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The Guilt That Comes With Lyme Disease Remission

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I have a confession to make.

Healing from chronic illness is hard. Not as hard as being sick with chronic illness, but it’s still hard. One-third of my life, I was actively ill. Most of those years were undiagnosed and untreated. I’ve talked about those extensively other times, as have most people who have lived in the trenches of chronic illness. But getting better, and being better is something new to me. And, while I am so unbelievably happy to be on the other side of sickness, I had no idea that I would experience it in this way.

My “well” months (I’m about six months into them now)  have been defined by guilt and gratitude. I think I’m experiencing something akin to survivor’s guilt. I know that people with my “condition” (Lyme and confections), don’t always experience healing. I know people have not made it out on the other side. I know people my age have passed away from complications of this horrible, terrible, awful disease. It makes me a little uneasy to be well and talk to other people who also have Lyme, or know someone struggling with Lyme, when here I am feeling pretty well. I know my story, and I know it wasn’t easy, and I know that I shouldn’t feel bad about finally feeling well, but I do.

Plus, I feel guilty about the burden I’ve been on my family. Just because I’m well now doesn’t mean that the bills have stopped coming. I dread getting the mail. In fact, I purposefully do not get the mail for most of the week because I never know when a new bill might show up, and I know that no matter how good the day has been
going, it ruins everyone’s mood when a new several hundred dollar bill gets opened. And the price of staying well is not cheap. Maintenance meds, vitamins and supplements are not inexpensive. It is one of my greatest sources of shame to tell a child that we can’t do some things because it would be too expensive and know that had I not been ill for so long, we probably could have done whatever those things were.

It’s hard to find balance in a well life, with a chronic condition, that I’ve been told can relapse. Part of me feels like I’m living on borrowed time. Part of me wants to indulge in every single thing I abstained from to get healthy while I can indulge – things like caffeine, chocolate, gluten, potatoes and staying up late. Part of me wants to live like there’s no tomorrow because if I get sick again, I want to have lived happily while I was well. Part of me, of course, knows the reasonable thing to do is maintain the habits that helped get me healthy even if they are absolutely no fun at all. But, at the end of the day, I know that I have to respect the process that made me healthy, because at the end of the day I am overwhelmingly grateful.

I’m unbelievably grateful for every person who has stood by my side through the thick and thin of this disease, and every lesson it has taught me. I am grateful for life, for the ability to wake up without pain, to go to sleep without pain. I am grateful for the energy to make it through the day. I am grateful for the ability to even eat food and enjoy it, which was not a luxury I had for much of my treatment. Even though a little part of me is always waiting for the shoe to drop, and the uncertainty Lyme brings to begin again, I am grateful for the days I do have now to spend being myself again.

It’s hard to balance the guilt, uncertainty and indulgences with gratefulness and practicality, but I am glad to be a survivor.

Photo by Andrew Le on Unsplash

Originally published: August 28, 2018
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