for anymore light.

Lyme disease can cause depression. Like so much about Lyme, the mechanism is not clear.

Is it the bugs themselves? The little corkscrews twisting into my brain, throwing me off balance, making me see things that aren’t there, and forget things that are? Is it because they are making warm little nests in my head that shove aside rational thought, knowledge of recent events, the way home from work? They pervert my perspective. Along with their infectious co-infectors, they take over, invading the limbic system, wreaking havoc with my feelings and ability to remember. They hijack the pre-frontal cortex until I cannot make decisions, plans, or follow a recipe – until my personality is unrecognizable. They both dull and heighten my senses and do whichever, whenever they please. Captivity can lead to depression and hopelessness. And I am a prisoner, no exit left unguarded by those that have conquered my domain.

Maybe the depression comes from loss. Those with Lyme may have lost jobs, mobility, cognition, money, goals and marriages. We keep looking but cannot find our old selves, and we miss them. In the beginning, I was buoyed by my stubbornness – back when I had no idea what I was really in for. I thought it a matter of determination, that I could will myself better, climb into the ring and go as many rounds as needed to beat this disease to a bloody, lifeless pulp. I frustrated loved ones who wanted to help because I continued to insist I could do it myself. But now that slovenly despicable weight of gloom wears me down and I give in, and sometimes, on and off, I give up.

Some of us once dreamed of hiking the Appalachian Trail, or traveling the world. Some of us just wanted to go to work every day and take care of our kids, garden, pets. But most of us have had to come to terms with new limitations. We’ve had to lower the bar. Once the worst of the pain subsides, and some of the fog clears from our brains, we can mostly, despite all that’s missing, find contentment but not always. Losing can cause depression and hopelessness, and we have lost much.

Maybe the depression comes from so many unbelievers. They are the majority – some are physicians, some researchers, nurses, family, friends. They speak to us with condescension, even if they don’t mean to. Imagine losing the ability to walk, being struck with a sudden dementia, having seizures, falling, hallucinating. Imagine a sudden debility or a debility that creeps up slowly so that you don’t know how much you’re about to lose until it’s too late. Imagine having lab tests that prove your body full of infectious disease. Imagine being treated for four years, or 10, or 20, and still your tests return positive. Then someone laughs at you, maybe even your doctor, and tells you Lyme disease is not a chronic infection or that it can’t be contracted in Ohio, or California, or Florida – or wherever you live that’s not the northeastern United States. They dismiss the evidence before them because, they say, 10 days, or 30 of antibiotics – if you’re lucky enough to get that much – will “cure” you. Think about that. Years of treatment doesn’t erase the disease and you can prove it – can prove it’s thriving inside, but the person in front of you says not to worry because you don’t have it anymore as if their magical unbelief is all it takes to eradicate your affliction. Denial of personal, undeniable truth can make you feel “crazy.” It can lead to depression and hopelessness. We have been denied.

Maybe it’s all the pretending. The pretending is so draining. Maybe that’s what makes me depressed. It’s been a few years that I’ve been sick now, and it seems there’s a time limit for lifelong illness that is, surprisingly, not the end of life. I’ve been making excuses well past the time allotted by the healthy people. It might be different if I “looked sick,” but most of us with Lyme look OK. Inside I tremble with fatigue, my heart is skipping beats, my brain is working overtime to think of the simplest words. When I feel like there’s not enough air, don’t worry, I’ll turn around so you can’t see me gasp. When my joints throb and my skin hurts and my bones ache and my muscles spasm – it’s alright – I’ll make sure you don’t know. I’ll keep my anxiety and depression to myself and if I can’t, I’ll find a reason to stay away until I can put my “good” face back on. Pretending is exhausting and can lead to depression and hopelessness. I am a pretender, afraid to be “that person” – the one who’s always sick, who doesn’t feel well, who can’t go, who can’t stay.

I don’t want to be sad. I don’t like being depressed but sometimes, Lyme feels like this.