Good morning. My name is Grace Shults. I am 22-years-old and I have been dealing with Lyme disease and co-infections since I was 16-years-old.
Today I would like to address an often overlooked part of having Lyme disease: the loss that comes with this illness.
It is hard to truly convey the amount of loss a Lyme patient experiences in their life. There is a reason that suicide is the number one cause of death associated with Lyme disease. Being in endless physical pain with no relief is certainly a large part of it, but not all of it. This illness takes not just your body, but your entire life in the process. Not being able to work, or go to school, or see loved ones, all while feeling like you’re dying, causes a grief that swallows you whole.
As you can imagine, I’ve endured a lot of loss in my own life. Now as a 22-year-old woman, I am trying to pick up the pieces after the fallout of Lyme. I am trying to build a life with the anchor that is this illness weighing me down, and truly it feels impossible most days. Every single day my body hurts. I also deal with PTSD from this entire ordeal. Again, it’s not just physical symptoms that destroy us Lyme patients. It’s the trauma of not being believed, almost dying, and pulling ourselves back from the brink of death that wreck us too.
I’m speaking today to drive one point home to all of you: this problem has a real human cost - faces, names, parents, children, and lives that are lost in the process. There are millions of Americans of all different races, genders, socioeconomic statuses and backgrounds who are decimated by this illness, but only a minority have been historically represented in this conversation, and that needs to change. We are not just numbers in a statistic, we are real people. Millions of us are disappearing from our lives without a trace because we are so ill. We fall in between the cracks of the medical system after being thrown away because no one knows what to do for us, so they alienate us. We fight what feels like a losing battle everyday, but we continue to do so in hopes of gaining back some of what we’ve lost.
Please, if you take anything away from what I’ve said today, remember the patients. We will still be here, needing treatment, testing, and most of all: hope for a better tomorrow. Lyme patients need to be an active and respected part of the solution to this problem. We need people who are not only going to listen to our suffering, but who are going to try to continue to take actionable steps to address the systemic failures that have led to this health crisis in the first place. There is a lot of mistrust in the medical system and system in general within the Lyme community, and it is going to take a lot of active listening, digesting what we have to say and action to begin rebuilding that trust. Thank you for reading.
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