Why I’m Thankful To Have A Lifelong, Incurable Illness

Nine years ago, I woke up in a hospital bed after being sedated during a colonoscopy. The doctor I had been seeing for a few weeks confirmed with me that her suspicions were true – I had Crohn’s Disease. I smiled vaguely, turned to my mom and slurred “Mom, the nurse who helped me in the surgery room ran over a deer.” Apparently, this drug-induced delusion was a bigger concern of mine at the moment, as opposed to the fact that I had just been diagnosed with an incurable disease.

Granted, you can be diagnosed with things a lot worse than Crohn’s Disease. Crohn’s won’t kill you, or paralyze you, or take away your mental capabilities. It’s is an inflammatory bowel disease (read: you poop a lot and your stomach always hurts). You have to be really careful with your diet, and oftentimes you have trouble keeping weight on (and not in a fun way). The causes of Crohn’s are unknown, but potential factors include genetics, environmental factors, and Kristen Stewart.

For the most part, you can live a very normal life once you find the proper treatment (which can include steroids, infusion medication, and daily medications). But it’s the time periods where you don’t have the disease under control that things can get ugly. For the most part, my doctors were always able to control my symptoms with a steady dose of steroids and other daily medications. Crohn’s has always sucked up a lot of my energy, and I quickly got used to a life of stomach aches and abdominal pain, but for the most part I was okay. Then, this past spring, my body gave up on me for a while.

Crohn’s can be irritated by stress, and I had spent four years of college and two years of post-grad life beating up my body, thanks to a horrible diet and a lot of drinking. I then went through a phase of anxiety attacks, I lost my grandfather, and I moved – all in a matter of three months. My body had taken all it could, and I all but collapsed this past spring.

The medicines that had kept me stable since I was 15 suddenly stopped working. Everything I ate went right through me. I had no appetite. My stomach hurt constantly. I could barely pull myself out of bed. I was exhausted and nauseous all the time. I was so physically sick that it started affecting me mentally too – I was irritable and panicky and anxious and depressed. There were some nights where I was so sick and delirious that, for strange 10-second periods, I would think I was dying. Every morning I got on the scale and the number was smaller. I felt like I was wasting away.

This went on for months, until we finally found a combination of a clean diet and a strong infusion medication called Remicade (or as I think of it, Miracle Juice) that finally helped me get back on track.

I’m lucky enough to be able to say that this was probably the hardest thing I’ve ever had to go through. I can write about it with a clear head now, and make jokes, and see that it could have been much worse. But in those darker moments, when you feel ill and weak and in zero control of your own body, it seems as if things are never going to get better.

Although the medication I’m on now has really turned things around, I know I’m going to have ups and downs with this disease for the rest of my life. I still have really bad days now, and I’ll have them in the future. There are still moments, when I feel really sick or I’m in a lot of pain or I just want to eat fast food like everyone else, where I feel angry and upset about having to deal with this disease. If I could magically get rid of it, I would in a second. But I can’t, so I have to think of some other way to handle it, and that way is that I try to be thankful for it.

I’m not literally thankful that I have this disease. I’m not happy that I’m ill. I’m not thrilled that I’ll always depend on medication. But I am thankful for the things it’s taught me, the realizations I’ve come to, and the sense of perspective it’s given me.

I’m thankful that I had to suffer a little bit. That I was reminded of how many people out there have it worse than I do – that I was forced to appreciate my health when I do have it and I was forced to stop taking my happy and blessed life for granted.

I had to go through something and I got through it. And I’m still getting through it every day. People that meet me now can judge me however they’d like. They see me as happy and healthy and, for the most part, someone who has an easy life. They don’t know what I’ve been through or how my way of thinking has been changed. I have no control over what they think of me. I can only control my own way of thinking and my own way of looking at the world.

Going through something that made me feel so weak and helpless, and learning how important my own mindset was, has freed me from worrying about other people’s opinions. I still care what other people think – I’m human, after all – but I don’t waste much time on it anymore. I saw the people that stuck around me when I was sick and grumpy and a drag to be around. Those are the people whose opinions I actually want to spend my time worrying about. Those are the people I want to spend my time with.

When you lose your health for a while, you start to see pretty clearly what matters and what is stupid. Clothes are stupid. Social status is stupid. Money is stupid. The Real Housewives is stupid. It’s not that I’m above these things now, or that I think I’m better than other people. I still like clothes. I still care about my social life. I just see it all a little bit differently than I did before. When I was laying in bed and too sick to do anything, my little sister would curl up next to me so I wasn’t alone. When I have to go to the hospital every few weeks to get my four-hour long infusion, my boyfriend comes with me and sits there and makes me laugh, or my best friend comes with me and we watch a movie. These people are the things that matter. That’s what being sick has taught me. TC mark

image – Leanne Surfleet

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  • http://gemmalouise8.wordpress.com gemmalouise8

    The bit about your sister really got me. When I was ill my sister shared a bed with me and it was such a huge sign that she cared I’ll never forget it.

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