Just Because You Have Crohn’s Disease, Doesn’t Mean You Have MY Crohn’s Disease
Today I wanted to talk about an issue within our IBD community. It has to do with commenting on other people's health and conditions by telling them what they should do.
One thing I am dealing with more and more, at the moment, is people thinking that they know (or can heal/cure) my condition because they have Crohn's disease themselves (or another gut condition).
Comparing our Crohn's
Over on Instagram this week, an innocuous post about the fact my bowel can't handle certain foods (it really does not like anything raw or green) lead to some comments about what I should try instead.
I'm all for people sharing suggestions and what works for you. At the end of the day, we all want to help each other and have good intentions. However, it becomes a problem when we assume what works for us will definitely work for another person, and can't understand that it just doesn't work that way. I received comments such as...
- Have you tried giving up x to heal your gut? It has worked for me.
- Why do you eat that?
- If you tried this diet, your gut would be healed.
- This diet cured my Crohn's.
Every Crohn's patient is different
Whenever I receive comments about people finding long-term remission from IBD, I am truly happy for them. And yes, of course, I wish I was in the same boat as them. But having had this condition for many years, I have started to learn that I can only know about my Crohn's disease and mine alone.
Sometimes my condition doesn't seem to match up with the accounts I read online or even the usual diagnostic checklists (hence why it took me so long to be diagnosed), but that's okay.
Similarly, I sometimes find myself reading accounts of those suffering from the condition and not recognising their experiences as my own either. For example, blood in stool is rarely a symptom for me but I know others who bleed even when their tests are normal. It would never occur to me to think I am dealing with my Crohn's better or I have the solution just because I'm not in that situation.
Our IBD can change on us at any time
The lesson I have learned from this is that it is utterly pointless to compare my symptoms, my illness, and my life to textbooks and others who have it because we really are all so different.
I know this even from periods of my life. How many times have you felt well and thought you had cracked it?
In 2013, I started a healthy diet and felt really well. I felt as if I had found a solution to my IBD and was so excited. However, a few months later I was struck down with perianal disease and several abscesses. To me, it was a sign that my knowledge of my Crohn's disease is only my knowledge of it in this very moment. I don't know how it is going to behave in a day, a month, or a year from now, and neither do any of us.
Let's share, but not compare
This is why we can only really try our best and not go the mindset of trying to outsmart or outrun a chronic, lifelong condition.
So the next time you are thinking of telling someone how to manage their IBD simply based on your own experience of it, please don't. If IBD should teach us anything, it should be that when it comes to our bodies, we know our own best, and having IBD doesn't give you the right to tell somebody else with the same condition what to do with their body.
Will you take our In America survey to help others understand the true impact of Crohn's and UC?