Making the Invisible Visible: Navigating Life with Unseen Illnesses

Let me set the scene: a Sunday brunch, laughter echoing, everyone sharing stories of wild Saturday nights. Someone asks, ‘Why so quiet?’ I manage a sad smile, having waited for the dreaded question where I have nothing to add, THIS is my activity for the weekend. Here’s the thing: there’s a world beyond what you can see.

Living with an invisible illness means always racing against a tide no one realises is there. It’s more than just feeling tired or sore – it’s an unseen marathon, every day. So why don’t more people get it? Maybe because when illness hides, it’s too easy for others to overlook it. Today, let’s pull back the curtain – for ourselves, for our support crew, and for every zebra-striped social tile out there.

Invisible Isn’t Imaginary: What Makes an Illness ‘Invisible’?

When we talk about invisible illness, we’re not just describing rare or mysterious conditions. Invisible illnesses are health conditions that significantly impact daily life, but don’t have obvious outward signs. This means you can’t spot them at a glance - there’s no cast, no wheelchair, no visible marker. Yet, for the people living with them, the effects are very real.

 

👉 Defining Invisible Illnesses: More Than Meets the Eye

Invisible illnesses span a wide range of chronic, non-obvious conditions. Some of the most recognised include:

• Chronic Fatigue Syndrome (CFS/ME): Persistent, unexplained fatigue that isn’t relieved by rest.

• Fibromyalgia: Widespread pain, sleep problems, and cognitive difficulties.

• Ehlers-Danlos Syndrome (EDS): A group of connective tissue disorders causing joint instability, pain, fatigue, and so much more.

• Dysautonomia: Dysfunction of the autonomic nervous system, often leading to dizziness, rapid heartbeat, and fainting.

• Long COVID: Ongoing symptoms after COVID-19 infection - there are over 100 recognised long COVID symptoms.

• Mental Health Disorders: Conditions like depression, anxiety, and PTSD, which can be just as disabling as physical illnesses.

These are just a few examples. The list of invisible disabilities is long and includes autoimmune diseases, chronic migraines, and more. In fact, about 10% of the population lives with some form of invisible illness.

👉 Why ‘Looking Well’ Leads to Being Dismissed

One of the biggest challenges for people with invisible illnesses is being doubted or dismissed. Friends, family, and even healthcare professionals may say, “But you look fine!” or “You don’t seem sick.” This disconnect between appearance and reality can lead to feelings of isolation, frustration, and even guilt.

 

Invisible illnesses often fluctuate - some days, a person might manage a smile and a conversation, while other days, even getting out of bed is impossible. Because symptoms aren’t visible, people may be accused of exaggerating, being lazy, or seeking attention. This is especially true when symptoms don’t fit a clear pattern or when test results come back “normal.”

 

‘Making invisible, visible is one of our mission statements.’

👉 Overlap, Confusion, and the ‘Alphabet Soup’ of Diagnoses

Another layer of complexity is the overlap between different invisible illnesses. It’s common for someone to have more than one diagnosis - think fibromyalgia with chronic fatigue syndrome, or EDS with dysautonomia. Symptoms like pain, fatigue, and brain fog can appear in many conditions, making it hard to pinpoint what’s really going on.

 

This overlap leads to what some call the “alphabet soup” of diagnoses. People often collect a string of acronyms - CFS, ME, POTS, EDS - before they find a name/s that fits their experience. Sometimes, symptoms are missed or misdiagnosed for years. For example, someone with long COVID might be told they have anxiety, or a person with EDS might be treated for chronic pain without anyone realising the underlying cause.

 

Missed diagnoses are common, partly because invisible illnesses don’t always show up on standard tests. The variable symptom profiles, where one person’s experience looks nothing like another’s, add to the confusion. This is why invisible disabilities awareness is so important: to help people get the right support and avoid being overlooked.

 

👉 Invisible Isn’t Imaginary: The Reality of Living Unseen

Invisible illnesses are real, even when they can’t be seen. They affect every part of life, from work and relationships to self-esteem and mental health. If you or someone you love is living with an invisible illness, know that you’re not alone. The journey may be confusing and full of missed diagnoses, but every story shared helps to make the invisible, visible.

Life Behind the Curtain: The Messy Reality of Symptoms and Coping

Living with invisible illnesses like chronic fatigue syndrome, chronic pain syndromes, or hypermobility disorders means waking up each day to a body that doesn’t play by the rules. The reality behind the curtain is far messier than most people realise. A “good” day might mean juggling six to ten symptoms at once, fatigue, pain, dizziness, brain fog, nausea, and more. On a flare-up day, that number can climb to twenty or more. This isn’t just about being “tired.” It’s about learning to navigate a world where your body’s signals are unpredictable and overwhelming.

👉 Unrefreshing Sleep and the Weight of Fatigue

One of the most misunderstood symptoms is fatigue. As someone who has lived with chronic fatigue syndrome symptoms, I would often hear, “You just need a good night’s sleep.” But tired is something you can push through; fatigue is like jet lag that you can’t sleep off.

No matter how many hours spent in bed, you rarely wake up feeling refreshed. Instead, it’s as if you’re carrying extra weight with every step, and the simplest activity, like taking a shower or answering emails, can leave you completely drained for hours or even days. This is called post-exertional malaise, and it’s a hallmark of invisible illness.

 

👉 Spooning Out Your Strength: Spoon Theory and Energy Management

Energy rationing has become second nature. The Spoon Theory, a popular metaphor in chronic illness circles, helps explain this. Imagine you start each day with a limited number of “spoons”- units of energy. Every activity, no matter how small, costs a spoon or two. Once you run out, there’s nothing left.

I remember my first attempt at explaining Spoon Theory to my mum. She looked puzzled and asked, “Why don’t you just rest and get more spoons?” I had to explain that, unlike being tired, rest doesn’t always restore my energy. Sometimes, I would wake up with fewer spoons than the day before, and there was no way to know in advance how many I’d have.

• Spoon Theory and energy management are essential tools for coping with unpredictable symptoms.

• Pacing - breaking tasks into smaller steps and resting often - helps prevent crashes.

👉 Symptom Overload: The Numbers Behind the Experience

It’s common for people with invisible illnesses to experience six to ten symptoms on an average day. On flare-up days, it can be up to twenty. These aren’t just minor annoyances; they can include:

• Unrefreshing sleep

• Global or localised pain

• Brain fog and memory lapses

• Dizziness and lightheadedness

• Digestive issues

• Restless legs

• Heart palpitations

• Nausea

Sometimes, I catch my patients normalising symptoms; feeling dizzy, foggy, or in pain, and wondering, “Is this just me?” It’s easy to underestimate what’s happening, especially when you want to appear “normal” or avoid stigma. This symptom normalisation can delay diagnosis or support, making it even harder to get the help you need.

👉 Invisible Illnesses: The Challenge of Communication

Communicating these disruptions to others can feel impossible. From the outside, you might look fine - smiling, working, showing up. But inside, your body is fighting a constant battle. Many people with chronic pain syndromes or fatigue syndromes collect “alphabet diagnoses” because so many conditions overlap. It’s rare to have just one. Understanding your own symptom profile is crucial for effective fatigue management and finding the right invisible illnesses support resources.

“Tired is something we can push through. Fatigue is like jet lag you can’t sleep off.”

👉👉 Real-Life Coping: Listening to Your Body

My journey has taught me to listen closely to my symptoms. For years, I thought everything fell under chronic fatigue syndrome. Later, I learned that my dizziness and headaches were actually signs of orthostatic intolerance, and my joint pain pointed to hypermobility. Adjusting my management strategies - like using compression socks or pacing my activities - helped some symptoms settle, even if they didn’t disappear.

Invisible illnesses shape each day unpredictably. For many of us, energy management is a daily puzzle, and support resources - whether online communities, pacing guides, or symptom trackers - are lifelines. The messy reality is that symptoms are overwhelming, ever-changing, and often invisible to everyone but us.

Support, Empathy, and Advocacy: What Loved Ones (Really) Need to Know

Living with an invisible illness can be a lonely and confusing journey, not just for those directly affected, but also for their loved ones. Partners, parents, friends, carers, and even support workers often want to help but may not know where to start. Sometimes, well-meaning gestures - like dropping off a homemade banana bread - miss the mark, or advice meant to help comes across as dismissive. The reality is, support for loved ones of chronic illness patients is crucial for holistic care and emotional wellbeing, but it requires more than just good intentions. It demands empathy, education, and advocacy.

 

👉 The Most Common Challenges Surrounding Invisible Illness

Invisible illnesses like chronic fatigue syndrome (CFS/ME), fibromyalgia, Ehlers-Danlos Syndrome, and Long COVID are often misunderstood because their symptoms are not always visible. May Awareness Month shines a spotlight on these conditions, flooding social media with blue, purple, and zebra stripes to make the invisible visible.

 

This annual campaign is more than just a burst of color - it’s a vital reminder that millions of people are living with symptoms that can’t be seen but are deeply felt. Advocacy for invisible illness during May Awareness Month and beyond helps break down stigma, encourages research, and validates the lived experiences of patients and their support networks. We'll keep you posted on our May endeavours and activities.

 

👉 When Support Helps (And When It Hurts)

Support networks can make a world of difference, or sometimes add to the challenges. Friends and family may unintentionally complicate the journey by offering advice like “Have you tried yoga?” or “But you look so well!” These comments, though meant to be encouraging, can feel invalidating. It’s important to remember that a kind word, while appreciated, is not always enough.

 

Real support for loved ones means listening without judgment, asking open questions, and being willing to learn about the complexities of invisible illnesses. As one participant in our community put it, “Support for loved ones of chronic illness patients is crucial for holistic care and emotional wellbeing.”

 

 

Communication is at the heart of effective support. Honest discussions about symptoms, limitations, and needs can help bridge the gap between what is seen and what is felt. Loved ones should feel comfortable asking, “Is this normal for you?” or “How can I best support you today?” 

 

At the same time, those living with invisible illnesses should feel empowered to share their experiences without fear of disbelief or dismissal. Sharing resources, like the Missing Diagnosis Questionnaire, can help both patients and their support teams better understand the full scope of symptoms and identify patterns that might otherwise go unnoticed. 

 

These tools are especially valuable given that many invisible illnesses have overlapping symptoms, and it’s common for individuals to receive multiple diagnoses over time.

👉 Advocacy and Awareness Matter

Advocacy is another cornerstone of support. By educating themselves and others, loved ones can help counteract myths and stigma associated with invisible illnesses. This might mean sharing articles, attending awareness events, or simply speaking up when they hear misinformation.

 

May Awareness Month is a perfect opportunity to get involved, but advocacy should be ongoing. The more visible we make these conditions, the harder they are to ignore- and the more likely it is that research funding, public understanding, and healthcare resources will improve.

 

Despite growing awareness, navigating healthcare systems remains a challenge for many. There is still a lack of research and funding for conditions like CFS/ME, Fibromyalgia, Dysautonomia, Ehlers-Danlos Syndrome, and Long COVID. This can make it difficult for patients to receive timely diagnoses and effective treatment.

 

Support for loved ones includes recognising these systemic barriers and advocating alongside those affected for better care and resources. Community support groups and online forums can also be lifelines, offering validation and practical advice from others who truly understand.

 

Conclusion: The Need to Make the Invisible Visible

Supporting someone with an invisible illness is an ongoing process that goes beyond empathy. It means being willing to learn, to ask questions, and to advocate for greater understanding and resources. May Awareness Month reminds us that making the invisible visible is a collective effort - one that requires compassion, communication, and a commitment to change. By standing together, we can ensure that no one feels unseen or unheard on their journey with invisible illness.

Too Long, Didn’t Read

Invisible illnesses are real, complex, and rarely understood at a glance. Awareness, empathy, and real conversation can shift the experience for everyone involved. Let’s look for what’s hidden and support each other better.