In honor of Mental Health Awareness Month, Simple Habit is showcasing people’s experiences with various mental health conditions. These stories are meant to foster open conversations about mental health, its fragility and ever importance. We want to stress that everyone’s experience is different and these stories only highlight one of many.
Kathryn Poe is a student at Capital University who suffers from a blood disorder, made rarer by how chronic and extreme it happens to be. She juggles this diagnosis with her passions: being a creative writing major, her interest in chronic illness and health care policy, working as a professional portrait photographer, bullet journaling, podcasts, poetry, and even working on her second novel. For Mental Health Awareness Month, Kathryn shared with us what it’s like to live with the unknown and stress of a unique chronic illness. We want to thank Kathryn for being so open with us and hope that she is able to inspire resilience in all of us.
Uncertainty is something I’ve always struggled with when it comes to my illness. I’ve had an incredibly rare blood disorder since I was 15. Under normal circumstances, this disease is survivable and only life-threatening once. People can be live long happy lives with this diagnosis. For me, after 6 flares, it’s clear that my body will not stop unless something very extreme is done. While the condition isn’t necessarily rare, the chronic nature and extremity of my case is. At my worst, I’ve been disabled to the absolute extreme and at my best, practically able-bodied. It’s impossible to tell when things are going to happen, which makes it difficult to plan a life – especially as a 20-year-old college student.
This uncertainty has definitely contributed to my anxiety; however, rather than generalized fear, I would describe the experience as “waves of terror.” It’s important to keep in mind that I’m four years into this, and I’m pretty acclimated to the “culture shock” that comes with being ill. Even still, not knowing when it will hit is still a lot for me at times.
To help, my therapist suggested I try meditation and mindfulness. I was super hesitant at first, but just learning how to notice my surroundings and not think too much has been great. Learning how to better control my thoughts has also helped me check my anxiety and learn to accept negative things when they happen. Specifically, the practice of separating myself from my intrusive thoughts has been really helpful and made me note thoughts instead of grabbing onto them and worrying about them. It’s definitely given me a good framework of tools to use when these waves of terror strike.
Overall, I now have an extreme appreciation for things, because I recognize that I won’t have them forever. Originally, I wasn’t supposed to make it past 18, so being 20 is a blessing. I’m very aware of how temporary things are for me, and that can be both good and bad. With my upcoming bone marrow transplant, that has become even more pressing. The drugs they were originally giving me basically stopped working and then their plan B failed as well. Right now I’m on plan C, but it’s not sustainable in the long term because the medications are so dangerous, so plan D it is.
Meditation and Simple Habit have been great ways to deal with my life changes through hospitalizations and being a college student at the same time. I really love unguided mediations, because I can play them in the background when I need to study or if I’m in the hospital and I’m trying to study in a waiting room, it helps center me and zone into what I need to do. Chronic illness and college are hard enough separately and when put together, can seem impossible. But with Simple Habit, I can get away once a day. Still, sometimes it kind of feels like Where the Sidewalk Ends, with the kid looking out into nothing.
Acceptance of my illness has come at different points. Speaking to other people who have gone through it has helped as well as having open conversations with people that I love. Talking it through has been helpful because talking is how I process. But I think it really just comes down to letting things go too. I’ve had a lot of perceptions about what my life will be and this changes all of them significantly again and again. I’ve had to let a lot of things go in order to accept the present.
I tend to think of it as “if you love it let it go and it will come back eventually if it’s important.” Things that I love will come back to me if they’re important enough. Things that need to go will go. There isn’t anything I can do about it, and I also can’t control what my body does during the procedure so worrying about it doesn’t change the outcome. What happens, happens.
It’s a bit different this time, however, because for the first time I have a choice. This upcoming bone marrow transplant gives me a chance at living longer without a disease. It’s empowering in that way. It’s a potential cure for my condition, which is insane to think about. I could have chosen to wait it out, but that would mean risking another flare, which comes with a 40% mortality rate each time, and I’m not willing to do that forever. Having the ability to choose when I am hospitalized and being given the opportunity to get my life in order beforehand is really a blessing. It gives me a lot of control over how I handle the situation and it gives me a new sense of bodily autonomy that I’m not used to having. The situation is bad, and the choices aren’t great, but now I have a choice and that makes it okay. I don’t know what’s waiting for me on the other side of this procedure. That doesn’t keep me from moving forward. I know that this time, uncertainty is my choice and that this time I’m choosing the chance for better.
Kathryn also writes a blog herself where she shares her favorite music, poetry she’s written and opinions on her passions – be sure to check it out here!
Want to share your story? We’d love to hear: firstname.lastname@example.org