The Invisible Burden: When Your Chronic Illness Goes Unseen

You don’t need me to tell you that living with a chronic illness is difficult enough on its own. The pain, fatigue, and unpredictable symptoms create daily challenges that most people never have to face. But there's another layer of suffering that often goes unacknowledged, and that’s the profound emotional toll of having your experience dismissed, minimised, or completely unseen by those around you. And so I wanted to dig a little deeper on this..

The Daily Struggle of Invisibility

When you have a chronic illness, being unseen becomes part of your daily struggle. It shows up in things like your partner saying "but the dishes need doing" when you can barely make it to the loo, your manager saying "everyone's stressed" when you're fighting to stay conscious at your desk or your friends saying "I'm tired too" when you haven't had the energy to shower in three days.

These moments are both sometimes infuriating and frustrating, but also they hurt. They hurt because they create such a profound sense of isolation that compounds the physical suffering you're already experiencing. It’s like being dealt an extra blow on top of everything else you’re dealing with.

The Unique Pain of Medical Gaslighting

For many of my clients, the journey with chronic illness began with years of medical gaslighting. Being told their symptoms were "all in their head" or that they were "just anxious" or "just depressed." Some were told they were exaggerating or attention-seeking. Others were dismissed because their test results came back "normal," so therefore they MUST be lying.

This systematic invalidation doesn't just delay diagnosis and treatment, it changes the whole foundation of your relationship with yourself. You begin to doubt your own reality. You question whether you're really experiencing what you're experiencing. You wonder if maybe you are just weak or lazy or making it all up. Thoughts like “what if I actually am just mad?” creep in.

There’s a term for this known as "epistemic injustice" and this is when your knowledge of your own body and experience is dismissed because you lack the cultural authority to make your claims believable. It's a fancy term for something that feels like having the ground ripped out from under you, and it’s not something you can understand unless you’ve been there yourself. I myself had a family member not really believe I was in pain like I described, and it wasn’t until they physically saw my MRI results that they went “oh, that must be sore”. EH, YEAH!!

Living in Two Worlds

When you have a chronic illness, you often find yourself living in two distinct realities. There's the reality you experience, the one where getting out of bed feels like climbing Everest, where brain fog makes simple tasks feel impossible, where pain is your constant companion. Then there's the reality others perceive, the one where you look "fine," where your limitations seem like choices, where your cancellations seem like flakiness rather than necessity.

Bridging these two worlds requires constant energy you don't have. It means educating people who often don't want to be educated. It means advocating for yourself when you barely have the energy to speak. It means fighting to be seen when all you want to do is rest. It’s exhausting, and unfair.

The Burden of Being Unseen

The emotional toll of having your illness go unseen shows up in various ways:

Isolation and loneliness. When others can't or won't understand your experience, meaningful connection becomes difficult. Many of my clients describe feeling profoundly alone even when surrounded by people who love them.

Internalised ableism. When society constantly implies that your worth is tied to your productivity, you begin to believe it. You push yourself beyond your limits, causing more harm, because you've internalised the message that rest is laziness.

Identity crisis. Chronic illness often forces you to redefine who you are and what matters. This is hard enough without also having to defend your experience to others who question whether you're really ill.

Relationship strain. When partners, family members, or friends don't acknowledge the reality of your illness, resentment builds. Trust erodes. The relationship suffers.

Delayed treatment and care. When medical professionals dismiss your symptoms, diagnosis and treatment are delayed, often for years. This costs you physically, emotionally, and financially – especially while navigating the NHS waiting lists.

Finding Your Way Through

So how do you navigate this challenging landscape? Here are some thoughts based on my work with clients who face these struggles:

Find your people. Connect with others who understand because they're living it too. Online communities can be lifelines when you're too ill to leave home.

Practice radical self-compassion. When the world is telling you your experience isn't real or valid, you need to become your own fiercest advocate. This means treating yourself with the kindness and understanding you'd give to your best friend.

Set boundaries where possible. You don't owe everyone an explanation. You don't have to justify your limitations. "No" is a complete sentence.

Seek professional support. A therapist who understands chronic illness can provide the validation and tools you need to navigate these challenges. Therapy can be the one place where your experience is never questioned.

Document your symptoms. Keeping a symptom journal can help you advocate for yourself with GPs and consultants, and can validate your own experience when others question it.

Remember that your worth isn't tied to productivity. You are valuable simply because you exist, not because of what you can produce or contribute.

You Are Not Alone

If reading this resonates with you, know that you're not alone. The experience of being unseen with chronic illness is tragically common, but it doesn't have to define your journey. Your illness is real and your experience matters. And you deserve spaces where that is never, ever questioned. Being chronically ill in an ableist society is hard enough without also having to convince people your illness exists. It’s shit and it's not fair. But please know there are people who get it, who believe you without question, and who see your struggle even when it's invisible to others.

You shouldn't have to fight to be seen, but until the world catches up, know that in this space, with me, you are always seen, always heard, and always believed and I’m here as always, if you want to reach out for some support.

Kirsty x