If you have a chronic illness, you grow up with a foot in two worlds. There’s the ‘normal’ world, you go to school, spend time with friends, develop hobbies and lead a life similar to everyone else. Then there’s the other world. The world populated with doctors and nurses; where your time is spent on hospital visits, medical tests, and recovering in bed.
If you develop a chronic illness from a young age, as I did, you adapt to your new parallel lives very quickly. As a child I had an insatiable hunger to learn; I was so excited to start primary school. Then I had my first blow to what might have been a more ‘normal’ life. The weekend before school began; I was diagnosed with Ulcerative Colitis (UC). It might even have been the excitement of starting school that triggered it. This meant, right from the very start of my education, I grew up balancing school life and hospital visits. Trying to catch up on missed homework, showing teachers countless notes to excuses absences. Being discreet about my own ‘problems’ led me to assume everyone else must have issues that they don’t talk about too. I didn’t consider myself that different. I just thought we all had something to deal with. Then again, most seven year olds wouldn’t be able to judge whether a nurse was good at taking bloods or not.
I’m lucky enough to have had an illness that does have remission periods so the lapses in my health never lasted more than two or three months. Every four years or so, usually coinciding with some life event like the Leaving Cert, my UC would flare up, I would be put on steroids for eight weeks, walk around with an inevitable moon face for six of them, and I would be ‘ok’ again. Doctors then seemed so in control and confident about everything that UC never bothered me that much.
It was only in what should been my final year of college that the two worlds collided beyond repair. I had just returned from a year in China as part of my degree when I felt another flare-up 10 days after being in Ireland again. This was the first flare-up since moving to an adult hospital. It was also the worst one I had ever had. I remember getting out of the car one day to catch a bus to college and being in too much pain to say thanks for the lift. I went into hospital the next day for the first of the minor surgeries I needed that year. I still insisted on going to college, even though most days I was too weak to walk to classes once I got to campus. My concentration was terrible; I was either in too much pain or high on painkillers to think straight. I didn’t want to let this illness stop my other life. I wanted so badly to be like my friends, who were only worried about passing their exams and having a good time in between. After another small surgery I woke up to be told I had Crohn’s Disease. This changed everything. I finally admitted defeat and deferred some of my exams until next semester. Part of the reason I held on for so long was the only thing that got me on the plane home from Beijing was my promise to myself that I would be back straight after I finished my final year. So I wasn’t just giving up my normal life, I was giving up my dreams for the future.
One of the hardest parts of that year was watching my friends live their lives, with their complaints about being tired because they had been out the night before, or worrying about how they looked. I kept a lot of what was happening with me to myself, partly out of habit, but also because I didn’t really want to talk about it. When I could be in college I wanted to be fully in that world, I couldn’t deny what was going on, but I could escape it for a while. At this point I knew I would be back again for another year in college, to complete the necessary credits for graduating. My classmates talked endlessly about their plans, some to return to China, others to start working here in Ireland. I was diagnosed with situational depression early after the New Year.
That was another reason I continued to cling on to college life as best I could. I was terrified of having to stop, terrified of having to sit at home and face my worst enemy. Myself. There are few words that can describe the sheer nothingness that is depression. Knowing that if you stop ‘living’ there’s nothing to catch you, nothing to stop you falling. I had been kissed by a Dementor, I felt like I would never be happy again. I could still act like I was okay when I needed to, my friends never seemed to notice I was empty inside, I could laugh at jokes but when I stopped laughing, there was just nothing. Depression isn’t just sadness; it’s a lack of being able to feel anything. Your heart hurts sometimes, and you try to hold on to that feeling, because at least you’re feeling something, even if it’s pain. I daydreamed about it all being over. At bus-stops I would award points to cars passing by, based on whether they would kill or just maim me. Trucks usually won. I was disappointed when I woke up every morning, I didn’t want to be alive.
This other world had taken over my whole life. I was trapped in my own mind, listening to advice from other people to try this, or that new thing, or worst of all, to cheer up. I had hardly any energy to do fun things, even if I could force myself to think about doing them. It’s hard to decide whether you want people know what you’re going through or use them as a means of escaping for a while. It’s especially hard to share with your family and friends that you don’t want to be alive anymore. With family I didn’t want to hurt them, and I don’t think I thought enough of my friends to tell them something like that.
Since then I’ve had months of therapy and medication for depression, on top of treatments for Crohn’s and now Fibromyalgia. It’s been three years since I got home from China and I still haven’t gotten to reconsider the offer of trying scorpion which I regretfully turned down while I was there. It’s strange to think everyone I’ve met in the last three years has only known me as ill. People still don’t really understand the extended length of time I’ve been sick. Chronic illnesses don’t follow the same path as illnesses in the normal world. People there go to the doctor; are prescribed medicine and walk back into work in a few days. In my world, I go to the doctor if I’m feeling worse than normal. We chat about medications and doing further tests on me. The doctor might decide to change medications. I’m told it will take at least three months to show any difference and I’m sent home, to sit and rest, to think about life and now to write a blog.
Me In the Forbidden City in Beijing, in healthier times
So what about you? What do you find most difficult about living a dual life?
DoubtsKillDreams 