I’ve found myself apologizing a lot lately, and I’m not sure why. It’s become some sort of weird habit. I even once walked into a garbage can—and I apologized to it. I’m certain the garbage can has no feelings, and therefore I only hurt myself.
It is challenging for me not to feel like a burden at times. Numerous family vacations were canceled because I was too sick to go, and I’ve visited emergency rooms across the country, interrupting family fun. I’ll see my doctor one week for one thing, only to have to go back the following week for something else. And I admit: I sometimes deal with the misery of whatever is going on inside my body longer than necessary because I just don’t want to bother my doctor. But this is not my doctors’ fault; I have a team of fantastic physicians right now. My tendency to try to deal with things on my own dates back to my teenage years.
Still, I know my way of coping isn’t necessarily the healthiest, so I’ve made an effort to do better. One pivotal day came in college. I’d visited the campus health center a few times, so I knew it offered a counseling program. And one day—when I had a rather severe panic attack while also dealing with a blood clot—I went there because it felt like the world was caving in. I walked into the health center and told them that I couldn’t leave until I spoke to someone who could help me. I waited for two hours, and I cried throughout that first session, but it was totally worth it.
I’m one of those people who need to talk through problems to make decisions, even if it is just to a family member or friend. I need to hear my thoughts aloud to better process everything. That’s why counseling was key to helping me cope. I’m completely unashamed to say that one of my best teenage decisions ever was attending weekly counseling sessions at the college health center.
I eventually transferred to a different college in a larger city, where it was challenging to get counseling. My primary care physician seemed confused as to why I needed counseling. (I had occasional anxiety, but I did not have a mental health condition in need of medical intervention.) But my past experience taught me that counseling helped me better cope with my health issues, as well as the limitations I was dealing with. So I paged through my health insurer’s listings for counselors and began my search for a counselor who fit my needs.
While college counselors see a bit of everything, I seemed to run into a wall with them as a chronically ill teenager looking to process my life experiences and challenges. The first counselor I saw in my new city asked questions such as: “What do you think your life would be like if you weren’t sick?” To me, that’s akin to asking what I think my life would be like if I’d been born a sloth. I don’t have a point of reference for that. Would my life be any better? Not necessarily.
Another counselor wanted me to make a last will and testament for my limited possessions (book collection and musical instruments, I guess), suggesting I plan ahead for my death. Apparently, that counselor believed that coming up with a “dying plan” would cure me of my fear of blood clots. But I’d already put together a living will when I was 18. I understood the necessity of that, but writing this “dying plan” didn’t do anything to cure my anxiety. My diagnosis is chronic, not terminal. It made me wonder how many psychologists interact with teenagers facing chronic illness and the challenges those illnesses can bring.
Eventually, I learned what helped me most in counseling during college: positive coping skills. It’s challenging as an adult to receive a serious diagnosis, but at least by then, adults have lived long enough to deal with other challenges and learn life skills for coping. And even then, adults still sometimes struggle. I still strongly rely on mindfulness and intermittent therapy sessions to deal with anxiety and post-traumatic stress following hospitalizations.
For me, writing is a means to achieve wellness. I’ve learned how to express myself so much more effectively, and even if no one reads what I write, at least it provides an outlet for my thoughts. I’ve realized through all of this that an integral part of taking care of myself is also to make sure my mental and emotional health needs are met, too. I’ve learned to unapologetically meet my own needs by setting goals, such as attending graduate school. And time spent working on myself leads to many of my past insecurities from being chronically ill fading away.
I’m really looking forward to starting my graduate studies in creative writing. My main focus will be the misrepresentation of chronic and mental illness in movies and how it further stigmatizes these groups. I’d like to use the skills I learn in grad school to help chronically ill teenagers better express themselves through creativity—specifically writing. One of the main characters in the screenplay I’m working on is someone living with hemophilia. If I can help even one teen feel more confident with their diagnosis and navigating the health system, it will very much be worth it.