A dull family photo where the person in the middle is isolated from the family members around them. The family is holding judgemental emoji face signs over their face.

When Your Own Family Cares to Know Nothing About Crohn’s Disease

Last updated: January 2023

Unfortunately, I know I am not the only one that experiences this, but how disheartening is it to know that your own family has not taken the time to research and learn about Crohn’s? Doesn’t it just make you so sad inside? So disappointed?

This post is definitely not intended to bash family or loved ones. It’s just a note on how complicated this Crohn’s journey can be. Being diagnosed with Crohn’s affects every single aspect of your life.

And it permeates and affects those closest to you as well. Everyone close to you, in some way, gets hit with the diagnosis and has to deal with the change in their way.

As for my particular family, I sadly have to say, that I don’t think they really truly know even the basics of Crohn’s yet, despite my repetitive efforts of trying to explain it. 

I was diagnosed ten years ago and still, I find myself breaking down the basics to those closest to me. This is crushing.

Feeling invisible when others don't understand

In fact, whenever I realize how little my loved ones know about my diagnosis it makes me feel a bit invisible. And don’t get me wrong, my family adores me and I adore them. I am lucky to have them in my life, as my family is extremely loving and supportive. 

Whenever I am in a flare, my loved ones make homemade soup, offer support, and truly are there for me. If I get landed in the hospital, someone from my family is there with me every day. I am truly very lucky.

But it just boggles my mind sometimes that they see me suffer. They watch me lose weight, get pale from extreme anemia, go to the hospital for infusions, cry from pain, moan from the horrible fevers and beyond, yet I don’t think one family member could tell you where my disease is located.

Should I be better at explaining Crohn's to my family?

Perhaps the issue is me. Maybe I should really take it upon myself to educate my family, although I feel like I already do. I’m always correcting whenever someone gives advice that makes no sense. 

I calmly say, thank you for the advice but Crohn’s is more complicated than that, here’s why...” But clearly, these conversations aren’t enough. So maybe I need to be more proactive myself.

Maybe I should give printouts of overviews so that they can read for themselves since it is so important to me that my loved ones understand.

I wish my family would understand this after years

I’m not sure. But I guess my feeling is that after ten years of dealing with this illness, I would think they would understand Crohn’s a bit more. 

I do feel a bit sad when I meet other Crohn’s patients and find that their family and loved ones are actually the ones showing them new research and findings that they discover on their own. They are constantly educating themselves in hopes to help, and certainly, my family is not that proactive.

Can you relate? How much does your family or those closest to you know about Crohn’s disease? Share below, we love to hear from you.

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