Medically reviewed by Jenny Blair, MD
Having an invisible illness comes with many struggles. A lot of the symptoms people with IBD experience may be hidden or unseen, things like:
- Abdominal pain
- Mental health issues
- Brain fog
- Joint pain
People can’t see that we struggle with these invisible symptoms, so they don’t know how we’re really feeling—inside or out.
What Lies Beneath
For me, dealing with a lot of physical pain often leads to emotional distress. Learning to cope with physical struggles is a huge challenge itself—but emotional struggles are often harder to talk about.
I know that I’ve had thoughts about not wanting to be in pain for the rest of my life. I’m afraid to talk to my loved ones about how I’m feeling physically and emotionally because I don’t think they’ll understand. And sometimes listening to ignorant advice from others can make those negative feelings you’re having about your condition even worse.
I’ve had experiences where people don’t believe the amount of pain I’m in. Other times, people are completely shocked and try to support me with sympathy. Sometimes hearing sympathy from others makes me feel like I’m inferior or broken.
The Frustrations of Living with an Invisible Illness
Getting Uninvited Because of Crohn’s
The frustrating thing about having an invisible illness is struggling with whether or not to tell people about how you feel. I don’t want others to feel bad for me or treat me any differently. There have been times when I’ve talked about my Crohn’s disease or have ended up in the hospital, and friends or loved ones will stop inviting me to events because they think I’m unreliable or inconsiderate. I just wish they would understand that it’s not that I don’t want to be there for them it’s the fact I don’t feel well. Not inviting me out makes me feel excluded and more depressed about my physical state.
Hiding in Plain Sight at Work
I constantly have to hide how bad I feel at work. I feel self-conscious. I am constantly running to the restroom, which I try to make inconspicuous as possible. I don’t want the people I work with to think I’m lazy and incompetent, or that my physical state can prevent me from doing a good job.
Some Doctors May Not Believe You
One of the most frustrating parts of this disease for me is when I feel like I’m in a flare, but my tests keep coming back normal. All I want to do is feel better. However, if my blood tests are coming back normal it is discouraging. I have had ER doctors who don’t believe me when I’ve said I’m in excruciating pain. I have been treated like a drug seeker and have had doctors who brush my symptoms off as “women’s problems.” My first flare up, I ended up really sick and hospitalized because several ER doctors could not figure out what was wrong with me. I ended up at three different ERs before they could figure out that I had Crohn’s disease.
But You Can’t Stop Living
I’m a gym instructor—and that’s not an easy task as someone with Crohn’s. My (gym) members often don’t know that I’m in pain. I have constant anxiety that I might have a bowel accident, pass out, or my members will notice I’m slow or off that day.
I’ve had people ask, “How do you teach your classes when you feel so awful?” or “How do you stay so active if you’re in constant pain?” My response? I can’t let a disease define me. IBD is not like the flu where you rest for a few days until you feel better. I’ve had to come to terms with the fact that I’ll have pain for the rest of my life, but I can’t stop living life.
Jenny Blair is a writer and journalist covering science, medicine, and the humanities. She earned her MD at Yale University, then completed a residency in emergency medicine at the University of Chicago. After several years in practice, she transitioned to working with words and ideas full-time. Jenny has contributed to Discover, New Scientist, Washington Spectator, and Medtech Insight, among other publications. She lives in New York City.
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.