Community Forum

Have a question, or want to share your own tips and experiences? Join the discussion in the community forum. You must be registered to participate. Our forums are moderated by Crohn's & Colitis Foundation staff to facilitate a safe environment.

Explaining your experiences


Thu, June 04, 2020 7:18 PM

Hello, I've been living with Crohn's for many years, and I count myself as very fortunate to have found lasting effective treatment. For many years this was not the case, and I struggled with cycles of flare up and management. However, I've found it difficult to explain the impact of the disease on my life. After repeated attempts I was unable to complete college largely due to flare ups. For some time I've done what I can in the working world but I've been stifled by the availability and quality of insurance. My real question is how do you explain a life shaped around Crohn's? I find it daunting to write a resume because for years my primary vocation was survival. Now that I'm "Healthy" I feel that I'm judged, professionally and socially, on lacking achievements that were more difficult or perhaps impossible for me. Are there advocacy groups or resources for people like me? If so, what should I look for? What kind of help is it reasonable to ask? Thank you

FPO Schl0488
Joined Jun 4, 2020

Thu, June 11, 2020 2:26 PM

Reply posted for Schl0488.

I can certainly relate.  I spent the first 37 years of my life chained to a toilet and avoiding any situation from having easy access to a toilet.  I always worried about it.  The mental anguish was as bad as the physical problem.  When I wasn't having a problem, I was worrying about the next attack. 

Like you, I found something that works.  It's been 15 years and I went from having diarrhea 90% of the time, to where I have it less than 10% of the time.  And I think the only reason it's 10% of the time, is sometimes I dont' follow my regimen.

I used to hide my problem.  But now I tell everyone because I found it avoids them drawing incorrect conclusions about my behavior when it seems odd.  People have been universally understanding.  If they aren't understanding, they aren't the kind of person I want in my life anyway.  When I explain to them the way my life used to be, you can tell they understand how bad that would be to deal with.  Everyone has their weaknesses, so most, if not all can relate because there's some issue that had kept them from reaching their full potential too.

Professionally, it was hard to get outside of my box when I was symptomatic, but I've done my best to make up for that lost time by being the person I knew I could be, without this severe achilles heel.  




FPO dcloes
Joined Jun 11, 2020

Related Topics

IBD and trauma
Author Image Janeliza
Joined Apr 13, 2022

Hi all! I've had Crohn's since 2014 with m....

read more

Veteran to Veteran
Author Image fzybkd
Joined May 13, 2022

Trying to find any other Veterans who have Crohn&#....

read more

Child with Crohn's missin...
Author Image Jerry WD
Joined Sep 28, 2022

Our 13-year-old son was diagnosed with Crohn's....

read more