When you think about a disability, one that requires a mobility device or that’s visible in some form probably comes to mind. However, a majority of people who have a chronic health issue actually live with an invisible illness.
“Invisible illness” is a catch-all term for a wide range of health conditions, including mental illnesses, diabetes, fibromyalgia, epilepsy, autoimmune disorders and many more. It’s estimated that a majority of people with an illness have one that most people can’t physically see.
Though invisible illnesses and their symptoms differ from person to person, those who have them often share similar experiences with stigma, discrimination and misconceptions. HuffPost spoke to people with invisible illnesses about what they want others to understand about living with their health conditions:
Invisible illnesses are just as real as visible ones.
Though you may not be able to see an illness, it can be just as serious and affect someone’s well-being as a visible one.
“When I talk about my visible illnesses, people respond with sympathy, fascination and genuine concern,” said Megan McLaws, a 22-year-old social media manager who has both visible and invisible disabilities. “When I talk about my invisible conditions, I’m met with skepticism, doubt and more judgment.”
It’s sometimes difficult to receive appropriate accommodations.
Though they are legally protected under the Disabilities Act, people with invisible illnesses have largely reported that they struggle to receive accommodations in the workplace or they simply choose not to disclose their disabilities out of fear of stigma. In fact, the majority of the employment disability discrimination complaints that were filed with the Equal Employment Opportunity Commission between 2005 and 2010 cited invisible illnesses, according a 2015 report from NPR.
Moreover, someone with an invisible illness who does not regularly use a mobility device may still need physical accommodations so that public spaces, workplaces or events are accessible to them.
“I don’t need my cane often, but I always need access to seating that’s not the floor, and it’s hard to advocate for myself with strangers knowing that to them I ‘don’t look sick,’” said Adrian Mirror, a 29-year-old singer.
Invisible illnesses can make it difficult to live in the moment.
People with invisible illnesses are sometimes perceived as “lazy,” but in truth, living with a chronic health condition can be utterly exhausting. Weathering an influx of symptoms, a depressive episode or chronic pain — on top of standard life stressors — requires a ton of energy.
“I so desperately want to be healthy and present for all of the beautiful, important and intimate moments us humans get to experience in life, but in reality, my illnesses will get in the way of that sometimes,” said Caitie Gutierrez, 29, a mental health and chronic illness advocate. “It would be a lot easier to cope if the abled people around me understood that.”
Having a “good” health day doesn’t mean you’re cured.
People with invisible illnesses can have symptom-free days or effective plans to manage their conditions, or they may choose altogether not to disclose what health issues they’re experiencing. Yet, none of these things mean their health conditions are magically cured.
“I am always dealing with symptoms, no matter how ‘good’ of a health day it is,” said Ariel Taranski, a 28-year-old social media manager. “I can put on makeup, some nice clothes, a happy face, and look my absolute best, but still feel totally miserable.”
“‘Fixing it’ isn’t always a viable answer,” added Kim Gabbitas, a 24-year-old grant writer. “I never got a diagnosis, but I also never found a solution. I just gave up on working with doctors because the constant hamster wheel of tests, scans, diets and specialists was humiliating. I’m always afraid of having another flare up.”
Stigma makes it harder to seek effective treatment.
Navigating stigma and discrimination can, at times, be just as difficult as navigating the invisible illness itself.
Sasha, a 29-year-old communications manager who lives with borderline personality disorder, has experienced that firsthand. Sasha, who wished to withhold her last name for health privacy, said some people “still avoid borderlines because they think there is no hope, but with proper treatment and support, borderline can be managed quite well.”
Research shows that stigma can have a negative effect on quality of health care for people living with certain chronic illnesses. For example, a 2015 systematic review of 144 studies found that stigma was one of the top five barriers to seeking treatment for people living with a mental illness.
It helps to have people check in.
Checking in on your friends is good practice in general, but it’s especially important to reach out to those who have invisible chronic illnesses.
“I cry pretty easily when I feel frustrated with [my invisible illness] and it’s embarrassing, even though I know it shouldn’t be,” said Brinley Froelich, a 31-year-old writer in Utah. “I appreciate it when people ask how they can help accommodate me.”
Whether you offer a safe space for venting, whip up a home-cooked meal or help run errands, being mindful of how you can better support loved ones with invisible illnesses can make all the difference.
Unsolicited advice is unhelpful and just plain rude.
Most people with invisible illnesses learn how to manage their conditions over time — usually with the help of specialists, medications and a support network. Receiving unsolicited advice about how to treat an illness — especially from strangers or people who don’t live with the same health condition — can feel infantilising.
“I have stage 3 kidney disease, which — aside from high blood pressure — is asymptomatic,” said Matt, a 40-year-old biologist who wished to withhold his last name in order to freely talk about his health condition.
“If I’m ordering food at a restaurant or eating something indulgent, I’m super aware of it,” he said. “I’ve probably planned for it by reducing sodium or animal protein elsewhere in my day and week. The last thing I need is someone looking at my plate and saying, ‘Isn’t that bad for you?’ Please let me manage my illness myself without policing me on what I’m eating.”
Rather than suggesting a certain diet or wellness routine when someone discloses their disability or health status to you, consider simply asking how you can best support them.
Invisible illnesses can be unpredictable.
People with invisible illnesses typically learn to avoid certain environmental triggers that make their health conditions worse. However, flare-ups and episodes are oftentimes unpredictable. This can make everyday activities — like scheduling plans ahead of time, cleaning or grocery shopping — pretty arduous.
“Even on the days that I’m feeling OK, I always have to consider that a flare could start next month, next week or this afternoon. I don’t know what my abilities will look like from day to day, and that affects me even when I’m feeling good and my pain is low,” said Jo Hjelle, 26, a student advising coordinator. “My only option is to be grateful for my good days, to not blame myself too much for my bad days and to accept the uncertainty of it all.”
People with invisible illnesses can lead fulfilling lives.
While living with an invisible illness presents its own set of unique challenges, having a healthy support system, trustworthy physicians and treatment plans in place can make these health conditions more manageable, said Madelyne Ortiz, a 38-year-old digital strategist.
“Having a career, family and the milestones people generally set out is possible,” Ortiz said. “You are able to live a life worth living.”
CORRECTION: A previous version of this article incorrectly stated Caitie Gutierrez’s age. She is 29, not 30.