"I started having symptoms as a child – I got sick all the time. I now suspect that it was actually my M.E./CFS, after I had glandular fever as a child."
Living with a complex array of chronic health conditions is a daily reality for millions worldwide, including our latest A Note of Hope inspiring interviewee, who has chosen to remain anonymous throughout this article. However, while their name remains private, their journey is no less powerful or important, offering a raw and inspiring glimpse into what it's like to live with multiple chronic illnesses.
For our interviewee, their health challenges began early in life.
“I started having symptoms as a child – I got sick all the time," they recall, reflecting on a childhood marked by frequent illnesses that seemed to have no apparent cause.
Looking back now, they suspect these early symptoms were linked to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex and debilitating chronic illness that affects multiple systems in the body, leaving those who suffer from it facing a life of fatigue, pain, and a host of other symptoms that can be both unpredictable and severe. Despite its name, ME/CFS is far more than just "Chronic Fatigue". It is a systemic condition that impacts a person's energy levels, immune system, nervous system, and often the ability to carry out even basic daily activities.
One of the most recognised symptoms of ME/CFS is post-exertional malaise (PEM), a condition where even minimal physical or emotional effort can trigger a severe onset of symptoms, often for days, weeks, or even longer. People with ME/CFS usually describe this as feeling like they've "crashed" with profound exhaustion that rest does not alleviate. Unlike typical fatigue, the exhaustion in ME/CFS can be so overwhelming that it becomes difficult to even sit up, talk, or perform essential self-care, like brushing your hair or teeth.
Other common symptoms include joint and muscle pain, sleep disturbances, cognitive dysfunction (sometimes referred to as "brain fog"), dizziness, headaches, and sensitivity to light and noise. Many people with ME/CFS also struggle with digestive issues, chronic infections, and frequent sore throats or swollen lymph nodes.
While the exact cause of ME/CFS is still not fully understood, it is often triggered by viral infections, like glandular fever (Epstein-Barr virus), which our interviewee recalls experiencing as a child.
They said, "I had glandular fever as a child, and that's often linked to ME/CFS", noting the connection between early viral infections and the onset of chronic M.E. symptoms later in life. At the time, however, it was just another mysterious illness that they had to recover from without realising it could be a precursor to more chronic issues.
While research suggests that ME/CFS may involve a combination of immune dysfunction, hormonal imbalances, and abnormal nervous system responses, no single cause has been identified. What is clear, however, is that ME/CFS drastically impacts the quality of life for most of those who live with it.
"When I was a teen, I started to have a lot of pain in my joints to the point where I wasn't even able to write anymore and needed accommodation at school."
For our brave interviewee, their health problems gradually worsened throughout their teenage years, as they started experiencing intense joint pain, which affected their ability to write and even required accommodations at school. After researching their symptoms, they suspected they might have Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS), as well as ME/CFS.
Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) are complex conditions that often go hand-in-hand, making life incredibly challenging for those who live with them.
Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders that primarily affect the skin, joints, and blood vessels. The most common form is hypermobile EDS (hEDS), though there are thirteen subtypes, each with its own specific characteristics.
EDS is caused by mutations that affect the body's collagen, a protein that gives structure and elasticity to skin, tendons, ligaments, and other tissues. For EDS patients, joint hypermobility is often one of the first noticeable signs. Joints can easily stretch beyond their normal range, which can lead to frequent dislocations, subluxations (partial dislocations), and chronic pain, which aligns with the joint pain experienced by our interviewee, which affected her ability to write.
EDS can also affect other parts of the body, leading to complications such as fragile skin that easily bruises or tears, poor wound healing, and even problems with internal organs. Some individuals with EDS also experience digestive issues, bladder dysfunction, and cardiovascular problems. The condition is often called an "invisible illness" because many of its symptoms, particularly the internal pain and fatigue, are not apparent to others.
Furthermore, Postural Orthostatic Tachycardia Syndrome (POTS) is a condition that affects the autonomic nervous system, which controls many of the body's automatic functions, such as heart rate, blood pressure, and digestion. In POTS, there is an abnormal increase in heart rate when moving from lying down to standing, which can lead to a variety of debilitating symptoms, including dizziness, fainting, lightheadedness, and fatigue.
The condition is often described as a form of dysautonomia—a disorder in which the autonomic nervous system malfunctions. POTS can make simple activities like standing up, walking, or even sitting for extended periods extremely difficult.
POTS is often seen in combination with other chronic illnesses, especially connective tissue disorders like EDS. Together, they can create a constant cycle of fatigue, pain, and discomfort. Furthermore, as both EDS and POTS are lifelong conditions, they require ongoing management rather than a cure. Treatments typically focus on symptom relief and improving quality of life.
"I already suspected EDS, POTS and M.E./CFS back then after doing a bunch of research, so I went to a centre for rare diseases. Unfortunately, they wrongly diagnosed me with somatisation disorder."
With their research in hand, our interviewee bravely sought help from a centre which claimed to specialise in rare diseases. They hoped this would bring clarity and relief after years of struggling with these unexplained symptoms. Unfortunately, however, it would instead lead to a devastating misdiagnosis that would have long-lasting consequences, as the doctors dismissed the possibility of a diagnosis of EDS, POTS, and M.E and instead focused on psychological treatment.
"They diagnosed me with somatisation disorder, which was completely wrong," they explain.
Somatisation disorder is a psychological condition in which a person experiences physical symptoms that are thought to stem from emotional distress rather than from a physical illness. In this case, the diagnosis suggested that the array of debilitating symptoms our interviewee was experiencing had no organic cause, instead implying it was all "in their head."
As a result, they were subjected to two rounds of in-patient therapy designed to address what was believed to be a psychological issue. They recall, "These therapies only worsened my health rather than improving it".
The physical strain of the treatments, combined with the emotional toll of not being believed, took a significant toll on our interviewees' health as, during one of the admissions, they began to develop symptoms that they hadn't experienced before. These symptoms, which included non-epileptic seizures, added yet another layer of complexity to their already challenging health journey.
"I started having seizures, and it was terrifying," they recount. Unfortunately, however, their case became even more misunderstood by doctors because of this and many of them continued to focus on psychological explanations.
"In June 2021, I got the COVID-19 vaccine, and, unfortunately, this triggered a very bad flare-up...I never fully recovered from this crash and have had to use a wheelchair ever since."
Unfortunately, in 2021, after receiving the COVID-19 vaccine, our interviewee's health journey took an even more dramatic and devastating turn as it triggered an unforeseen and life-altering flare of symptoms.
"It triggered a terrible flare-up. I ended up in the hospital for a month and spent another three months in rehabilitation," they recall, as this sudden crash exacerbated their existing fatigue and pain to a level they had never experienced before.
For an entire month, they underwent extensive medical evaluations and treatments as doctors tried to stabilise their health. It was a time filled with uncertainty and fear as new and worsening symptoms continued to emerge. Once their condition was stable, they were transferred from the hospital to a rehabilitation clinic for the next three months to re-learn how to navigate their life in a body that now had even more restrictions than before.
Despite this intensive rehabilitation, however, our interviewee never fully recovered from the crash, and the impact lingers to this day, leaving them with lasting symptoms that have dramatically altered the course of their life. They explain, "I've had to use a wheelchair ever since", highlighting how this flare-up has permanently affected their mobility and independence.
"Against my doctor's recommendations, I continued doing high school, which on the one hand led to graduation but on the other hand to another really bad crash. This time, I ended up between hospital and rehabilitation stays for 15 months."
In the subsequent years since this incident, our interviewee was ultimately diagnosed with several of the conditions they had long suspected, the first being ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) as well as autism spectrum disorder.
Desperate to maintain some semblance of normalcy - even though their doctors advised against it - they persevered through the challenges of high school and succeeded in earning their diploma and graduating. However, this achievement came at a devastating cost, as the exertion took a toll on their health, leading to another significant 'crash'. This severe flare necessitated another 15-month period split between hospital stays and rehabilitation. It was during this time that they also received additional diagnoses of EDS (Ehlers-Danlos syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome).
Unfortunately, they continued to experience the emotional toll of being misunderstood by medical professionals. They say, "There was a lot of gaslighting. I was accused of faking and told that everything was psychological. It was incredibly damaging." This kind of medical gaslighting, where patients are dismissed or not believed, is a common experience for many living with chronic illnesses, especially when the medical community does not fully understand their conditions.
Now living in an assisted living facility, they describe the experience as mixed. They express their conflicting emotions, stating, "It's not where I want to be, but at least I can see doctors who understand my conditions."
Following their transition, they have received further medical diagnoses, including neurogenic bladder dysfunction, GERD (gastroesophageal reflux disease), and a potential diagnosis of gastroparesis, although this is still pending confirmation.
The daily challenges they face are daunting. "My main symptoms are post-exertional malaise (PEM), fatigue, pain, dizziness, tachycardia, heat intolerance, nausea, vomiting, and seizures."
Eating and drinking have become particularly difficult, with their intake limited to soft foods and small amounts of liquid. Consequently, they rely on daily saline IVs to maintain hydration and manage their health. Additionally, they have also had to learn to self-catheterise to manage their neurogenic bladder dysfunction.
They also explain, "I can only sit for about 30 minutes per day without getting a flare-up, and I try not to go over this limit whenever possible”.
No matter how small, every action must be carefully weighed against the risk of worsening their condition.
To find out more about our interviewees condition, click the links below:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness.
Ehlers-Danlos Syndrome (EDS)
Postural Orthostatic Tachycardia Syndrome (POTS)
"I think the biggest challenge for me is accepting this is now my reality. I've always had a pretty clear plan of how my life should look like. But the reality is that life will never look how I imagined it."
Yet, despite the immense physical challenges, the emotional toll is perhaps even heavier. "I think the biggest challenge for me is accepting this is now my reality," they reflect, "I've always had a pretty clear plan of how my life should look. But the reality is, life will never look how I imagined it, and that's hard to come to terms with." Letting go of the dreams and plans they had for their future is a deeply painful process.
They describe the constant internal struggle to hold onto hope, even when faced with the harsh reality of their conditions. "I find myself always negotiating with myself, wondering if there's still an option if maybe things could change. I don't want to let go of my dreams—I can't. And it crushes me time after time when I realise those dreams aren't compatible with my reality."
Although this depiction of their ongoing internal battle between hope and acceptance is a testament to their strength, it is also undoubtedly an exhausting emotional process that feels incredibly isolating.
"My conditions aren't curable. Some of them are genetic. I will never live my life without them."
While it's undoubtedly clear that living with complex chronic illnesses has impacted our inspiring interviewees' quality of life, they show remarkable resilience as they continue to search for light in the darkness, particularly through various forms of creative expression.
"I like to be creative and express myself whenever possible," they share, highlighting how creativity and connection offer a much-needed source of joy.
Amidst the day-to-day struggle of managing multiple health conditions, finding comfort in music and art has become an essential outlet for our interviewee.
"Music is one of the most important outlets and comforts for me," they explain. Whether it's discovering new songs or revisiting familiar playlists, music provides an emotional escape, and when their energy allows, they enjoy singing or playing the piano. In fact, they have played the bassoon for over ten years and hope to return to the instrument one day. "I've actually played the bassoon for over ten years, and I hope that I'll be able to do that again sometime," they say, holding onto the possibility of reclaiming that part of their life.
"I like to be creative and express myself whenever possible."
Beyond music, their creativity extends into visual art and writing. "Other creative things I like to do are drawing and painting, cross-stitching, journaling, and writing," they reveal, noting that each activity allows them to express themselves in unique ways.
They also share, "I like deep-diving into topics that interest me at that moment or researching connections between different things." Engaging their mind and exploring new ideas provides a sense of accomplishment and purpose, particularly when physical activity is limited. When possible, they also practice yin yoga or guided meditation, finding moments of peace in gentle movement and mindfulness.
"I've been active as a volunteer on a mental health website since 2017, and the fact that I've been able to help a few people during this time is a big achievement for me."
Furthermore, while chronic illness often limits their ability to take on large projects or commitments, they take pride in their volunteer work. Since 2017, they have been an active volunteer on a mental health website, helping others navigate their own challenges. "The fact that I've been able to help a few people during this time is a big achievement to me," they reflect.
This work has allowed them to give back to the community and served as a source of personal fulfilment. They hope to one day extend this work into peer support within their local area, confident that their online experience will be invaluable.
"If I could write a note of hope to my younger self, I would say...I know it looks like there's no hope around anymore, but I assure you that things will change. Everything changes all of the time – that's life. It will never stay as bad as it is in one moment forever."
In a life shaped by the unpredictability of chronic illness, this individual continues to find joy, purpose, and hope in the small moments. Embodying what the A Note of Hope project is all about!
Thank you for sharing your inspiring story for the 'A Note of Hope' project.
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