Handling the Naysayers
Unfortunately, if you're a patient or a caretaker... there's a good chance since diagnosis you've encountered people across your journey who have downplayed or questioned what it's like to live with inflammatory bowel disease.
Is it because Crohn's and ulcerative colitis are invisible illnesses? Is it because there's a lack of education and awareness about our diseases? Is it because people don't like believing a loved one, co-worker, or friend suffers in a way that's hard to explain?
In my nearly 12 years battling Crohn's, I think it's a mix of all the above.
It's hard to put into words how disheartening it is when others act as though what you are enduring is no big deal. Just because you haven't been hospitalized with a major flare up in a year, doesn't mean the disease hasn't been a part of your daily life. With social media, it seems people either share the most magical moments in their lives (engagements, baby announcements, big moves and landing impressive jobs)... or the tough days (hospitalizations, deaths of family members, friends and pets or hardships), but never the days in between. When you think of the mundane moments that you choose not to share, it's very similar to what it's like with a chronic illness.
The majority of us battle our disease in silence, day in and day out... most of the time with a smile.
There have been times friends have made comments that while not malicious, seem to downplay inflammatory bowel disease. Whether it's comparing it to some catastrophic terminal illness or a surgery their family member has to have. We get it, it could be worse... but, you know what? It could be A LOT better, too. While we don't want pity or sympathy for a disease that's out of control, we do want support. We do want those around us to recognize that living life with a chronic illness no matter what your age is no walk in the park. We want to be comforted by knowing we have a support system who empathizes with us and doesn't question how much pain we are in or wonder if we're making excuses to get out of social engagements.
The fact of the matter is, if those of us with Crohn's and ulcerative colitis shared every pain, every worry, every struggle... then it would be overwhelming for you and for us. None of us want to be defined by our illness, but it's a part of what makes us who we are. Communicating our needs and our fears is cathartic and helps us deal with a disease that will be with us every single day of our lives.
So, here's my call of action to all the down players and naysayers.
Take a moment to think about how you would feel if you were told you had an illness that would be with you for the rest of your life. An illness that has no cure. An illness that rears it's ugly head whenever it wants, without any warning. A disease that can't be seen by others. Then, the next time you hear of a family member, friend or co-worker say casually, "I have Crohn's disease"... show some heart and some interest. Be the compassionate person they can count on. Because trust me, your thoughtfulness and kindness will only continue to inspire those around you and help lift the spirits of those who need it most.
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