WEGO Health Award!

Subtlety Doesn't Work with Crohn's

Many of us suffering from invisible illnesses like Crohn's Disease / IBD feel like we're constantly misunderstood by others - even our own friends, colleagues and family members, much less the general public or average Joe whom we encounter in day to day life.  After all, we look fine on the outside, so how could others know we feel like keeling over on the inside?  How would someone know that we'd spent 4 hours in the night laying on the cool tile of our bathroom floor?  Or face hours of agony, joint pain, steroid rage, depression and fear during a disease flare?

My top 2 pet peeve remarks about my invisible illness:

"You're such a picky eater!"  <<implying a certain lack of sophistication, or a certain je ne sais quoi naivete about the world>>

"You don't look sick."  <<implying my lack of well-being is all in my head or that I'm exaggerating how I feel for sympathy or, worst yet, hypochondria>>

We've all heard it, right?  Countless times.



It's easy to blame the "other" in life.  But to be honest, most people just don't know what it's like unless at some point in their lives they've faced an invisible illness.  One of my closest friends recently apologized to me after her Lyme Disease diagnosis, saying she'd never really understood what it was like for me, with my energy levels and abilities impaired.  She didn't need to apologize, but it was moving and validating that she was kind enough to do so.

It's up to us to educate others.

It's up to us to express what we need - to assert ourselves and not be afraid of what the receiver says.

Next time you hear, "you're such a picky eater," don't be afraid to reply:  "I actually love (fill in the blank, it could be nuts, beef, raw fruits/veggies).  I just can't have them because I have Crohn's Disease, which affects my ability to safely digest certain foods.  Please enjoy some for me!"

Yup.  The raw truth.

Who cares if Crohn's is unpleasant to talk about?  Who cares if we're at a dinner table and it's considered a faux pas to discuss digestion?  Those who matter won't care, and those who care don't matter.

Next time you hear, "You don't look sick," take the opportunity to explain invisible illnesses or use spoon theory to describe your day.  I often reply, "I have an autoimmune disease with debilitating symptoms all throughout my body.  I know I look fine on the outside, but I have good days and bad days, and today is a bad day with lots of pain and discomfort.  I appreciate your understanding."

Subtlety doesn't work with Crohn's.  We have to assert ourselves - even when that goes against our nature.  I don't like to draw attention to myself, so when a waiter balks at my order in front of a business luncheon with important clients, I'm embarrassed.  But many times, when I explain to others that I have Crohn's and it's not about dietary pickiness, often times someone in the group says they know a friend, family member or colleague with the disease.  It can even break the ice if you can laugh at yourself and not be afraid to educate others without feeling shame.

Once you get past the first time of asserting yourself, it gets a tiny bit easier every time.  Just remember there are so many of us Crohnies out there facing similar conversations all the time, and we're all supporting each other.  If I can do it, trust me - you can do it!

Crohnies unite!



Comments

  1. maegan@healthline.comMay 4, 2017 at 5:07 AM

    Hi,

    Healthline would like to congratulate you on making our list of the Best Crohn's Blogs of 2017!

    Our editors carefully selected the most up-to-date, informative, and inspiring blogs that aim to uplift their readers through education and personal stories. We’re glad to have you on the list!

    We’ve created a badge that you can embed on your site to let your readers know about your win. The embed code is at the link below.

    Winners list: http://www.healthline.com/health/crohns-disease/best-blogs
    Badge to embed: http://www.healthline.com/health/crohns-disease/best-blogs-badge-2015

    If you have any questions or need help embedding the badge, feel free to be in touch. Congratulations and keep up the great blogging!

    Warmly,
    Maegan

    --
    Maegan Jones | Content Coordinator
    Healthline
    Your most trusted ally in pursuit of health and well-being

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