I’m struggling with my mental health today. The negative thoughts associated with Lyme disease and constant survival are persisting. I’m worn out, burned out, trying to keep the fire lit and push, push, push. But it’s too much. Something’s gotta give, but there’s no way I’m giving anything else up to this damn disease.
It already tried to take my life, but I built it back layer by layer, brick by brick. I succeeded. I survived.
Still, this illness hangs over me every single day, wondering when my body will give out. Wondering if my strength will fade and I’ll give in. Will it be tomorrow? Next week? A year from now? Thirty years from now? Lyme disease…
How do I explain what it’s like to live for years with pain, with fatigue? With burning sensations, with neuropathy, with brain fog that causes an inability to concentrate? An inability to comprehend, to remember? With depression and anger, over-sensitivity and mood swings? With numbness in my hands, with bone pain in my legs, with a heart that feels like it’s being squeezed, and with organs that feel like they’re on fire?How do I explain living with insomnia and a need to constantly sleep both, with feeling off-balance, with feeling weak in my muscles?
With feeling all of these things at once, every single day, for years.
And then combine that with the loss of jobs or school, family, friends, a social life, independence, dreams… Add in years of doctors telling you you’re fine, that there’s nothing wrong with you, that it’s all in your head. A dash of mortification when the tests come back fine and they shake their heads and say, “Maybe you need a psych eval.” When they pat you on the shoulder and say, “You’re just sensitive.” Then the rumors at work or school, questioning your character, “She’s just making it up,” or, “He just wants the attention.”
No one wants attention like this.
Mix that with guilt for not being who you were – not the runner who can’t get out of bed. Not the singer whose anxiety keeps her from the stage. Not the writer who has lost her words.
Now, you’re being cared for. Now, you need someone to get you to the bathroom, to cook your meals, to clean your house. You feel like you’ve become a burden on your family, on your friends, on the system… But what can you do? You’re in need, and there is no choice.
There’s no more room for pride. You have none left.
Lyme disease doesn’t always kill you. The bacteria need a host, after all. But you only feel like you’re half alive, a ghost of the girl you once were, a shadow of the man you used to be.
We are spirits suffocating in bodies that have broken down.
I’m luckier than most. I’ve come a long way since that spring day in 2012 when I saw my first Lyme doctor, since my summer relapse two years ago. I can walk again. I can drive without being afraid I’ll forget what stop signs are. I can run errands without wondering if I’ll make it home. But everything takes effort, and I’m tired of explaining to people who just don’t understand what it’s like to live in this body.
You see me… The visible me. You see me smiling because I have my good days, yes. You see me laughing because that is who I am. I am bubbly and optimistic and full of hope and love and light, stronger than even I believe.
But I am also full of pain. I am also filled with fear. I am also in the shadow of this disease, trying to keep my brain from becoming too inflamed, trying to keep this Lyme psychosis at bay, these thoughts from screaming too loudly.
Trying to hold fast to the truth that someday, I will be more than this disease..