This is dedicated to my fellow Zebras. I hear you. I see you.
This is not an easy story to share, but I want to do so in the hope of bringing greater visibility to conditions that are often overlooked and poorly understood. This reflection explores my experience as both a patient and doctor navigating hypermobility and its associated conditions. My aim is to help reduce delays in diagnosis, encourage clinicians to listen to and believe patients’ experiences, highlight the consequences of fragmented care and diagnostic uncertainty, encourage greater clinical advocacy, and promote more compassionate, informed, and coordinated care for patients who too often feel that they do not belong anywhere within the health care system.
Writing this makes me vulnerable. As a rheumatology advanced trainee, I know that expressing these views may invite judgment from colleagues and senior doctors, particularly when I am challenging attitudes within my own profession. But I also feel a responsibility to use the voice I have. I have spent many years experiencing what it is like to be the patient who does not have an explanation, who does not know where to turn, and who has to advocate for themselves simply to be heard. Many patients do not have the medical knowledge or professional position that I have had. If I remain silent despite having experienced this from both sides, I cannot expect those patients to be heard either.
If sharing my experience can help another patient feel believed, help a clinician recognize a condition they might otherwise overlook, or encourage our profession to reconsider how we approach these patients, then I believe it is worth making myself vulnerable in doing so. Why now? Because I finally have the answers I spent years searching for. Because I have carried this experience largely alone, and it is finally time for me to talk.
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In 2022, I was diagnosed with hypermobility spectrum disorder (HSD) and postural orthostatic tachycardia syndrome (POTS). It took almost twenty years to receive these diagnoses, during which I experienced prolonged diagnostic uncertainty, dismissal of symptoms, and multiple occasions of medical gaslighting. This journey was marked by frustration, grief, suffering, and the challenges of living with conditions that were invisible to others.
Shortly after receiving these diagnoses, I disclosed them to a doctor friend. Their response was, “Aren’t those conditions all in your head?” I remember feeling shocked and speechless. After finally obtaining answers following years of symptoms and uncertainty, I had not expected my experiences to be immediately questioned. That moment highlighted for me the significant lack of awareness and persistent misconceptions that continue to surround many invisible illnesses, even within the medical profession itself.
Several years later, as a rheumatology registrar, I have become increasingly aware of the attitudes that can surround hypermobility and its associated conditions within medicine. I have heard comments questioning the legitimacy of patients’ symptoms, frustration about the clinical time and resources these patients require, and suggestions that hypermobility does not have a place within rheumatology. I have also heard colleagues describe lengthy consultations with hypermobile patients as time that could have been better spent elsewhere.
These conversations have taken on a different meaning since disclosing my own diagnoses to colleagues within the rheumatology profession, that I trusted. On occasions, I have found myself present while the very conditions I live with were discussed dismissively or treated as a source of humor, right in front of me, by the very colleagues who knew my diagnosis. I did not always know how to respond. Instead, I often sat quietly, aware of the uncomfortable gap between what was being said and what my colleagues knew about my own experience. HSD and Ehlers-Danlos syndrome (EDS) are not a joke or a funny matter. It has led to young patients seeking voluntary assisted dying for their conditions.
Invisible illnesses
Invisible illnesses are not uncommon. In Australia, 1 in 6 people lives with a disability, and approximately 80 percent of these disabilities are invisible in nature. Despite their prevalence, 1 in 10 Australians living with disability has experienced discrimination in the past year. Furthermore, as life expectancy increases and people live longer with chronic diseases, the number of years lived with disability due to chronic conditions has risen substantially, from 1.6 million in 2003 to 2.5 million in 2023.
There is a historical context to how we understand some of these illnesses. For centuries, unexplained physical symptoms in women were often attributed to “female hysteria.” Although this diagnosis has long since disappeared from modern medicine, its history is an important reminder of how easily physical symptoms that are poorly understood can be attributed to psychological causes, particularly when they occur predominantly in women. This includes female-predominant conditions such as HSD, EDS, polyendocrine metabolic ovarian syndrome, fibromyalgia, endometriosis, and chronic pelvic pain disorders. Medicine has undoubtedly progressed, but the experiences of patients today remind us that the underlying challenge has not entirely disappeared. The language may have changed, but the risk of dismissing symptoms because they are difficult to explain remains.
This is particularly relevant as patients are increasingly becoming well informed about their symptoms and potential diagnoses and seeking answers from specialists after years of uncertainty. Patients are often arriving at consultations having spent years researching their symptoms, joining support groups, and attempting to understand what their bodies are experiencing. For many, it reflects the reality that they have had to become experts in their own symptoms because no one else has yet been able to provide them with an explanation.
As awareness grows, the number of individuals seeking assessment and care for these conditions will continue to rise. The health care system must recognize this changing landscape and create the capacity, expertise, and pathways necessary to provide timely, compassionate, and evidence-based care for this growing patient population.
Being my own multidisciplinary coordinator
For many patients with HSD or EDS (which encompasses thirteen subtypes), the experience extends far beyond joint hypermobility. Associated conditions and complications can include mast cell activation syndrome (MCAS), small fiber neuropathy, pelvic organ prolapse, abdominopelvic compression syndromes, and neurodivergence. As a result, many of us find ourselves navigating an increasingly complex network of specialists.
When I was first diagnosed, I saw a cardiologist, clinical geneticist, ophthalmologist, immunologist, pain specialist, general physician, neurologist, and clinical pharmacologist, in addition to several allied health professionals. For my multiple symptoms, I trialed a vagus nerve stimulation device, low-dose naltrexone, and a variety of other medications.
It was a lonely and isolating experience. I am the only person in my family with the condition, trying to understand a diagnosis that was new to me while navigating its many manifestations. Despite being a doctor, I often felt that I had little ability to advocate effectively for myself.
In many ways, I became the coordinator of my own multidisciplinary care. I collected letters from one specialist to take to the next, repeatedly retold my history, and tried to piece together a coherent understanding of what was happening to me. There was little communication between the clinicians involved in my care, and the responsibility for connecting the dots often fell to me. When I was not believed, I collected medical literature to show to my GPs so I could get the referrals I needed. It was a horrendous experience.
The irony was that the very process of coordinating my care became another source of cognitive burden. The stress of navigating multiple appointments and advocating for myself often exacerbated brain fog. There were times when I would attend a specialist appointment already anxious about having to explain and justify my symptoms, only to leave afterwards struggling to remember what we had discussed due to brain fog.
Even as a doctor, with the medical knowledge and health literacy that should have made navigating the system easier, I found myself overwhelmed by the complexity of trying to coordinate my own care. I often wonder how much more difficult this must be for patients without a medical background.
Perhaps this is one of the greatest difficulties for patients with complex and multisystem conditions: We are often not just patients receiving care. We become the people responsible for coordinating it.
Growing up without an explanation
The diagnosis that proved most difficult for me to obtain was an explanation for my severe, medication-refractory constipation. My symptoms began when I was around eleven or twelve years old. Alongside symptoms that I now recognize as dysautonomia, I developed increasingly severe constipation and abdominal bloating. As a child, there were times when I would spend hours sitting on the toilet in severe pain, screaming as I tried to open my bowels. By my early teenage years, the bloating was so significant that I often looked pregnant, and was asked by strangers “how far along” I was.
I saw a gastroenterologist, who felt that I had irritable bowel syndrome. However, the severity of my symptoms continued to escalate. I was admitted to hospital with fecal loading and required bowel preparation to clear my bowels. Yet, despite the severity of my symptoms, there was still no clear explanation.
I was subsequently referred to a gastrointestinal motility specialist, but again, no definitive answer was found. I was barely investigated. I progressed through increasingly intensive treatments for constipation, including prucalopride, with little benefit.
At the same time, other symptoms were occurring that, in retrospect, were also part of a much larger picture. As a teenager, I saw a cardiologist because of chest pain. It was attributed to anxiety. I did not question this explanation at the time. When you are young, and a doctor tells you that your symptoms are anxiety, you assume they must be right.
Medical school did not give me answers
I entered medical school without a diagnosis. By the time I was studying medicine, my gastrointestinal symptoms had become severe enough that I was reduced to manually disimpacting myself because my rectum simply would not evacuate normally.
I was learning about hundreds of diseases, memorizing their presentations and understanding increasingly complex physiology, yet I never once learned about EDS, HSD, POTS, or many of the conditions that would eventually explain my own experience. The irony is difficult to ignore. I was training to diagnose other people while lacking the knowledge to understand what was happening to my own body.
I remember sitting in a car with a heart rate of 140 beats per minute. I had been told previously that my symptoms were anxiety, but I did not feel anxious. I continued to have episodes where my heart would race, accompanied by chest discomfort and a sense that something was seriously wrong. I would call my family and tell them that I thought I was having a heart attack. But I did not seek medical attention, because I had already learned that they would probably be attributed to anxiety.
Basic Physician Training while living with an undiagnosed illness
I studied for my Basic Physician Training examinations while experiencing symptoms of undiagnosed POTS. Again, these conditions were not part of the formal education I received during Basic Training. I had no framework through which to understand the relationship between my tachycardia, exercise intolerance, gastrointestinal dysfunction, brain fog, and other symptoms. There is a particular kind of helplessness in having symptoms that affect your daily life while still being unable to explain them, not because you have not looked, but because you do not yet know what you are looking for.
I sat my Basic Training examinations and passed them on my first attempt, despite studying through a significant flare of symptoms. I had always been determined. Perhaps that determination is part of why it took me so long to recognize how unwell I was. I kept going. I adapted. I took the elevator instead of the stairs to see the patient on level 5, and I learned how to manage my bowels myself. I found ways to function because I did not know that there might be another explanation.
Advanced Training, the increasing isolation and loneliness
After relocating interstate to pursue Advanced Training, I requested copies of my previous gastroenterology records so that I could provide them to my new gastroenterologist. I had never personally reviewed these documents before. Reading them brought me to my knees in tears. To my shock, my longstanding need for manual disimpaction had been attributed to obsessive compulsive disorder.
As a young woman, I had been forced to perform this distressing and deeply embarrassing act, often multiple times a day, removing pellet-like stool from my rectum because I lacked the normal urge to defecate. To see these symptoms reduced to a psychiatric explanation was devastating.
Looking back, it became apparent that alternative diagnoses had not been fully explored. I had never even undergone a colonoscopy, which now seems extraordinary given the severity and duration of my symptoms. At the time, I was a medical student and did not know enough to question whether further investigations should have been pursued.
It was only last year, twelve years since starting to manually disimpact, that I was referred to a colorectal surgeon who undertook the comprehensive evaluation I had always needed. This included a colonoscopy with rectal biopsies and investigations such as gastric emptying studies, small bowel studies, and ultimately a defecating proctogram. I will never forget the memory of when I finally received a diagnosis for the reasons why my rectum did not work properly.
The defecating proctogram that ultimately provided these answers is only available at certain centers in Australia and at limited times throughout the year. I undertook it while doing rheumatology Advanced Training. I traveled interstate alone, by bus, to undergo the test. Before the procedure, the radiologist asked about my symptoms. I remember saying, “I’ve been told it’s all in my head. All the previous investigations have been inconclusive. I don’t know why I bothered coming here today because this test will probably be inconclusive too.” I then briefly described years of manual disimpaction, severe constipation, bloating, and the profound impact these symptoms had on my quality of life.
He listened quietly and proceeded with the test. After I had expelled as much of the barium paste as I could, he asked if I was certain I was finished. I said yes. He encouraged me to try again, and to my surprise, more came out. He then paused the images and pointed to the screen. “This,” he said, “is a rectal intussusception.”
I had heard of intussusception occurring elsewhere in the bowel, but never in the rectum. I was stunned. He continued, “It’s not in your head. This is one of the common causes of chronic constipation in women and is related to pelvic floor dysfunction.”
Someone had finally validated what I had been going through. I finally had an answer. For several seconds, the world seemed to stand still. I remember wanting to hug him while sitting on a commode.
I cried tears of relief that answers had finally arrived. I cried for the years spent suffering without an explanation, for the countless episodes of dismissal and medical gaslighting, for grieving the loss of a normal bodily function at a young age, and for the uncertainty of what this diagnosis meant for my future, including the possibility of surgery. Most of all, I cried over the question that so many people with chronic illness ask themselves: “Why me?”
The final report later revealed not only a high-grade rectal intussusception, but also a rectocele and rectal prolapse. The underlying abnormalities in my connective tissue had affected my pelvic floor, my gastrointestinal function, and many other aspects of my body. The simple act of opening one’s bowels normally, something most people take for granted, became something I longed for.
Much of my journey with chronic illness was experienced alone, including investigations and procedures. Training required me to relocate frequently, often leaving me without established support networks. This is another aspect of navigating medical conditions among doctors that deserves greater recognition: Who are our support networks when we have to pack up and leave again and again for training?
Despite these challenges, I have been fortunate. I do not consider myself disabled by my condition, and I have been able to continue working full time without workplace adjustments, unlike many others living with hypermobility and associated disorders.
Being too scared to share
On medical officer job advertisements, there is often a statement about inclusion and diversity, reflecting an understandable commitment to creating workplaces in which people from different backgrounds and with different experiences feel welcomed and supported. Yet, throughout my training, I have not always felt that these principles were meaningfully reflected in practice.
Inclusion is not simply about whether someone is offered a position or whether an organization can demonstrate diversity on paper. It is also about whether people feel safe to disclose their circumstances, whether their differences are understood rather than judged, whether appropriate support is available when difficulties arise, and whether they are treated with the same dignity and respect as their colleagues.
For someone living with an invisible condition, this distinction becomes particularly important. A person may appear well, perform at a high level and meet all of the expectations of their role, while simultaneously navigating symptoms and challenges that are not visible to those around them. Disclosure should not result in a person subsequently feeling scrutinized, perceived differently, or made to feel that their health is an inconvenience.
I have come to understand that inclusion is tested not when everything is going well, but when someone becomes vulnerable. It is easy for an organization to state that it values diversity. The more meaningful question is what happens when an employee or trainee discloses something personal, asks for support, or does not fit neatly into the expected mold of a doctor or trainee.
I have not been fortunate enough to consistently experience that distinction between the values expressed in recruitment material and the reality of being a trainee. This has made me reflect on how much more needs to be done to ensure that inclusion and diversity are not simply statements accompanying a job advertisement, but principles that are genuinely experienced by the people working within the organization.
The irony is that medicine frequently speaks about inclusion and diversity, yet invisible disability can expose how conditional that inclusion sometimes is. We often celebrate diversity when it is visible and easily understood; we struggle more when someone’s difference is invisible, fluctuating, or difficult to explain.
For much of my career, I chose not to disclose my condition. Early on, I became aware of the stigma that can surround being a doctor with a chronic condition and worried that disclosure could affect future career opportunities. I had a friend who had a chronic condition, well managed, who was told to leave the workplace when she disclosed. I sought advice from colleagues who told me never to disclose my condition.
I remember interviewing for a competitive rheumatology Advanced Training position. I carefully considered whether to disclose my hypermobility diagnosis and lived experience of chronic illness. I hoped that it would be viewed positively, as a source of empathy, insight, and motivation to care for patients living with similar conditions.
In the interview, I chose to speak openly about my diagnosis, framing it as a strength rather than a limitation. I discussed my desire to contribute to the care of patients with hypermobility disorders, recognizing that rheumatologists are often involved in diagnosing and managing these conditions. I emphasized that my condition had never affected my ability to work or fulfill my professional responsibilities and explained how my experiences had deepened my understanding of the challenges faced by individuals living with chronic and often invisible illnesses. I believed that these experiences would allow me to provide more compassionate, patient-centered care and advocate for patients who frequently feel unheard or misunderstood.
I was unsuccessful in obtaining the position. When I later sought feedback from the head interviewer, I was advised, “It would be wise not to discuss any medical conditions you have.”
I remember feeling stupid, ashamed, embarrassed, and deeply disheartened. I struggled to comprehend that a doctor, or perhaps even an interview panel of doctors, might perceive an invisible medical condition as a liability rather than recognizing the strengths and perspectives it could bring.
I interviewed the following year, not disclosing my condition, and got onto the program. I became very good at not speaking about my conditions, and pretending that I was like everyone else, because my conditions were invisible.
Since entering rheumatology training, and experiencing what it is like to have these conditions questioned or dismissed within the medical profession, I have slowly found my voice. I remember being present for a rheumatology consultation involving a patient with Ehlers-Danlos syndrome. I had previously disclosed my own diagnosis to the rheumatologist. As we reviewed the patient’s history and numerous medical conditions, the rheumatologist asked, “How could this patient be a psychologist?” I remember feeling ashamed of having the very conditions I had disclosed. The same question could have been asked of me: How could I be a doctor?
On another occasion, I attended a gastroenterology-rheumatology multidisciplinary meeting involving consultants and registrars from both specialties. We were discussing several complex patients when a gastroenterologist described a patient with fibromyalgia and hypermobility and asked whether these conditions were “in the patient’s head,” stating that she felt they were.
I was shocked. What surprised me almost as much was that no one else in the room challenged the comment. I gathered the courage to stand up at the back of the room and say, “No, these conditions are not in the patient’s head. There can certainly be psychological consequences associated with living with these conditions, but there is substantial research supporting an underlying biological basis.”
The meeting continued as though I had said nothing. No one spoke up in support of what I had said. I felt deeply disappointed that, despite being in a room full of rheumatologists, I was standing alone.
I recognized something had changed in me. I could no longer remain silent. I had spent years learning how to hide my conditions so that I could be perceived as “like everyone else.” Now, I was beginning to understand that speaking openly could be part of changing how patients like me are perceived within medicine.
The importance of medical education
About two years ago, I responded to a Royal Australasian College of Physicians (RACP) request for suggestions of medical conditions that should be included in the College Learning Series (CLS). I replied saying that there should be greater education about HSD and EDS and its associated conditions. I was advised by the college that EDS was considered “relatively rare and specialized,” and that there were many conditions the college would like to include but could not accommodate within the size of the program.
I understand that medical curricula cannot cover every condition. However, I found the characterization of EDS as simply rare difficult to reconcile, with the combined prevalence of HSD and hypermobile EDS (hEDS), the most common subtype, estimated at approximately 1 in 600 to 900 people. POTS affects approximately 0.2 percent of the population. By comparison, Marfan syndrome has an estimated prevalence of approximately 1 in 5,000, yet receives considerably greater representation in Basic Physician Training curricula. I relayed these statistics to the college. The response was, “At this stage, CLS isn’t willing to include EDS/POTS as a topic.”
This is not an argument that these conditions should replace other diseases in the curriculum. It is an argument for recognition. For patients who may spend years searching for an explanation, even basic clinician awareness can make an enormous difference.
The hard truth of being a rheumatology trainee with hypermobility
Hypermobility has an important role within rheumatology. Rheumatologists are specialists in the assessment of joints, musculoskeletal disease, and connective tissue disorders, and are therefore well placed to assess patients presenting with significant hypermobility and determine whether further specialist investigation is required.
My concern is not that every patient with hypermobility needs ongoing rheumatology follow-up. Nor do I underestimate the pressures facing rheumatology services. Waiting lists are long, referral volumes are high, and there is a well-recognized shortage of rheumatologists across Australia. The Australian Rheumatology Association has highlighted that Australia has approximately 506 practicing adult rheumatologists, compared with a projected requirement of 749 to meet population need.
As a rheumatology trainee, I found myself in the uncomfortable position of being responsible for rejecting referrals for patients referred with hypermobility. This was particularly difficult when I understood the potential importance of an initial rheumatological assessment.
Any appropriately trained doctor may be able to diagnose HSD/EDS, but that does not mean rheumatology has nothing to contribute. A rheumatologist is well placed to assess whether a presentation is consistent with HSD or another connective tissue disorder, consider important alternative diagnoses, identify features that may warrant clinical genetics assessment, including where a vascular EDS phenotype is suspected, and facilitate appropriate baseline assessment and onward management where indicated.
I am not suggesting that every patient with hypermobility requires rheumatology assessment or ongoing rheumatology care. Nor am I suggesting that rheumatologists should carry the sole responsibility of caring for these patients. Our needs are often complex and individual, with some patients requiring more intensive input from other specialties. Rather, I believe there needs to be a clear pathway through which patients with significant symptoms or diagnostic uncertainty can access clinicians with appropriate expertise, including rheumatologists where appropriate. Once an appropriate diagnosis has been established and serious alternative diagnoses considered, ongoing care can be appropriately shared with primary care, allied health, and other relevant specialties. Rheumatologists are well placed to refer to many of the subspecialties and allied health services required by these patients.
A long waiting list reflects a systems problem, including workforce availability, funding and resource allocation, triage processes, and geographic distribution of specialists. I do not have all the answers to these system-level challenges, but collectively we need to start thinking about solutions. There are many rheumatologists actively taking on these patients and recognizing their importance in the patient’s health care journey. Part of the solution may ultimately involve clearer referral pathways, defined criteria for rheumatological assessment, further education for general practitioners and other specialists, multidisciplinary models of care, and appropriate discharge back to community-based management once serious pathology and relevant connective tissue disorders have been considered.
We also need greater investment in research into these conditions, which have for too long received limited attention in medical research and clinical education. Each specialty involved in a patient’s care should also communicate with one another, rather than leaving the patient to become the coordinator of their own health care.
Looking forward
I have spent much of my life trying to understand what was happening to my body. I have also spent much of my career learning how to understand what is happening to other people’s bodies. Living on both sides of the consultation has changed the way I practice medicine.
I know that medicine cannot always provide an immediate answer. I know that health care systems are under pressure, that specialists are overstretched, and that not every patient can be seen by every specialist. But I also know what it feels like to sit on the other side of the consultation room, anxious and exhausted, after years of searching for an explanation. Sometimes what a patient needs most is not an immediate diagnosis or a perfect treatment plan, but to know that someone believes them, is willing to listen, and will help them find the next step.
I look forward to the day when we have multidisciplinary, streamlined clinics specializing in the assessment and management of EDS, HSD, POTS, and their associated conditions. Clinics where rheumatologists, gastroenterologists, clinical geneticists, immunologists, neurologists, and psychiatrists work alongside allied health professionals, including exercise physiologists, physiotherapists, dietitians, social workers, and occupational therapists, to provide genuinely coordinated care. I look forward to the day when a patient living in rural or regional Australia can access this expertise through telehealth, without having to repeatedly travel hundreds of kilometers to see individual specialists. I look forward to the day when a patient living nearby can see multiple members of the multidisciplinary team within one or two coordinated visits, rather than navigating a fragmented system over years. I look forward to the day when these clinicians sit around the same table and discuss each patient’s presentation together, integrating their different perspectives to develop a coordinated and individualized pathway of care. I look forward to the day when we have expanded research into these conditions so we better understand them to better treat them. Most of all, I look forward to the day when we no longer have patients waiting twenty years to receive a diagnosis, to finally have their experiences recognized, their symptoms understood, and their care appropriately coordinated.
I have finally found answers to many of the questions I spent years asking. I now feel able to speak about the experiences that I once carried quietly. I hope that by doing so, I can contribute, in however small a way, to a health care system in which patients with invisible and poorly understood conditions no longer have to become their own advocates, coordinators, and experts simply to be heard.
Resources
- Ehlers-Danlos Australia
- Connective Tissue Disorders Network Australia
- Australian POTS Foundation
- ASCIA position paper, “Diagnosis and Investigation of Mast Cell Activation Disorders and Syndrome“
Mogeshni Govender is a rheumatology advanced trainee with the Royal Australasian College of Physicians (RACP), with a background in hematology and internal medicine. Govender holds a Bachelor of Medical Sciences and a Doctor of Medicine.
Clinical and research interests center on hypermobility and its associated conditions, and on the connective tissue diseases. Alongside training, Govender writes about medicine, advocates for patients, and works toward a better health care system.
Govender’s writing has appeared in InSight+, the news and opinion publication of the Medical Journal of Australia, including essays on the advantages of working regionally and the healing power of art for doctors and their patients. Peer-reviewed work spans rheumatology and critical care, including coauthored research on vascular compression syndromes in Ehlers-Danlos syndrome and hypermobility spectrum disorder, a report in the International Journal of Rheumatic Diseases, and first-author research on surfactant and lung function after cardiac surgery. Govender shares updates on LinkedIn.
