When you compare Lyme Disease to non-terminal cancer it makes people uncomfortable, because most people don’t realize how intense and disabling the symptoms of Lyme Disease are. It’s understandable, but that doesn’t change the fact that Lyme is that terrible of an illness. It put me through so much pain I would lay in the tub for thirty minutes before working up the energy to bathe myself while sitting. It was agonizing, it dropped me head first into depression. It was life altering, in a terrible way that makes you a better person much later on, once the worst is over and you can see the light.
I’ve been depressed before. I’ve been depressed more times than would be considered normal, because I also have bipolar disorder and depression just kind of comes with it. But this was a different kind of depression that I had never known.
Every time I’ve spiraled down it’s given me empathy when I emerge. I feel for people struggling with their mental health because I can at least start to understand it having struggled myself. Lyme’s gave me empathy for people struggling with their physical health, something I hadn’t really known to this level. It helped me understand the pain of others. How broken certain systems are. And it got me eye to eye, face to face, with a whole different level of suffering.
It’s not something I want to forget, though it was terrible, though I never want to have to feel anything like it again, it’s not something I want to forget. I want to keep this deep empathy. I want to stay alert to peoples suffering. And I want to do all of this while also allowing myself to move on once I get completely better.
It shouldn’t be a hard task, but as life slowly returns to some sense of normality, I find myself cold shouldering the sickness, the pain that came from it, the memory of it. I’ve waited so long to rejoin the world and leave the sofa and now it’s happening and I’m thrilled. I feel alive again, I feel like I’m making up for lost time, I feel like I deserve this happiness, that I have earned it through my pain. But I’m doing that thing where I make things better than they really were, not because I think I wasn’t in terrible pain, not because I want to downplay the misery, but because I don’t want people to linger on it. I want them to see me now. I want them to see me healthy.
How does one keep their empathy, their ability to relate to terrible things, advocate for those suffering while they trying to leave their own pain behind. It’s a strange thing that I haven’t faced before, because the only thing I’m used to advocating for is mental health, and being bipolar, it’s never left behind, it’s only managed, kept at bay. I know it will rear it’s ugly head again, so I talk about it and I keep it in mind, and I live in my moment of joy knowing that both joy and depression is fleeting and they both will return to me. I thrive knowing that I’ve beat it before and I can beat it again.
I don’t have that with Lyme Disease, I don’t have this ongoing driven spirit to keep my fight alive. I want to bury the fight, but I don’t want to bury anyone with it. I want to hold these people up. I want to help. I want to advocate for them like so many advocated for me. So it leaves me grasping at painful memories trying to lock them away out of sight, but still be able to access them whenever I can. The problem is I’d prefer the box get dusty. I just want to keep the drive to help.
Perhaps I haven’t recovered enough to do this, perhaps I need to heal completely from Lyme, physically and mentally before I can be a healthy voice for it. Maybe I’m still in the shadow of the trauma and I can’t help people from the dark.
But if you are in that dark, I want you to know that I see you. I understand, and I’m so sorry. You deserve better than this broken system and backwards views. You deserve to be healthy again, and the fight shouldn’t be this long or this hard. I hear you, and I want you to know that it can get better, and when I heal completely I want you to know that I’ll come back for you, I’ll try to share as much of my story as possible to give you a map to the only roads I know.
Stay strong, stay brave, and don’t give up the fight, warrior.
I have written about lyme disease here, here, here, here, and here.
3 thoughts on “Lyme, empathy, and trying to only leave the first behind.”
Anna, I hear you! I’ve been dealing with Lyme and co-conditions for almost 3 years. Finally starting to feel 70-80% on a somewhat consistent basis. I’m also a trained life coach, and tell myself I really want to help others deal with the particular emotional challenges of Lyme. Yet, deep inside I don’t feel strong enough to go back to that place of what was fear and despair for me, with other suffering Lyme folk, yet (maybe ever).
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It’s such a tricky place to be! It’s terrible that its so poorly treated that patients have to be their to support each other instead of the system looking out for them. Hopefully one day that will change!
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