There’s a phrase that’s tossed around the chronic illness community and it’s something I think about a lot.
“Don’t let your illness define you.”
Perhaps because I share my story quite often and quite graphically, I’ve had many people tell me that I’m obsessed with my illness. While I don’t think obsessed is the right word, maybe there’s some truth to it. I do think that there’s more to me than my illness, but when you’re chronically ill, your health is a huge part of your life. It’s hard not to constantly focus on something that affects every part of your being. I can’t brush my teeth, eat, or go outside without being constantly reminded that something is wrong in my body.
One thing that I love about myself is that I’m a musician. Music is something that has been a large part of my life since I was young and I do think it’s a defining part of me. However, this disease has tried to take that from me. It’s hard to want to play music when it is physically painful. You start to associate music with pain and you slowly watch one of your defining qualities be replaced by this ugly entity. I would be lying if I said I didn’t let Trigeminal Neuralgia win that fight sometimes. So I ask, “how is one not redefined when they would be a completely different person without a factor like chronic illness?”
I have always been an ambitious person; perhaps even too ambitious at times. On one hand, my drive has made me very successful in the past. Whether it was school, work, volunteering, music, or sports, I gave my all and I did well. However, when I say that my determination came back around to bite me when I got sick, I mean that it took a literal chunk out of my physical and mental state. My body couldn’t keep up with my brain. Being diagnosed with a chronic illness changes your abilities, but not your desires and aspirations. In the beginning, I was able to use my diagnosis as motivation. I convinced myself that I would somehow be able to overcome a degenerative and incurable disease. Logic and reasoning had gone out the freaking window and I was operating on pure fear of the future. I could no longer be in a physical school setting, but with the assistance of the school, I was able to take my work home and complete it there. For the first semester of my Grade 10 year, I rocked it. I took my work with me when I had hospital stays and I was actually ahead of my peers. However, come second semester, I started to slow down. The medications I was put on disabled me even further. I was needing more time to complete simple tasks, I was forgetting words and previous concepts, and I was fatigued all the time. I could barely get out of bed, never mind focus on school work. I beat myself up and asked, “why could you do this stuff a couple of months ago, but you can’t do it now?” This really marked the decline of my mental health and I was pushing myself harder than I should have been, which affected my physical health, too. For the first 15 years of my life, I based my identity on my ambition, intelligence, and high-energy attitude. My illness was taking these things away from me, one-by-one, and I was having a bit of an identity crisis. I didn’t know who I was without these defining features and I wasn’t mentally mature enough to handle that.
I’ve had people tell me that it’s a good thing that I got sick when I was young. That maybe that means I’ll be able to adjust my life to the pain. That maybe that means I’ll see a cure in my lifetime. Perhaps some of that is true, but being young has brought some negatives with it. It means that starting my adult life was put on hold right when I was just getting a taste of it. Not only was it put on hold, but I have to watch my peers get to do all the things that I can only dream of doing. One of the hardest things for me is seeing other people with chronic illnesses, TN specifically, still have the ability to work and/or go to school. Of course, there’s a huge sense of jealousy in that and I’m not afraid to admit it. I think there will always be a part of me that thinks, “They have the same disease and they can still do it. What’s wrong with you?” It doesn’t help when you have the odd chronic illness warrior post a picture of themselves at school or the gym and title it, “If I can do it, you can do it, too.” I know it’s meant to be inspirational, but it hurts. I don’t think it’s anyone’s place to compare struggles and while it’s important to acknowledge your own struggle, I don’t think it’s okay to assume that you’re worse off than someone else. That being said, as I’ve matured, I do feel a sense of immense happiness for these people. I hope they acknowledge that it’s a privilege to be able to do these things and I hope they take all the wonderful opportunities that they can.
It’s hard to feel like you have a purpose with an illness, especially when it impacts your ability to do things you were once able to do. I think all that I want for myself at this point is to feel like I have a purpose and that the aspirations I’ve had since I was a child are not so far-fetched. Maybe I have to change the way that I get to the end goal, but I would hope that my end goal doesn’t have to change because of this disease. No one wants to constantly reinvent themselves and possibly compromise their character in doing so, just to live and feel purpose. Maybe our purpose is to educate others on our disease, but we have to decide if that’s enough for us. Every person has the innate need to feel needed and I think everyone wants to do something important with their life. It’s a hard reality to accept that your definition of importance may not be the definition that’s attainable for you. However, I don’t think that’s necessarily a bad thing.
So what defines me?
I don’t know. I don’t know what words or activities illustrate me as a person. I don’t know what to say when someone asks me what I do for a living. I don’t have a clear path for my future. However, I know that I’ve grown immensely in the last 6 years and that I will continue to grow. I know that I’ve survived some really horrible things and that I didn’t let that taint my view of the world – I chose to be a better person because of it. I know that I’ve conquered every obstacle along the way; maybe not with elegance or grace, but I did it anyways lol.
So maybe my illness has defined me, but I don’t think that’s a bad thing. I think we should take the lessons we learn from hardships and let them guide us through our lowest moments, even if the suffering we endured to learn them wasn’t worth it. And perhaps my wisest words yet…
The world is shitty enough – don’t make it shittier.