Handling Grief After Your IBD Diagnosis: My UC Story

Patient Expert
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Real talk: When you catch a cough that won’t go away, or get a sore throat, or come down with a sinus infection, you may dread going to the doctor. But you suck it up and go with the expectation that you’ll get those magical antibiotics to wipe out whatever bug has invaded your system. Then you go home to rest and eventually return to the world feeling brand-new.

So what happens when you start getting some stomach cramps, and then maybe you can’t get to the bathroom fast enough, and you feel awful? As usual, you dread going to the doctor, but you suck it up and go. That doctor maybe sends you to see another doctor who then orders a procedure you thought only your parents or grandparents had to worry about. And then you go and get that procedure and wake up to some crazy pictures of your insides and a diagnosis that won’t go away over the weekend with some rest and antibiotics. It’s inflammatory bowel disease (IBD).

How do you even deal with that? I felt robbed of my body, my health, and my life. At 23.

First, I denied it. Surely, I didn’t have IBD (in my case, ulcerative colitis). There was no way! I was 23. I was young. I was healthy! I felt fine. I was going to continue to eat the way I always did, and do all the things I used to do before my diagnosis.

Second, I was angry. What could I have possibly done to deserve this? I remember slamming a lot of doors and driving around with really loud, angry music on. I hated the world. This diagnosis didn’t make sense, and I was so mad that my body had decided to fail me. So, I took it out on just about everyone.

Third, I tried to oddly bargain. I’d think, “Today, I’ll take care of myself so I can head into tomorrow eating and drinking just like normal, without taking pills.” Or, I’d think, “Today I’ll go to bed early, and then tomorrow I’m going to a party after my 8.5-hour workday.”

Then, the depression hit. I wouldn’t get out of bed unless I absolutely had to. I didn’t want to see my friends or family. I didn’t want to talk to anyone. I was so devastated. I felt like I lost someone. I didn’t want to be in the small percentage of people who are viewed differently because of their health. I wanted to curl up in a ball and disappear. I felt like a burden. I felt like a joke. I was so hopeless. And I wallowed in that hopelessness for a long time.

I don’t remember when the switch turned on, but suddenly, I came to accept this lifelong diagnosis.

If you didn’t catch on, what I’m saying is it’s completely OK to grieve when you’re given this diagnosis. You can go through those phases of grief just as you would if you lost a family member or loved one. Because, unfortunately, with this diagnosis of IBD, you do lose someone you loved.

There seems to be this ideal in society that you’re supposed to receive a lifelong diagnosis like IBD and smile, think positively, and make the best of it — and then it suddenly becomes better. Like I would realize, “Oh, I just put a smile on my face and thought of a rainbow, and now my IBD no longer bothers me, and I’m going to tackle the world.”

No. It’s not going to work that way. And four years after my diagnosis, it STILL doesn’t work that way. I have hit the land of acceptance, but sometimes I find myself back in the land of denial, or depression, or anger. Going through those phases is normal. It’s healthy to go through the phases of grief with your diagnosis, and it’s OK to take time out to grieve. This is your diagnosis and your life. You’ll figure out how to handle it. And the rest of the world might not get it.

So embrace the loss. Know that you’ll have easy days, and then you’ll have some hard ones. Talk to someone who might know a little more about what you’re going through; someone who can help you cope, grieve in a healthy way, and then add another notch to your belt of badassery.

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