Often times, when I tell someone that I have Lyme disease- I usually don’t even go into Miyamotoi and the others- they assume that it is like saying I have mono, or the flu. Explaining why I cannot do something simple, like take a long walk, go out to dinner, do work in the afternoon, most people give me a belittling, pitying look, because they have no idea what Lyme really is. They have no idea it’s severity, it’s insufferable challenges, it’s inescapable reality- and I am so sick of it.
Getting sick in the later portion of college was hard for many reasons, but top of the list was this misunderstanding. While almost everyone knew I had Lyme disease, I would still get constant berating with “so why aren’t you going out tonight?” “why are you only taking three classes?” “why do I never see you anymore?” “why do you go home all the time?” “but you look so good! you must be better” and “you’re still sick?”. It was bad enough having to choose between putting my extremely limited energy towards going to class and spending time with friends, but being questioned and challenged about the truth of my new life was so, so much worse.
It’s hard to understand what this life is like if you’ve never experienced a type of chronic illness. To most, if you want to do something, you can do it. But for us, as much as my mind and spirit want to go out to dinner with friends, my body simply cannot. It’s like being split in two. The person I was before, who’s still inside begging to take control again, and the person now, who is trapped in a body that has suddenly stopped functioning. There are no words to describe how terrifying, soul crushing, and devastating the realization of this divorce between what once was and now is can be.
For those of you reading who are not sick, stop for a moment and truly try to envision what this is like. To have your mind, soul, entire being watch as your life slips away without your consent. To look back and pinpoint an exact day where it all changed, a night when you went to bed healthy and woke up sick, never to go back. It never occurred to me, to any of us, that one day we would be sick and simply never get fully better. It’s like losing someone without saying goodbye. I lost myself, the person I once was, the one I was supposed to be, without cause, warning, and without saying goodbye.
Accepting this change is a slow healing process. The first year and half of this journey I was too sick to even contemplate what was happening. I did not have the energy to mourn what I had already lost. It was not until later, when I was finally starting to rebuild myself, that I had to face the devastating trauma that had taken my life- and it is like going through it all all over again. I have been working on this part of healing- the acceptance of my limitations and disease, the new shape my life has taken, my required priority changes- for about a year now, and it’s really, really hard. It is a process that looks different every day, some days it is easier to accept the reality of my diseases, but other days all I want to do is yell at every person who is able to go out and take a walk without planning their day around it; scream at the top of my lungs that I am trapped inside of a body that is no longer my own and I cannot escape.
But it can be hard to express this. As much as I want to yell and explain to people what this hell is, I rarely do. Words simply do not do the pain, torment, and devastation that this disease causes. To those around me, few friends and family that have a closer look into what is going on, there is the strange sense that I am a broken record, just repeating the same complaints and breakdowns cyclically, and it can create a feeling of guilt, making you simply draw inward further. For yes, my mom can hug and calm me down from these moments every time, but she can never make the pain truly go away, and we both know that. While being sick is awful, watching you love suffer without any ability to take it away cannot be easy either. So as the sick one, you can begin to feel like a burden- a sense my family tries to rid whenever they can- but can still grow inside and make the process all the more lonely.
This is one of the reasons talking to one another, reading each others stories and experiences is so important. We need to know that we are not alone, we are not crazy, and often times it takes another person walking through the same hell to get that sense of comfort. Simply to know that someone truly understands is possibly the most important building block in mourning the before and after of chronic illness. Knowing we are not alone, that we can make it through to another side that does not revolve around constant suffering is- to me- the key to having hope and healing.