Perhaps I sound bitter, but I understood how people with serious chronic illness say that they are so much better, happier, more fulfilled, stronger, or a new person since being diagnosed with their disease. I have none of these feelings about living with Crohn’s.
Having Crohn’s has kept me from doing a lot, even little things, like being able to get off the couch or fixing dinner for my family. It prevents me doing doing lots of bigger things, too.
When my younger daughter was 14 she had a huge crush on a television star who was coming to our state. I couldn’t take her; I was too sick. I was completely bed-bound and basically unable to get up. So, my husband drove from his office an hour away, picked up her and her girlfriend, and drove another hour to take them to see the star. I really wanted to go. I wanted to see her face when she saw his face for the first time and got to take a picture with him and squeal like any 14-year-old girl can upon meeting someone she idolizes.
Instead her dad took her, and he brought his iPad with him. I was lying in bed, barely able to keep my eyes open, when she showed up on my iPad and I could see the crowd screaming, pushing each other eagerly to get closer to their idol. But then my husband was directed to turn off his iPad and I missed her actual experience.
There’s nothing fulfilling about having to run to the bathroom 20 or more times a day. There’s nothing happy about being told there is little that can be done to help you. There’s nothing fun about feeling good for a few weeks while knowing it will end soon. Right now I’m tapering and almost off of prednisone. I’m already worried about what happens when I go completely off. My birthday is in a couple of weeks, and then a quick trip to Florida planned right after that. What if I get sick again? What if I’m too sick to go?
But so many other people say they are glad for their illnesses. I see it most in cancer patients, and I think I get that. Cancer patients are very sick for long periods of time, but then most of them do get better — all the way better. The illness ends and their new life begins. I can understand why they feel their illnesses changed their lives for the better.
The flu also is a good example of the patient getting really sick and feeling miserable for a week or two and then getting better. Anyone who has had the flu certainly can appreciate the feeling of their life returning to normal.
But with Crohn’s Disease? All I can hope for is a new or better drug to come down the pike. One that might put me in remission for longer than a few months. One that isn’t painful to take and doesn’t have a host of side effects that could kill me.
I guess the positive thing about Crohn’s is that I have learned patience. I’ve never been a patient person, but with this disease you need to be. So, maybe one good thing has come out of it, but I’m not happy I have it. I’m not feeling accomplished, brave or more appreciative of my life. Sorry, but that’s just how I feel.
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