Medically reviewed by Pat Bass, MD
How often do you look at someone and think that they have it all together? They look healthy, happy, fit and exude confidence. I do my best to portray that person on the outside to make up for what’s often going on behind the scenes.
No one would ever think that I just spent the day in the emergency ward or lost count of the number of bowel movements I’ve had that day. Whether I slept for 2 days straight or haven’t slept at all while suffering from chronic pain. After 10 years of living with an invisible disease, I often still feel ashamed or embarrassed by my disease and do my best to hide it until you get to know me.
But You Don’t Look Sick
Living with an invisible disease like IBD can be frustrating and isolating when others can’t see many of the symptoms for themselves. Unlike other diseases, IBD does not have many visible symptoms and it’s often hard for people to understand and have empathy.
I often find the hardest part about living with an invisible illness is that no one can truly understand what you’re going through unless you’ve been through it for yourself.
As much as your friends, family or doctors have empathy, it’s incredibly hard to understand how it feels to be chronically ill but look healthy like everyone else. Sure, you might have seen the person disappear at dinner, miss work for a few days or even spend a couple nights in the hospital but it’s truly difficult to understand what it’s like living with an invisible disease without going through it for yourself.
Please Cut Us Some Slack
If you truly want to help someone with an invisible illness, give them a break. I often miss social gatherings, family dinners or events. When I get sick, nothing makes me feel worse than bailing last minute and feeling like I’m letting my friends and family down. Unfortunately, that is sometimes the reality of living with an invisible disease.
Those living with an invisible disease may not always feel up to going to that party and socializing with 20 strangers, they may not always be able to attend dinner or drinks, they may have to cancel last minute.
Cut them some slack and do your best to put yourself in their shoes. Do them a favor by enjoying their company—judgement free—when they are around and feeling well.
As someone living with an invisible disease, it makes a world of difference knowing others understand your condition and respect your decision to put your health first.
Un-Learning Normal—A New Point of View
I had the opportunity to hear another perspective on living with an invisible illness from Courtney Maiorino (Facebook and Instagram), pictured above. Courtney is a Crohn’s patient and certified holistic health counselor living in Portland, Maine. She loves to help chronic illness patients incorporate holistic and intuitive tools into their treatment.
For Maiorino, a Crohn’s disease diagnosis drastically changed the way she interacted with the people around her. “Before Crohn’s, I’d hang out with friends and family with ease. I was able to meet new people seamlessly and the conversations flowed. I found it easy to relate to others due to having a similar perspective and lifestyle.” However, living with an invisible disease changed all of that for Maiorino.
“I have made a choice to change my entire lifestyle to be able to feel my best. As a result, some people have a hard time understanding my lifestyle choices without often seeing physical symptoms of my disease,” says Maiorino. Friends have come and gone, relationship dynamics have shifted, and I see the world—and my health—in a very different way, she adds. “Doing what’s right for me right for me and right for my health regardless of what others think is so important when living with an invisible disease.”
Do What’s Best for You
Maiorino’s advice to other people living with an invisible disease: Continue to do what you need to do to feel your best, no matter what that may be.
Find people who love and understand you as a person—and also understand why you live the way that you do. “This makes it easier to continue to manage your disease in a way that’s true to you, while also socializing at the same time,” Maiorino adds.
The Reality of Life with IBD
Living with an invisible disease is something everyone with IBD has to face. Although we all have different experiences, we can all relate to the struggles of managing a social life while living with an invisible disease.
By increasing awareness, more people can have a better understanding of the challenges people with IBD face when dealing with hidden or silent symptoms. Think twice when someone looks like they have it all together—you never know what they could be hiding.
Pat F. Bass, MD, is the Chief Medical Information Officer and an Associate Professor of Medicine and Pediatrics at Louisiana State University Health Science Center in Shreveport, Louisiana, where he also received his medical degree and completed his residency. He writes or medically reviews content for sites like Everyday Health, HealthDay, among others.
Oshi is a tracking tool and content resource. It does not render medical advice or services, and it is not intended to diagnose, treat, cure, or prevent any disease. You should always review this information with your healthcare professionals.