I am often asked what living with Ulcerative Colitis is like. I think that is a great question. It is difficult to understand what it is like to live with chronic disease, unless you have experienced one or talk with someone who has.
One of the most interesting things that I have had to grapple with is the fact that Ulcerative Colitis IS chronic. It won’t go away. I know that probably seems obvious. But every other experience in life I had with sickness or disease was temporary. And although mentally I know what chronic means, it has been difficult for me to process this without a past experience to hang my diagnosis on.
Chronic means forever. Not a day or a week or a month or a year. Sure, it is possible to experience periods of remission, but, bar a miracle, it will not just permanently go away. And although I am doing well, considering, right now UC is something I have to deal with every. single. day. There are no vacations.
Chronic disease puts a person at a higher risk for depression and I can see why. It’s not like the flu or a cold or the chickenpox that run their course and then you’re better. I’m constantly trying to manage the symptoms of my disease with diet, lifestyle, and medication. Some days I feel great, other days – not so much.
And it is not always the UC, per say that is bothering me (although there certainly is that). Autoimmune disease comes with a whole host of weird, seemingly unrelated symptoms. Like I run random fevers and will have flu-like symptoms. I have had to cut back on the intensity of my exercise because of this. No more running. I sometimes experience soreness/ swelling in my joints too. Like, about two weeks ago, swelling in my ankle made it painful to walk. I felt like an elderly person, ha!
Also, it’s been weird for me to think about how having Ulcerative Colitis shortens your lifespan by an average of 10 years. Certainly there are more life-threatening diseases. But to know that my life is likely to be shorter is none the less strange to consider. We all hope to make it to 90, ha!
And when I think about my father’s colon cancer, something I am at high risk for with UC, I could easily begin to worry. Especially when I think about what this could mean for my girls and my sweet husband, who has already lost two parents to cancer.
But I am really, really trying to surrender, because worrying won’t change a thing and acceptance allows me to live the years I am given, many or few, to their fullest. None of us is guaranteed tomorrow, anyway.
All of this said, I am doing surprisingly well. I feel incredibly blessed. Especially since I have heard and read horror stories about others with my same disease. I strongly believe that modifying my diet and adding probiotics/vitamins has been hugely beneficial. That, along with a small amount of medication, has kept my UC mostly under control. My symptoms now are nothing compared to what I experienced those first few months.
Like every other trial in life, I have a choice. I can resent and “fight” and “reject” chronic disease, feeling sorry for myself every step of the way – which does me and the people my life touches no good. OR. I can surrender and accept my lot in life, chronic disease included, and watch something beautiful transpire. I know from experience that hard things in life can help us grow in ways we never dreamed, if we let them. That is always good for us AND others.
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