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A Letter to my newly diagnosed self…

To my newly diagnosed self (in 2013),

I’m nearly six years into this Crohn’s malarky now so I thought it only right to look back and give you some much-needed advice! Strangely, I know you are actually really excited right now. And I understand. You’ve been told for SO long that there’s nothing wrong with you but now you have a name. An actual diagnosis. Now you can get your life back, they can treat it and you can stop second-guessing every single thing you eat.

Living with Crohn’s is not simple

Sadly, I’m afraid it won’t be that simple. Yes you have Crohn’s Disease and it’s very real, but a real diagnosis doesn’t mean the end of it all. It’s only the beginning. Whilst it really is a relief to know what your body is doing, you’ll likely look back at this moment and have a little chuckle and how easy you thought it was going to be.

Once you’ve got over the excitement of knowing what is wrong with your colon, you’re going to enter the next stage: shock. The doctor is going to use a lot of long words and say serious things about serious medication whilst pulling a serious face. You’re going to then try to google all of these things and end up in a state of shock. How can I possibly have such a serious condition? you’ll ask. You look fine! You work! You travel! You’re young!

I wish I could tell you to step away from google but it would be hypocritical as I still use it all the damn time. But I promise you will get used to the jargon and whilst you’ll have a complete meltdown the first time you read the medication side effects, each day will get a little easier and the drugs will seem a little bit less scary. They’ll become a part of life that you just get on with.

There is no logic behind IBD

If there’s one piece of advice I’d give you, it’s to not keep trying to find a ‘solution’ or a logic to this disease. As it turns out, you’ll end up spending years feeling as if you could just get it within your grasp if only you tackled your stress/worked on your diet/slept the perfect number of hours a day.

Yes, these things are important (for anyone’s health, IBD or not) and diet will play a big role in helping to manage your symptoms. However, you’ll also have those flares that come out of nowhere with NO explanation whatsoever. You’ll have times when drugs don’t work. You’ll have times when you feel fine but your medical results are not and times where your blood results are perfect but you can’t drag yourself out of bed. It took me years to finally accept that this disease has no logic at times, however much you want it to. The sooner you do this the better.

Struggling to accept IBD

And there’s another keyword: acceptance. Something you’ll struggle with a lot. At first, you’ll struggle to accept that this disease is with you for the long term and that your life will need to change. You’ll be resistant to talking about it or admitting you probably can’t keep doing all of the things you had done before. To stop drinking as much when socializing or to point out to your employer that you actually need a sick day might seem as admitting defeat but remember that accepting something isn’t the same as giving in.

A different life is not always a bad thing

And a changed life doesn’t necessarily mean a worse life. Just a different one. You’ll realise this when actually you end up doing a job you love (in 2019 you’re a freelance writer and thrive on being your own boss) and the life you lead in many ways is more relaxed and happier. Yes you might not have many late nights but you’ll actually enjoy long country walks with the dog or curling up on the sofa with a good book, I promise. And your relationships (with those worth being in your life) will actually become stronger and healthier once you’ve accepted change.

Life changes us so it makes sense this disease will too. Don’t fight it. You will inevitably become a different person with different priorities. The way you see the world and your body will change too. When you’re ultimate aim is to simply be well, somehow the little things do seem less important somehow. Finally, one day you will realize how much stronger you’ve become too. Because with a disease like IBD, there really is no choice but to keep fighting. And whilst you might not win every single battle, you’ll make damn sure that Crohn’s Disease doesn’t ever truly defeat you.

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
    9 months ago

    Great letter. I truly loved reading this and the ending is empowering. Thank you for sharing, and congrats on coming so far and fighting like a warrior.

    Always dancing,
    Elizabeth (team member)

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