What it Means to Live With a Chronic Illness

“We who suffer from chronic Lyme can only ask for our loves ones to try to understand and be compassionate about this invisible disease.” ~ Yolanda Hadid

This quote by former model and TV personality, Yolanda Hadid, is a sentiment that I have heard time and again by so many in the chronic illness community. Particularly in the Inflammatory Bowel Disease (IBD) community.

Invisible to you, but not to me

It’s true that the symptoms of Crohn’s disease or ulcerative colitis (UC) don’t always present themselves in ways that can be seen. But it’s also true that the sufferer is very, very aware of the disease’s presence in their lives every second of every day.

You won’t see the busted guts; the bleeding, ulcerated intestines that cause intense pain day in and day out. The intestines that have betrayed me. The very intestines that were designed to execute a very important function in the lives of every living being on the face of the planet. You don’t really think about your bowel habits until they start malfunctioning. I know, because I was that person at one time.

It’s not just the bleeding intestines

Other things you won’t see are the endless, sleepless nights of pain. I can’t tell you how many times I lay on the floor of my bathroom puking and pooping my guts out only to force myself to go to work the next day. You won’t know about how on my way to work, I pooped my pants because I couldn’t physically hold it until I made it to the bathroom. Don’t even get me started on the embarrassment and shame that also come with these diseases! Another invisible aspect of Crohn’s and UC.

Pills, pills, pills

I once counted taking upwards of 20 pills a day. These pills only mask the symptoms… and even then, they don’t provide relief 100% of the time. Just ask me about being on prednisone and hydrocodone as well as my “normal” IBD medicine at my sister’s wedding. It was one of the hardest things I had to do, hobbling down the aisle with my achy joints, moonface and hemorrhoids the size of grapes, knowing that two days after the wedding I had to have major surgery. But I love my sister and there was NOTHING that was going to keep me from being there for the most important day of her life.

The effort of living with a chronic illness

You may think that just because we can hold a job, participate in things like weddings or family gatherings, and the fact that we look well, means that we aren't as bad off as we say. But that’s not the case at all. We HAVE to hold a job so we can afford our medications. Unless we want to be lonely with only our toilet and bed for company, we have to force ourselves to get out and live our lives. And makeup can do wonders for someone with pale skin and bags under their eyes from lack of sleep. Add a good outfit and you’re good to go!

This is what it’s truly like to live with a chronic illness. My hope is that everyone living with IBD will be able to get through to those “loved ones” who “don’t get it.” To those loved ones, please, do your best to reach across the aisle and see where we are coming from.