Living with an Invisible Chronic Illness: It’s Not Just Being a Bit Tired…

“You look well! You must be better now.”
“We all get tired - you just need a good night’s sleep”

If you live with Long Covid or another invisible chronic illness, you’ve probably heard these phrases more times than you can count. They’re often said with good intention, but they miss the truth of what’s really going on inside a body that looks fine on the outside.

It’s not just being a bit tired. It’s living with a nervous system that’s working overtime to keep you upright, with energy that runs out far quicker than we would like, and with symptoms that flare when life gets loud, busy, uncertain or unpredictable. When we are expected to be ‘okay’ because we look okay on the outside, this misses a big part of the lived experience of a person attempting to regain their health and wellbeing. 

The Hidden Cost of Everyday Life: When the Automatic becomes Erratic!

For most people, everyday activities are simple. Chatting to a friend over coffee, driving across town, popping into the supermarket after work, or sitting through a family gathering. For someone with Long Covid or another post-viral condition, these same activities can feel like climbing a mountain.

Why? Because behind the scenes, the body is already devoting a huge amount of energy to healing, recovery and staying in balance. The autonomic nervous system, the intelligent system that controls heart rate, blood pressure, digestion, may have become less efficient since illness. This is known as the dysautonomic effects of post-viral illness and it means that tasks that used to be automatic now drain your energy battery alarmingly quickly.

Noise, bright lights, conversations, travel: all of these pour demand onto a system already running on empty. Even things others see as ‘relaxing’ or activities we once enjoyed with ease, can leave you feeling wired, fatigued, or foggy for hours or days afterwards. It’s not that you don’t want to join in, it’s that there’s a hidden cost others can’t see.

Masking: The Invisible Effort

On top of the physical load, there’s another hidden layer: masking. Many people with invisible illnesses push themselves to appear “fine.” They smile, they chat, they try to keep up, all while carefully concealing pain, exhaustion and a nervous system that pushes them into the fight/flight survival state much more readily than before. 

Masking often comes from not wanting to worry others, or from fear of being a burden, misunderstood or judged. But this effort takes an enormous toll. The nervous system is already scanning for safety and juggling symptoms; and pretending to be okay adds yet another drain on an already overdrawn energy account. It’s why someone may seem chatty and well and then have to spend the next two days recovering.

Advocating and Educating

When we live with a condition that is often misunderstood and invisible too, we often find ourselves with the constant need to advocate for ourselves. It’s not just about managing symptoms; it’s also about repeatedly explaining and justifying your condition to those who can’t see it. The pressure to educate others: friends, family, employers, even medical professionals, can be exhausting, especially when you’re already running on limited energy. Having to “prove” your illness or translate your experience into something others can understand adds another layer of stress, when what you really need is understanding and support without question. We would not question why a person with a broken leg needs crutches, and yet when it comes to invisible illness, we may find ourselves judged or disbelieved simply because the impact of the condition is often felt experience rather than physically visible. Regardless support is necessary and the need for it should not be questioned. 

The Crash That Comes Later

One of the most misunderstood aspects of invisible illness is the delayed impact. You might feel just about okay at the time, but symptoms often worsen hours or even days later, a phenomenon known as post-exertional malaise. What others see as “just a fun afternoon out” can trigger brain fog, pain, heart palpitations or a total energy crash that lingers long after the fun is over.

This isn’t about weakness or poor stamina; it’s a nervous system and an immune system still on high alert. Your body is doing its best to protect you, but its capacity is reduced. For healing and recovery to take place we need to manage our energy output and the input from activity, stimulation even conversation around us.

Wanting to Belong, Not Be Different

People with invisible disabilities often walk a tightrope: wanting to participate in life, to belong - and not feel different - but also needing their reality to be understood. They don’t want pity or special treatment; they want awareness, kindness and flexibility.

It helps when others understand that:

• Missing out isn’t a choice; it’s about survival.
• Planning and pacing are vital: resting before you look tired is what helps prevent crashes.
• Masking illness and meeting other’s expectations is in itself a huge drain on energy.

Small Acts of Understanding Make a Big Difference

You can’t see a depleted nervous system, inflamed blood vessels or a brain fighting fog. But you can listen without judgement, believe people when they talk about their symptoms, and make space for their needs without guilt-tripping, judging or comparing.

Sometimes the most supportive thing you can say is:
“I believe you. What would make this easier for you today?”

There Is Hope

None of this means life stops forever. Many people with invisible illnesses do improve over time, especially when they learn pacing strategies and get support for their nervous system. But it does mean life has to be lived differently for now. And understanding from friends, family and colleagues makes that journey far less lonely.

Living with an invisible illness is not just being a bit tired. It’s navigating a world that wasn’t built with your limits in mind, while still wanting to laugh, connect and belong like everyone else. With compassion and awareness, we can make that world a little kinder, and that helps everyone.