Support & Empathy Can Make All The Difference
To say that living with any kind of Inflammatory Bowel Disease (IBD) is a complete killjoy is an understatement. Ulcerative colitis has robbed me of my joy, confidence, and determination on more than one occasion. I can’t tell you how many sleepless nights I spent wondering if I was going to live to see another day. Or how many family get togethers I had to avoid.
I’ve had to blow off my “healthy” friends dozens of times. They don’t understand the battle that my body fights day in and day out. They don’t understand that I’m not blowing off their parties just because I don’t feel like going. They don’t understand that I cannot physically drive hundreds of miles to have a fun-filled girls’ weekend. They don’t understand when they ask if they can crash my place for a night as they pass through my town it is a great imposition because I only have one bathroom and one bedroom. They don’t understand that just because I’m in a “good place” with my current treatment, it doesn’t mean I’m cured. It doesn’t mean I don’t still have bad days. I can’t just press a button and magically be ok.
When I got into advocacy, it was a relief to meet people and know that I’m not alone. When I got into advocacy, I finally met people like me. I finally felt like I had support. My first Crohn's and ulcerative colitis get-together was so freeing!
I had to fly there and the airline caused me to miss my connection. They also lost my luggage. When I finally arrived at my destination, I was exhausted, had a splitting headache and extremely nauseated. I didn’t know what to do. I was hesitant to tell my new friends that I was not feeling well. I hated having to explain to everyone that I felt like garbage and needed to sleep it off for the rest of the night. I didn’t want to tell them that I had just puked my guts out five minutes before walking into the room. Would they think I was trying to get out of socializing with them?
When I finally got up the nerve to tell them what was going on, I was floored by the response.
“Hey! Are you ok?”
“Do you need something?”
“Don’t feel like you have to sit through this dinner all night.”
“Go to sleep if you need to!”
“We totally get it!”
“Do you need something to sleep in?”
These people didn’t roll their eyes in disgust. They didn’t think I was lying or making up excuses. They didn’t get annoyed and make snarky comments. They showed me compassion. How could they not? They’ve all been in my shoes before. The support that I have found in the Crohn’s disease and ulcerative colitis communities has been so overwhelmingly positive.
It is for these reasons that I always tell people that support and empathy is key when learning how to cope with chronic illness. My husband and family have always been supportive and it’s great… but to actually have people understand and empathize was so incredibly freeing for me. I know that ulcerative colitis has brought us together in a way that nothing else could. So, please! Go find support from other patients. You’ll be glad you did. I promise.
What type of IBD have you been diagnosed with?