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When Those Closest To Us Just Don

When Those Closest To Us Just Don’t Get It

It is common for individuals who suffer from a complex, chronic illness like Crohn’s Disease or ulcerative colitis (IBD) to feel like most people don’t understand what they have to deal with. Not only on a day to day basis, but also the enormous “side effects” (as I call it) that come with life as a chronic illness patient. For example, the guilt so many of us carry, or the fear of the unknown that often comes with living with such an unpredictable disease.

There are so many things we have to deal with as inflammatory bowel disease patients that are truly impossible for someone to grasp if they don’t live with it themselves. Then, there are aspects about our life that only those who live with us or who are very close to us can really understand. The latter is what I want to talk about in this article.

Does it ever make you feel like you’ve been punched in the gut when someone who you feel should get it makes some sort of comment or action that flat out reveals that they really don’t have a clue?

While I don’t expect anyone to understand my thoughts, feelings, and actions 100%, there are certain people in my life who I do expect to understand and/or accept certain things because of how close they are to me. I expect these things from some people because they have a front row view of my life… not parts of it, not what I choose to share on social media, but a true understanding of everything I go through and have experienced in my life and the toll it has taken on me. Not to mention, the cumulative effect living with a chronic illness can have on a person.

I will be the first to admit it:

Being diagnosed with ulcerative colitis at the age of 13 screwed me up in many, many ways!

I also know I am a very sensitive person and take things people say to heart. However, I know deep down in my heart and soul that I have done and continue to do everything I possibly can to help myself. By that I mean in every way – physically, emotionally, socially, spiritually, financially, etc.

I am not saying I have handled every situation perfectly. I haven’t. I am also not claiming that I have all the answers to everything that has been thrown at me. I don’t. I am lost most of the time. BUT, I do know that I know myself better than anyone. I know how my heart feels, I know what my soul desires, and I know what my body and brain can tolerate. I also know that so many of you reading this also understand yourself inside and out. It is a by-product of having a chronic illness, in my opinion. We do come to a deeper understanding about who we are and how our bodies work better than we would have had we not been stricken with IBD. Sidenote: I would rather have never heard of inflammatory bowel disease and just know myself like your everyday average person. ; )

If you are someone who has a hard time hearing certain things from loved ones who you feel should have a better understanding, or from someone who claims to really get it, you are very far from alone. Words always hurt, but they hurt a hell of a lot more coming from someone close to you. When someone who knows what it is you have to deal with and all of the challenges you have had to overcome and continue to face makes a comment, it can be taken as judgmental. Sometimes it might be coming from a place of judgment, while other times, we may just take it that way. Either way, it hurts!

We all do what we have to to survive. Never, ever, ever feel badly about living your life the way you feel it needs to be lived.

Can you relate to this at all? Do you ever feel like a lack of understanding or empathy from a close loved one triggers something in you? Does it make you doubt yourself? Any tips for others struggling with this? Has this been something that has impeded on many relationships? Have you never experienced this? Let’s talk more about it!

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
    1 year ago

    I definitely can relate. It’s hard when someone close to you says a comment that just throws you off. I always try my best to not let it harbor in my heart. I just always tell myself that they didn’t mean it and it’s coming from a place of not understanding. It is definitely hard though!

    Always dancing,
    Elizabeth (team member)

  • kathrynthuma
    2 years ago

    I’ve had a savage bout with Crohn’s disease since age 16. Hospitalizations, surgeries, pain, whole months at a time unable to eat, and at one dark period, between ages 38-44, rectal incontinence.


    I had always pretty much been treated as the family screw up, the loser who wouldn’t amount to anything. But one day… my dad, who had a front row seat to my struggle day after day… one day barked at me, “I’m getting sick and tired of this shit!”
    I realized then, I was alone. It’s now about 25 years later, and I’m still alone. My folks & family are long gone. My body is starting to break down so it’s getting harder to manage. One day, I’m sure it will just stop… but at least I don’t have to deal with clueless people!

  • Marisa Lauren Troy moderator author
    2 years ago

    I greatly apologize for the delay in responding to you, Kathryn. My heart really breaks for you! I truly don’t have a clue how you handle everything that comes with this disease alone. Seriously. I am so sorry you have to! I agree that being alone is easier than being with clueless people or people who make you feel worthless for reasons way beyond your control!!! You definitely don’t deserve to be treated that way. Please know we are always here for emotional support.

  • Sickforever
    2 years ago

    Yes you get it from everyone even your so called gastroenterologist,friend’s, family, pharmacists that question why your all these meds. I am sick of explaining myself to everyone. I handle my situation just by mostly ignoring stupid people ! I give up !!!!

  • Marisa Lauren Troy moderator author
    2 years ago

    I sincerely apologize for the delay to your incredibly spot on comment. Everyone seems to feel the need to get involved. It gets exhausting trying to explain your situation to people and it can make you feel a bit crazy in the process. Please know so many others get it and we are always here for support.

  • Sickforever
    2 years ago

    Thank you Marisa for your nice comment. It’s nice to have people who are on this site that truly understand us !

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