Just because I talk about my IBD every day doesn't mean it controls me
Last updated: December 2020
So today I want to talk about something that has been really frustrating to me. Lately, I've been trying to be as open as I can about my journey with Crohn's disease and do this on my Instagram. I talk about it a lot and I also write about it, just as I'm doing right now!
Looking good does not equal feeling good with Crohn's
I recently posted a video all about a scenario we're all familiar with: how I looked perfectly healthy on the outside but the inside is completely different.
My PillCam recently revealed that I had inflammation in my ileum and I was trying to get people to understand that when I'm ill, and when I'm healthy I don't really look that different on the outside (in fact, since my Crohn's is in the small bowel it often doesn't show in other tests either!)
I'm really glad that I had a really positive response, except for one comment that irritated me so much that I decided to write about it on here today.
Crohn's disease does not control my life
The comment, among so many other positive ones, was that I shouldn't let my IBD control my life. It got me thinking...
I actually don't think I let my Crohn's disease control my life. I have a family, I have friends. I have a job. I write for publications such as this website. I have a nice house. I have a dog. I've traveled the world.
A version of my life when I don't have IBD would undoubtedly be better but on the other hand, I doubt that many things would be as different as I'd imagine: I'd be healthier and happier, but I'd have still achieved the things that I wanted to achieve.
Positive outcomes to life changes from Crohn's
And, very fortunately, there is nothing that I've really wanted to do that I haven't been able to do because of my IBD. I realize I'm not necessarily speaking for everyone here: of course, there are many things that could be impacted by IBD, for example not everybody's dream life is one that is compatible with IBD: whether that's living in a country with poor hospital care; not being able to socialize or a career that just doesn't work with a chronic condition.
I know many people who have had to make a career change (me included!); lost out on friendships and relationships or missed out on their goals and dreams because it just didn't seem feasible with a chronic condition like Crohn's disease.
However, making these changes in your life doesn't necessarily mean that your IBD is controlling you either. I left a career in teaching largely because I found it too stressful, managing my IBD with teaching in the classroom.
However, the outcome has actually been really positive and I see it adapting and changing rather than controlling.
Accepting limits and adapting to life changes
Similarly, having those days where you can't do the things that you want to do, where you can't to that event; where you can't meet that deadline, or where you have to accept that you can't go to that party isn't necessarily control. It could mean you're learning to adapt and change and those canceled plans could help your body recover quicker and you feel better to tackle the week.
There's a complete difference between accepting your limits and adapting your life to make sure you can live as full life as possible and letting your illness control you.
I talk about IBD a lot and there's no doubt it's part of my day: whether it's taking my meds morning at night, canceling plans for a hospital appointment, or writing about it here. However, I talk about my son a lot too. I talk about the trash TV I watch in the evening. Sharing all aspects of my life means I've accepted IBD is a part of me rather than controlling me.
I'd love to hear your thoughts on this. Do you think your disease controls you? Is that necessarily a bad thing or could it be possible? Do you think that talking about something, and being honest about it could mean it's too big part of your life?
Does living with IBD impact you financially?