What You Can't See: Understanding Invisible Disability

This week, October 18th to 24th, marks Invisible Disabilities Awareness Week.

When we think of disability, we often imagine wheelchairs, casts or another visible cue. But not every disease comes with a visible sign; there may not be an obvious sign telling the world that someone is fighting hard to get through the day. Pulmonary Hypertension (PH) is a prime example. On the surface, a person living with PH may look completely healthy, but inside, their heart and lungs are fighting an intense battle. This week focuses on the reality of invisible disabilities and the disconnect between how someone looks and how they may actually feel.

For those living with PH, strangers may not make assumptions or treat them differently when they walk down the street. But that invisibility can also make it difficult for family, friends, and coworkers to understand why a person who "looks fine" needs to rest after climbing a flight of stairs or cancels plans because breathing can feel like running a marathon. That disconnect can be isolating and frustrating.

A recent international survey of more than 3,300 adults with PH across 88 countries found that the "invisible" nature of the disease can have a significant impact on people living with PH. The absence of visible symptoms often led others to doubt or minimize their limitations, straining relationships and making it harder to access various accommodations. For many, this struggle didn’t feel like a side effect of living with PH; it felt like the most defining part of it.

This is exactly why raising awareness matters. Someone may look fine and still be dealing with limitations that aren't apparent to those around them. A little more understanding can make everyday situations easier, whether that means giving someone time to rest, being flexible when plans change, or simply believing them when they say they’re struggling. Sometimes, being supportive starts with recognizing that not everything someone is dealing with can be seen.