When Your Child Lives With Invisible Chronic Illnesses

I'm a mom to two adult children with invisible and chronic illnesses. My heart breaks for them for one reason or another each and every day.

My kids are great at putting smiles on their faces and brightness in their voices. They can laugh, be sociable, and enjoy themselves, although sometimes only for short periods. When people meet them, they see those moments and assume that's how they are all the time.

They don't see what happens afterward. They don't see the struggles that are part of everyday life.

I find myself explaining things over and over again. Sometimes I probably overexplain because I want people to understand. Other times, I get angry. I'm tired of people asking why my daughter doesn't get a job or why my son still lives at home, as though those questions have simple answers.

I was a strong advocate for my children when they were young, but even I missed so much. I carry a lot of guilt and frustration over that.

As their parent, I've witnessed their struggles and I know their history well. I'm often the second set of ears and eyes at medical appointments and when dealing with insurance. When they were younger, it could be difficult to get the information I needed from them. Now that they're adults, I have to find a balance between supporting them with the things they can't manage on their own and respecting their voices, their choices, and their experiences.

It can be a difficult place to be.

I'm writing this from a mother's perspective, and I want to be clear that I'm not comparing my experiences with theirs. I'm not the one living in their bodies or facing the challenges they face every day.

I think I felt compelled to write this because of how often I encounter scrutiny or pushback, and I know how much harder it is for them.

When someone has spent a lifetime learning how to look fine, it's easy for other people to believe what they see. I wish more people understood that a smile, a conversation, or a good hour doesn't tell you what the rest of someone's day looks like.

From the Practice: Understanding Invisible Chronic Illnesses

October 18–24, 2026, is Invisible Disabilities Week, an opportunity to raise awareness about conditions that may significantly affect someone's daily life without being apparent to others.

Many rheumatologic conditions, including rheumatoid arthritis, lupus, and psoriatic arthritis, can cause pain, fatigue, stiffness, and other symptoms that aren't always visible during a conversation or medical appointment. Symptoms may also fluctuate, meaning that what someone can manage one day may be very different from what they can manage the next.

For some patients, the challenge is further complicated by masking.

Masking can mean different things in different circumstances. Autistic masking, sometimes called camouflaging, involves adapting or concealing autistic characteristics to meet social expectations. People living with chronic illnesses may also conceal symptoms, minimize discomfort, or push themselves to appear well. These experiences are not identical, but both can create a disconnect between outward appearance and internal experience.

Research on autistic camouflaging has documented its potential emotional and physical toll, including fatigue and anxiety. It also highlights why healthcare professionals should consider patients' descriptions of their experiences rather than relying exclusively on how they appear during an interaction.

In rheumatology, understanding a patient's condition requires more than observing how someone looks or moves during a single appointment. Conversations about daily functioning, fatigue, pain, symptom patterns, and the impact of illness on work, relationships, and ordinary activities are important parts of care.

Patients may find it helpful to describe not only what they can do, but also how much effort an activity requires and whether they need additional rest or recovery afterward. Keeping notes between appointments can help communicate symptoms that may not be apparent during an office visit.

Family members and caregivers can also provide valuable observations when patients want them involved. Their perspective may help explain changes in functioning or challenges that are difficult to capture during a brief appointment. At the same time, the patient's own voice, preferences, and autonomy must remain central to the conversation.

Living with an invisible illness should not mean having to constantly prove that symptoms are real.

During Invisible Disabilities Week, we encourage everyone to remember that a person's appearance offers only a small glimpse into their health. Listening without assumptions, asking thoughtful questions, and recognizing that disability doesn't always look the way we expect can make a meaningful difference.