Being IBDVisible

We all know what it’s like to feel invisible at some point in time—the feeling of not being seen or heard by those around you. Typically, the feeling doesn’t last long-term. But for people living with Crohn’s disease or ulcerative colitis, the feeling of being invisible is something they combat in everyday life. 

Crohn’s and colitis are considered invisible illnesses because the diseases aren’t visible on the outside. So, while someone may look fine, their intestines may be inflamed and ulcerated, they may be in excruciating pain, and their immune system is essentially attacking itself.

But having an invisible illness encompasses so much more than just the internal disease symptoms. People with Crohn's disease and ulcerative colitis often struggle with the impact on their mental health. In fact, rates of depression and anxiety among IBD patients are higher than the general population. And a recent study published in Inflammatory Bowel Diseases suggests that up to 32% of IBD patients may experience post-traumatic stress symptoms.

We reached out to our social media community recently to find out how they describe what it’s like—emotionally— to live with an invisible illness, and here’s what some of them had to say:

“Constant fear and anxiety”
“It takes a toll on you”
It feels like no one cares because they think you’re lying. That can feel heartbreaking.”
“Frustrating, overwhelming, depressing, misunderstood.”
“You feel like you need to act tough when all you really want is to break down.”
“Like I have real symptoms, but it always feels like it’s all in my head.”
“Difficult and lonely at times as nobody really understands, especially the fatigue.”
“I feel inferior and not accomplished.”
“It feels like constantly needing to justify why you feel the way you do.”
“Sometimes it can feel really isolating and scary. Other times, I feel like a superhuman!”
“Lonely but [also] empowering to know you’re stronger than something vicious, even on hard days.”

The word that came up most frequently was exhausting- that having an invisible illness is both physically and emotionally exhausting. This response sums it up best:

“[Living with an invisible illness is] exhausting— you feel the weight of [your disease] every day but no one sees how much you’re carrying.”

Feeling invisible is never something anyone should feel, especially those living with debilitating chronic illnesses. That’s why we work so hard to raise awareness of and familiarity with Crohn’s and colitis. By doing so, we can not only support patients throughout their disease journey but also enable earlier diagnosis of IBD and encourage under-treated populations to seek out more information and get better care. We also hope that increasing awareness and familiarity will encourage more people to speak about their disease and help reduce stigma associated with IBD. We’ll be exploring this topic in depth during our 2019 Crohn’s & Colitis Awareness Week campaign—visit our website to see all the ways you can get involved!

We are also going to be highlighting the invisible nature of Crohn’s and colitis as the underlying theme of our brand-new blog, IBDVisible. We wanted to create a platform where all members of the IBD community—patients, caregivers, healthcare professionals, advocates, and more—can come together to discuss everything related to IBD, both the visible and the invisible. We hope that you’ll visit the blog frequently to read more about disease management, research, patient and caregiver stories, and so much more. And if there’s a topic you want us to cover, please let us know! You can email your ideas to [email protected]

Most of all, we want you all to know that we see you. We see your pain and struggle. We see you battle the physical and emotional symptoms that these diseases cause. We see you navigate the insurance battles and financial hardships. And we see you being strong and inspiring. You are always IBDVisible to us.

Rebecca Kaplan is the Public Affairs and Social Media Manager for the Crohn's & Colitis Foundation and the caregiver of a Crohn's disease patient