Healthy Body
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Living With Invisible Illness
July 2025
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By Jill Valentino
Back in 1991, at age 13, I was diagnosed with Crohn's Disease, a chronic, inflammatory bowel disease characterized by inflammation of the gastrointestinal tract. Crohn's Disease is just one of many chronic conditions known as "invisible illnesses” (or “invisible disabilities.”) What is Invisible Illness? According to the Invisible Disabilities Association, an invisible illness is a physical or mental condition that is not visibly apparent. Yet, it can restrict someone's movement, senses, or ability to participate in activities. Invisible disabilities can affect people to varying degrees, from mild to severe. For instance, some people with invisible illnesses can live and work full-time without restrictions, while others on the most severe end of the spectrum cannot work at all and may even require assistance with their care. |
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Common physical invisible illnesses include:
Common mental invisible illnesses include:
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"Invisible illness encompasses a laundry list of conditions ranging from the common to the obscure. It's easy to imagine that people with heart failure, cancer, diabetes, depression, or dementia might fly under the radar despite dealing with frequent exhaustion, chronic pain, nerve damage, or trouble thinking or remembering. But perhaps more opaque are ailments with wax-and-wane symptoms, such as lupus, digestive disorders, multiple sclerosis, chronic fatigue syndrome, fibromyalgia, or rheumatoid arthritis, all of which affect more women than men."
~ Invisible Illness: More Than Meets the Eye, Harvard Health Publishing |
Challenges
While many disabilities can be identified by simply looking at the person afflicted, this is not true of invisible disabilities. Oftentimes, a person afflicted with an invisible illness, may seem completely healthy on the outside. And while that may sound like an upside, it can also bring a variety of challenges, including:
While many disabilities can be identified by simply looking at the person afflicted, this is not true of invisible disabilities. Oftentimes, a person afflicted with an invisible illness, may seem completely healthy on the outside. And while that may sound like an upside, it can also bring a variety of challenges, including:
- Disbelief and suspicion
- Judgment by others
- Skepticism and guilt
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Disbelief and Suspicion
Since invisible illnesses are, well, invisible, those of us afflicted often find ourselves constantly being asked to prove that our pain and discomfort are real — even when speaking with doctors! In one instance, the biologic drug I had been taking lost its effectiveness, causing a Crohn's flare-up, so the doctor suggested I switch. However, most biologics require the first dose to be administered as an infusion, a significant commitment in terms of time and money that must be completed at an infusion center. Since I would have to make an appointment, wait, have the infusion, and then wait again for the drug to start working, I asked the doctor to write a note to my employer requesting a medical leave to get my flare-up under control. He agreed to do so but only wanted to grant me a week's leave from my job. I knew, having had many flare-ups before, that I wouldn't be work-ready by then. So, I countered, requesting two and a half weeks instead. His response: "Really? You don't look that sick." You might encounter suspicion and disbelief, even among some in the medical community. |
"Invisible chronic illnesses and conditions significantly impair normal activities of daily living. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness, and 10% experience symptoms that are considered disabling (Shapiro, 2012). Invisible illnesses can hinder a person's efforts to go to school, work, socialize, and more. The challenges and impairment associated with invisible chronic illnesses can be difficult for others to recognize or acknowledge."
~ Ohio University Dissertations Center Abstract |
Judgment By Others
Judgment by others is another common challenge for those of us living with invisible disabilities. In addition to “You don't look sick,” I’ve heard a variety of comments, including:
Judgment by others is another common challenge for those of us living with invisible disabilities. In addition to “You don't look sick,” I’ve heard a variety of comments, including:
- "A lot of this is probably just in your head."
- "Maybe it's just stress."
- "You should try (insert diet plan or lifestyle change here). Note: Please do not take this advice if it hasn’t come from a medical professional you are working with.
With those close to us, typically close friends and family, it can be super scary for them when our affliction progresses; sometimes, it's easier if they pretend that nothing has changed. It took a long, emotional conversation with my husband for him to understand that I am not trying to avoid him or ignore him on weekends. Since my bowel surgery last year, where I lost three feet of my colon (just two feet or 40% remain), my full-time work week often leaves me exhausted and drained. By Friday night, I want to do absolutely nothing but sleep — sometimes, all weekend long!
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Additionally, any energy bursts I experience must be split between husband time, family time, and work for my job as a teacher. I live in constant fear that my Crohn's fatigue will take over before all my schoolwork is done. For many with invisible illnesses, like me, finding a work-life balance that makes everyone happy — family, friends, and employers — can be one of the hardest things in the world.
I'm still working on getting it right. Skepticism and Guilt
The fluctuating nature of symptoms that come with invisible illnesses can lead others to become skeptical. Are we sick or just lazy? Unfortunately, I have been on the receiving end of skepticism. During the COVID-19 pandemic, my school district granted my Section 504 request under the Rehabilitation Act of 1973 for an accommodation allowing me to teach virtually. Most teachers who did not have compromised immunity had to come to work and teach both in-person and virtually. I heard, more than once during that time how it “must be nice” that I got to stay home. What I didn’t say back to these people was that I’d rather be healthy and able to come into work. |
But I stayed quiet. Why? Guilt.
Though I have a disability, I know I look healthy, and this makes me look privileged to some when I receive accommodations. Even today, as my colleagues teach in the fierce June heat, I have the comfort of an air-conditioned classroom. I shouldn’t feel guilty, but I often do. I know I can’t teach in the heat without feeling faint or ride on a bus without a restroom to go on a field trip (I need to drive instead). But I still feel that guilt.
Final Thoughts
Despite the challenges, those of us afflicted with invisible illnesses need to remember the following:
Though I have a disability, I know I look healthy, and this makes me look privileged to some when I receive accommodations. Even today, as my colleagues teach in the fierce June heat, I have the comfort of an air-conditioned classroom. I shouldn’t feel guilty, but I often do. I know I can’t teach in the heat without feeling faint or ride on a bus without a restroom to go on a field trip (I need to drive instead). But I still feel that guilt.
Final Thoughts
Despite the challenges, those of us afflicted with invisible illnesses need to remember the following:
- Your health is paramount. Advocate for yourself or the results could be detrimental to your long-term health.
- Don’t be afraid to ask for help, as there are always ways to reciprocate the generosity of others.
- Living with an invisible illness is difficult, but it’s imperative to find ways to feel joy or be thankful for the positive aspects of our lives.
Additional Resources:
"The ADA: Your Employment Rights as an Individual with a Disability" (U.S. Equal Employment Opportunity Commission)
"The Challenges of Living with an Invisible Illness" (Psychology Today)
Invisible Disabilities Information (Invisible Disabilities® Association)
FACT SHEET: Your Rights Under Section 504 of the Rehabilitation Act (U.S. HHS)
"The ADA: Your Employment Rights as an Individual with a Disability" (U.S. Equal Employment Opportunity Commission)
"The Challenges of Living with an Invisible Illness" (Psychology Today)
Invisible Disabilities Information (Invisible Disabilities® Association)
FACT SHEET: Your Rights Under Section 504 of the Rehabilitation Act (U.S. HHS)
Jill Valentino is an educator, freelance writer, essayist, tutor, and educational video and teaching materials creator. Her work has been published in Good Housekeeping, Redbook, Country Living, Elle Decor, House Beautiful, Woman's Day, and Hudson Valley Parent magazine. She is a regular contributor for Sanctuary.
