Invisible Illnesses: Maltese Nurses Share ME & Fibromyalgia Journeys

This month, dedicated to raising awareness for often misunderstood conditions, two courageous Maltese nurses are stepping forward. They live with the debilitating illnesses Myalgic Encephalomyelitis (ME) and Fibromyalgia. ME is commonly, but incorrectly, known as Chronic Fatigue Syndrome (CFS).

 

These nurses are sharing their profound daily struggles. Their aim is to shed light on the immense challenges faced by individuals battling these “invisible illnesses.” One nurse bravely continues her work despite the persistent pain and exhaustion.

 

The other has made the difficult decision to prioritize her health, stepping back from her demanding profession. Both are united in a powerful mission: to amplify voices, foster greater public understanding, and advocate for essential support for those affected.

 

Understanding ME and Fibromyalgia: Beyond Just Tiredness

These chronic conditions present unique and often misunderstood symptoms that severely impact quality of life.

 

Myalgic Encephalomyelitis (ME): A Profound Systemic Illness

ME is a severe, chronic, and complex neuroimmune disease. It is characterized by systemic inflammation, particularly affecting the brain and spinal cord. This condition profoundly limits patients’ ability to engage in their usual daily activities. They face extreme difficulties with both physical and mental exertion. ME frequently develops after an infection, often triggered by viruses.

 

A staggering 75% of individuals affected by ME find themselves unable to work. Furthermore, 25% of those who are home-bound become completely bedridden.

 

The hallmark symptom, unique to ME among all chronic conditions worldwide, is Post-Exertional Malaise (PEM). PEM involves a severe worsening of symptoms after even minor physical, mental, or emotional exertion. This crash can occur 12 to 72 hours post-activity and can last for hours, days, or even months, depending on the severity of the exertion and the individual’s condition.

 

Even patients with mild ME experience a functional decline of at least 50% in their activity levels compared to their pre-illness state. This makes ME far more than just “tiredness.”

 

Fibromyalgia: Widespread Pain and Beyond

Fibromyalgia is another chronic condition defined by its pervasive nature. Its primary characteristic is widespread pain and tenderness throughout the body.

 

This pain is often deep, aching, burning, or throbbing. It is frequently accompanied by an array of other debilitating symptoms. These include profound fatigue, persistent sleep disturbances (even if sleep duration is sufficient, the quality is poor), and significant cognitive difficulties, often referred to as “fibro fog.” Patients may also experience heightened sensitivity to touch, temperature, lights, and sounds.

 

A United Voice: The ME, CFS & Fibromyalgia Alliance Malta

In Malta, patient advocacy is vital. The ME, CFS & Fibromyalgia Alliance Malta serves as a crucial support and advocacy network.

 

Amplifying Patient Experiences

Both Maria Gauci and Louise Cachia are active members of the ME, CFS & Fibromyalgia Alliance Malta. This non-governmental organization (NGO) is dedicated to advocating for improved understanding, enhanced support systems, and better healthcare access for everyone affected by these challenging conditions.

 

Through the alliance’s tireless efforts, they are amplifying the voices of hundreds of individuals across Malta. These people live daily with these deeply misunderstood illnesses. The alliance highlights an urgent and pressing need for official recognition of these conditions, the development of accessible and specialized care pathways, and greater compassion from the public and healthcare professionals alike.

 

“Not Just Tiredness”: The Core Message

Maria and Louise powerfully articulate a central message: “It is not just tiredness.” They emphasize that living with ME or Fibromyalgia is “a constant struggle against a body that does not recover.” This struggle goes beyond simple fatigue; it is a fundamental breakdown in the body’s ability to regenerate energy and function normally, leading to profound and persistent debility.

 

The Diagnostic Labyrinth: A Long and Frustrating Journey

One of the most significant challenges for individuals with ME, CFS, and Fibromyalgia is the arduous and often disheartening diagnostic process.

 

Diagnosis by Exclusion: A Test of Endurance

There is currently no single definitive test or biomarker to confirm the presence of ME, CFS, or Fibromyalgia. Instead, diagnosis is typically achieved through a process of exclusion. This means that doctors must systematically rule out a wide range of other possible illnesses that present with similar symptoms.

 

These can include complex autoimmune disorders, various thyroid issues, neurological conditions, infectious diseases, and other chronic illnesses. This exhaustive process often involves numerous specialist consultations, extensive laboratory tests, and imaging scans.

 

Years in Limbo: The Toll on Patients

This exclusionary diagnostic journey can span many months, or even years, leaving patients in a distressing state of limbo. During this prolonged period, individuals continue to suffer from unrelenting chronic pain, extreme and debilitating fatigue, persistent cognitive difficulties (such as memory problems or brain fog), and a myriad of other life-altering symptoms.

 

The lack of a clear diagnosis often leads to feelings of isolation, frustration, and a profound sense of invalidation, as they search for answers while their health continues to decline.

 

Maria Gauci’s Journey: “Trapped in a Body That Forgot How to Recharge”

Maria Gauci, a dedicated nurse, shares her personal battle with ME and Fibromyalgia, offering a poignant insight into living with these conditions.

 

The Onset of Overwhelming Fatigue

Maria’s symptoms began approximately 10 years ago. A difficult life episode seemed to trigger the onset of an overwhelming and relentless fatigue. Prior to this, she had always considered herself a high-energy individual, capable of bouncing back quickly from tiredness. However, this new fatigue was different; it did not dissipate. Instead, it grew progressively worse, eventually spiraling into periods of severe depression, compounding her physical struggles.

 

Misunderstood Advice and Persistent Struggles

Seeking help, Maria underwent numerous medical tests. Despite her profound exhaustion, her blood tests consistently “came back normal.” The standard medical advice she received was to “go out, go for walks, and exercise.” However, Maria quickly realized this was impossible. She could barely lift her head from her pillow. As a nurse herself, Maria understood the medical training behind this advice and didn’t blame her doctors. Yet, she found herself trapped.

 

She attempted short, slow walks, but these minimal exertions would inevitably lead to a complete collapse back into bed afterward. With two young children and a reduced-hours nursing job, life rapidly became unmanageable. “Unless I had help from my husband or my aunt, things were inexistent for me,” Maria recounts, describing her life as “living in a black bubble.” She also struggled significantly with processing conversations and formulating responses, indicating the pervasive cognitive impact.

 

The Long Road to Diagnosis: “Knowledge is Empowerment”

When moments of “brain fog” lifted, Maria began her own extensive research. “Knowledge is empowerment. My coping skill was to search and try to find out what was happening,” she explains. Eventually, her research led her to ME and Fibromyalgia as potential diagnoses. She then discussed these possibilities with her doctors.

 

Maria noted, “As a nurse, I was never taught about ME or Fibromyalgia. They simply weren’t in my vocabulary,” highlighting the historical lack of medical education on these conditions.

 

Two years later, after meticulously ruling out other conditions, Maria received her Fibromyalgia diagnosis. Her ME diagnosis, however, took considerably longer. “With ME, there are various stages: mild, moderate, severe. I was on the mild to moderate side, so doctors had to dig deeper,” Maria explains, illustrating the complexity of diagnosing ME, especially in less severe cases.

 

Working While Draining: The Physical Toll

Even with her health declining, Maria continued to work as a nurse, often taking extended sick leave to attempt recovery. “I used to hide my symptoms, but patients would still ask if I was okay. I took that as a sign,” she recalls, recognizing the visible impact of her invisible illness. She worked in a busy department, characterized by constant stimulation and high demands.

 

This environment was profoundly overwhelming for her. “I would work six hours, then go home and crash. I was running on empty. My body wasn’t recharging,” Maria poignantly describes. She once saw herself as a “jacuzzi—bubbly and full of energy,” but that had completely changed.

 

Guilt and the Post-Exertional Crash

The impact extended beyond her professional life. “My son was four. He used to ask when I would get out of bed to play or read to him. I felt guilty not being the mother, wife or worker I wanted to be,” Maria shares, expressing the emotional burden. Her sick leaves would last three weeks: the first entirely bedridden, the second with minimal movement, and the third for light tasks. Yet, returning to work would trigger immediate, overwhelming fatigue.

 

Maria details the hallmark ME symptom: Post-Exertional Malaise (PEM). She explains that PEM can strike anywhere from 12 to 72 hours after any physical, mental, or emotional effort. It can last for hours or even months, depending on the severity of the exertion. “The body cannot recover after physical, mental or emotional effort,” Maria explains.

 

“If you keep pushing through, it leads to a crash.” A crash, she says, is when the body completely shuts down, both physically and mentally. “It is like hibernation. I experienced a crash after the holidays, even though we did nothing extraordinary,” she recounts. Early warning signs, such as neck pain, light and sound sensitivity, and shivering, would precede these crashes. In these moments, “The body has just enough energy to breathe. I had to give in and just rest,” Maria vividly describes.

 

The Difficult Decision: Leaving a Beloved Profession

Despite attempting to mitigate her symptoms by switching departments and reducing her working hours, continuing to work became “unbearable.” Maria described it as feeling like “dragging a heavy object up a hill with chains tied to her limbs.” The constant crashes and immense effort ultimately forced a heartbreaking decision. “I was crashing all the time. It was a hard decision to stop working, as I love my job and my colleagues,” Maria shares, highlighting the profound personal sacrifice.

 

Confined Life and Daily Management

These days, Maria is largely confined to her home. She manages some light household chores. Occasionally, she ventures out for coffee with her husband on weekends. However, this constitutes the full extent of her external activities. “I go out only for appointments or necessities,” Maria states.

 

She estimates having only four to five hours of usable energy daily. Every task requires careful pacing, and she must rest between even minor activities. “There were times I couldn’t even cook pasta with ready-made sauce. My husband fills in the blanks,” she says, emphasizing her dependence on her partner. Maria succinctly summarizes her constant struggle: “It’s like walking a tightrope. I’m trapped in a body that forgot how to recharge.”

 

Misdiagnosis and the Importance of Early Intervention

Maria underscores that ME and Fibromyalgia are frequently misdiagnosed or dismissed in their early stages. Often, initial symptoms are attributed to anxiety or depression. “People tell you to ‘snap out of it’,” she laments. “Would you say that to someone with the flu? With ME, delayed diagnosis means delayed care.” She warns that even mild ME can worsen significantly if patients are incorrectly advised to push their physical limits.

 

While ME, Fibromyalgia, and Chronic Fatigue Syndrome are often used interchangeably by the public, Maria clarifies that they are distinct conditions. “Fibromyalgia mostly causes full-body aching and overstimulation, even from bad weather. With ME, the issue is at the cellular level, the body cannot recover properly. In fibromyalgia, pain is amplified in the brain,” she explains, differentiating the underlying mechanisms.

 

Finding Support and Advocating for Change

Feeling isolated early in her journey, Maria eventually discovered the ME, CFS & Fibromyalgia Alliance Malta. Despite profound fatigue, she “dragged herself” to a meeting about Fibromyalgia and ME. “From that day on, I wasn’t alone. I felt understood, and that I could understand others,” Maria recounts, highlighting the immense relief of connecting with others who shared similar experiences.

 

She subsequently became an active member of the NGO, even serving on its board to tirelessly advocate for more patient support and recognition. “I had to resign twice due to my health, but I still support members however I can,” Maria says, demonstrating her unwavering commitment.

 

Receiving a formal diagnosis was profoundly validating for Maria. It not only affirmed her experiences but also helped her refine her treatment approach and become a stronger advocate for her own needs. There is currently no cure for ME or Fibromyalgia; therefore, treatment focuses entirely on managing symptoms.

 

“You try to address what is making you feel the worst,” she explains. This includes specialized pain treatments that work beyond regular painkillers by blocking pain signals to the brain. Sleep disturbances are also a major issue, requiring doctors to find the right medication to aid restful sleep. Maria also cautions that other health issues should not be ignored, and new symptoms must always be checked, as co-morbidities can frequently arise.

 

She also highlights a critical gap in the current healthcare system: the lack of long-term follow-up. “We’re often discharged after a few visits,” Maria points out. “They might offer physiotherapy, but these are chronic illnesses; we need ongoing regular monitoring to avoid complications.” This emphasizes the need for a more holistic and continuous care model.

 

Louise Cachia’s Story: Grieving a Lost Life While Living with ME and Fibromyalgia

Louise Cachia, another Maltese nurse, candidly shares her experience, revealing the emotional and physical toll of ME and Fibromyalgia.

 

The Onset and Double Diagnosis

Around seven years ago, Louise began experiencing an overwhelming and persistent fatigue, similar to Maria. Working alongside two doctors, she confided in them about her symptoms. It was these colleagues who first suspected she might have ME, then commonly referred to as Chronic Fatigue Syndrome. Following a series of thorough tests, Louise received a dual diagnosis: both ME and Fibromyalgia.

 

“I knew how to manage the pain,” Louise recalls, referencing her nursing background, “but this type of fatigue was too much.” She emphasizes, “Chronic fatigue syndrome is something that stays in your life forever. There is no treatment, and it turned my world upside down.”

 

Lost Hobbies and Professional Challenges

Louise was once a strong, active person whose passion was diving. This beloved hobby required significant physical stamina. “To dive, you need a lot of strength,” she explains. Tragically, due to her deteriorating health, “I don’t dive anymore, and every year my condition gets worse.” Even her nursing job, which she deeply values, has become increasingly difficult. She frequently has to take unpaid sick leave, a decision that carries both personal and financial strain.

 

“Some people end up unable to work, and that can push them to the poverty line,” Louise notes, highlighting the severe economic impact of these conditions. “There are days I have to carefully manage how I split my expenses,” she shares, painting a stark picture of her daily financial worries.

 

Physical, Mental, and Social Isolation

Louise describes how her condition has affected every aspect of her life: physically, mentally, and socially. Her lowered immunity makes her more susceptible to other illnesses, a particularly dangerous vulnerability for a nurse. Some days, her fatigue is so profound that she “cannot even cross the road to the supermarket,” relying instead on online grocery deliveries.

 

“You often pity yourself when you see what you have become,” she confesses, revealing the emotional pain of losing her former self. “While I bounce back, there is grief for the life I’ve lost. ME is literally keeping me out of life,” Louise articulates, capturing the essence of her profound loss.

 

Her healthcare background has, paradoxically, offered a degree of understanding. It has helped her better comprehend her own illness and has instilled in her a profound sense of compassion for her patients. Louise describes ME as a “hidden disability,” incredibly difficult for healthy individuals to truly grasp.

 

“It is so complex that even people around me did not understand at first. When they started seeing I was not myself or as productive, then they started to get it,” she explains, highlighting the gradual realization by others.

 

Fighting for Workplace Accommodations and Advocacy

Louise underwent a medical board review. This process led to a crucial workplace concession: she was granted permission to begin her nursing shifts later, at 10 AM. “I was happy they lent a hand so I can continue the job I love,” she states, expressing gratitude for the accommodation. However, she adds, “But it was a long journey for them to understand,” underscoring the persistent challenges in obtaining necessary support.

 

Her determination and “hard-headedness” are what have sustained her. Louise further demonstrates her resilience by enrolling in an online Master’s program, driven by an inherent need to continue contributing and “giving back.” Advocacy has always been important to her. This drive led her to join the NGO, specifically to raise greater awareness about ME, a condition she feels remains particularly “hidden” compared to Fibromyalgia, which she believes is “talked about to some extent.”

 

Living Day by Day: No Cure, Just Management

Louise echoes Maria’s sentiment that people with ME are often unfairly labeled “lazy.” She passionately refutes this, emphasizing, “the condition is debilitating. If there were a cure, I would be the first to know about it. But there isn’t, it’s about living day by day.”

 

She explains that treatment approaches vary based on the severity of the condition, and patients often experiment with different vitamins or supplements in a desperate search for even a little more energy. “It is not one-size-fits-all. Medication is expensive and many cannot afford it,” Louise highlights, pointing to significant financial barriers to managing the illness.

 

Though her condition is currently moderate, Louise admits a deep fear that it may worsen. “There may come a time where I will have to reduce my hours or even leave my job. That is something I am afraid of. Being a nurse is what identifies me,” she confesses, revealing the profound emotional impact of potentially losing her professional identity.

 

A Life of Constant Planning and Support

When her body signals a crash, Louise has learned to listen. “I sleep a lot,” she says, “but I only recharge enough to get the basics done. Everything is planned, even how much I need to sleep just to keep working.” She now must meticulously plan her energy expenditure, resting after every single task, describing it as a “vicious cycle.” “Even daily things take me a week to complete,” Louise reveals, illustrating the extreme effort required for seemingly simple activities.

 

She has regretfully given up most of her beloved hobbies, though she still tries to swim in summer when her body allows, finding it somewhat helpful. Socially, canceled plans and last-minute no-shows have become her norm, which she acknowledges leads to increased isolation. Thankfully, Louise cherishes a strong support system.

 

Her parents understand her challenges and never pressure her. “However, not everyone has that. Some people are completely alone,” Louise sadly notes, highlighting the profound isolation many individuals with these invisible illnesses face.