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It’s Been 5 Years, but I’m Still Not Sure I’ve Accepted My Diagnosis

This past December marked my fifth year having Crohn’s Disease.

In many ways, five years seems like a really long time: I’ve lived on different continents and embarked on two completely different careers during it. Yet, somehow it doesn’t really seem long enough to have fully come to terms with my disease.

First of all, as silly as it sounds, I sometimes forget I have IBD.

Crazy, I know, for someone who writes for a site called But if I’m feeling well, then it sometimes feels as if I’m just writing theoretically or about a distant memory.

Suddenly, I’ll spend a weekend in agony and I’m baffled by what’s happening. ‘Could I somehow have acute appendicitis? or a parasite?‘ I ponder until my husband reminds me I do actually have a chronic, severe illness of which stomach pain and diarrhea are the main symptoms. So, before I diagnose myself with something else from Google, perhaps it’s that disease I’ve had the last 5 years instead?

It’s hard when you can’t see what’s going on on the inside – if you feel well for long enough, you can somehow pretend it’s not real anymore. I can think back to the multiple times I was shocked to hear I had anaemia, or vitamin D deficiency, that I’d lost weight or my blood tests showed something concerning.

You would think I got used to all the blips, the ups and the downs that come with the disease- even when you feel fine but I haven’t. ‘These things often happen with IBD‘ my doctor would tell me’ when I seemed in disbelief that my body wasn’t operating at 100%.

Another part of this is ‘why me?’ syndrome.

This is something I struggled with terribly when first diagnosed but still rears it’s head occasionally. It’s usually when I’ve had a particularly bad week, month or year and see friends or family complain about things like losing weight or having a bad hangover.

I sometimes spiral into frustration and even try to figure out how I’ve ended up in this situation. Is there something – anything – I could have done differently? Is there something I could do now? Before I know it, I’m plotting my life history as if I can somehow travel time to solve a mystery. But there is no mystery, and despite my attempts, no case to solve. It’s just here, my disease, and I’m living with it.

Many days, I’m positive; in fact most days I am. I’ve even written before about how Crohn’s Disease changed me for largely the better. Because of it, I quit my job and went self-employed. I find myself less concerned about what strangers think of me and focus more on my loved ones. And I’ve undoubtedly become stronger.

But some days, I just want to ignore it

Just for a day, you understand. So I’ll put it off – whether it’s collecting a prescription, calling my doctor or acknowledging my symptoms – because I just don’t feel strong enough to accept what’s going on.

That’s not a solution of course and not something I’d ever advocate, but it sometimes takes real strength to fully acknowledge what you’re living with 365 days of the year. When I was diagnosed, I remember feeling like I’d never be able to get my head around living with this disease. Five years later, I’m slowly getting there and I can hope that in another five years time,  that I’ll be on the path to true acceptance.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • thedancingcrohnie moderator
    11 months ago

    I can so relate to this.

    I was diagnosed with Crohn’s in 2011 and I am STILL trying to get used to the fact that I have a chronic illness. It sometimes feels so strange to even say it out loud. But I do find, with time, I have become more open and have chosen to educate others. I am slowly accepting it more and more. Glad I’m not the only one!

    Always dancing,
    Elizabeth (team member)

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