"I’m immensely grateful to have the opportunity to share Harriet's story. At just 15 years old, Harriet has triumphed over medical gaslighting, and she hopes that by sharing her journey with A Note of Hope, she can offer hope to others going through similar ordeals." - Ellie Howe, creator and author of 'A Note of Hope.'
Since childhood, Harriet has struggled with widespread musculoskeletal pain. Initially, she noticed this discomfort intensifying after exercise and it was dismissed as typical growing pains. However, as Harriet reflects on this time, she acknowledges experiencing other symptoms, such as swallowing difficulties and extreme hypermobility, which were overlooked and wonders if these may have hinted at the challenges ahead.
As she entered into adolescence, Harriet's condition worsened significantly. By 2020, she began experiencing frequent subluxations (partial dislocations) in her joints.
“For as long as I can remember, I have been suffering from widespread musculoskeletal pain, but it was often just dismissed as growing pains. When I was younger, this was only brought on by exercise but looking back, there were so many other signs and symptoms such as hypermobility and swallowing issues. In about 2020, my symptoms worsened dramatically. My joints started dislocating and subluxing frequently, and my pain became constant and chronic." - Harriet.
Harriet began to research at home to try and uncover the root cause of her perplexing symptoms. Eventually, she came across hypermobile Ehlers-Danlos syndrome (hEDS) and Joint Hypermobility Syndrome (HSD). These conditions are characterised by joint hypermobility, where joints extend beyond the normal range of motion causing pain and instability. Individuals with these conditions are at an increased risk of injuries such as dislocations and subluxations, and may experience various other symptoms, including chronic pain, easy bruising, gastrointestinal issues, and cardiovascular problems.
However, when Harriet approached her General Practitioner (GP) about hEDS and HSD, he dismissed her concerns. Her experience underscores one of the most significant challenges individuals with these disorders face: the dismissal and invalidation of their symptoms by healthcare professionals.
“After doing some research, I went to the GP asking if it was hEDS or joint hypermobility syndrome (now known as HSD). Before he had even seen me, he dismissed the fact that it could be hEDS.” - Harriet.
Unfortunately, there's a growing stigma attached to these conditions. Many patients find themselves in situations where doctors attribute their symptoms to psychological factors or dismiss them as exaggerated, leading to delays in diagnosis and treatment. One contributing factor to this stigma is the absence of diagnostic tests that can definitively indicate if these conditions are the root cause of a patient's symptoms.
Currently, professionals rely on the Beighton Score, a simple clinical tool used to assess joint hypermobility, as one of the primary methods to diagnose hEDS. Patients perform a series of movements - such as bending their thumb back towards their wrist or forearm - and each maneuver is then assigned a score of 0 or 1 based on the individual's ability to perform it. A score ranging from 0 to 9 is then calculated based on these manoeuvres, with a higher score indicating more significant joint hypermobility.
A score of 5 or more out of 9 on the Beighton Score indicates generalised joint hypermobility and is often required to diagnose hEDS. During her assessment, Harriet scored 9/9 on the Beighton Score, meeting the maximum requirements for an hEDS diagnosis, especially considering her other symptoms. However, Harriet's doctor remained unconvinced and offered no diagnosis or further support.
“When I went to the appointment, I scored 9/9 on the beighton score so he just told me I was hyper mobile. There was no intervention or help given to me.“ - Harriet.
This had a devastating impact as Harriets health continued to deteriorate.
"One day I came home from school and I could barely walk,” she recounts, “my hips were subluxing with every step as my knees hyperextended”.
After months of struggling to be heard, Harriet finally received a glimmer of hope through a referral to a physiotherapist. However, this hope was short-lived. The appointment was initially labeled non-urgent, and, although this was corrected, Harriet languished on the waiting list for months. When she finally saw the physiotherapist in person, seven months later, she was devastated by their approach.
“I had a terrible experience,” Harriet explains, “she told me it was all in my head and that I was drug seeking”.
Harriet's experience sadly reflects an everyday reality among individuals with Ehlers-Danlos Syndrome (EDS). The impact of such encounters within the healthcare system can be devastating, and Harriet acknowledges enduring significant trauma due to her interactions with medical professionals. However, by bravely sharing her story, she emerges as a remarkable advocate, reminding healthcare professionals to prioritise compassion and understanding, especially when dealing with young patients.
“One day I came home from school and I could barely walk, my hips were subluxing with every step as my knees hyperextended. A referral was made to physiotherapy at my local hospital. After three months of waiting it was upgraded to an urgent referral and eventually after 7 months I had my first appointment. I had a terrible experience with the physiotherapist, she told me it was all in my head and that I was drug seeking.” - Harriet.
A year later, Harriet finally received some validation after being referred to a new consultant. Although she was still denied a formal diagnosis of hEDS, this consultant acknowledged that Harriet's debilitating symptoms warranted attention, providing a semblance of support at last.
Now, Harriet has officially been diagnosed with asthma, anxiety, and severe joint hypermobility syndrome with chronic musculoskeletal pain. Although she is disappointed that she is still fighting for a diagnosis of hEDS, as well as Postural Orthostatic Tachycardia Syndrome (POTS), a condition closely linked to hEDS, which causes fainting and dizziness episodes. Harriet’s resilience shines through as she continues to push for a diagnosis of hEDS whilst advocating for herself and others in the process.
“A year later, I got a consultant who told me I didn’t meet the criteria for hEDS (I’m still 90% sure I do so I’m still fighting for the diagnosis) but he would help me anyway due to my debilitating symptoms., Some of these symptoms include severe hypermobility, fatigue, daily subluxations and dislocations, pre-syncope, limb weakness, and many more. My official diagnosis is Asthma, anxiety, severe joint hypermobility syndrome with chronic musculoskeletal pain (suspected hEDS) and suspected POTS.” - Harriet.
To find out more about the conditions mentioned in Harriet's story, click the links below:
hEDS (Hypermobile Ehlers-Danlos Syndrome)
Joint Hypermobility Syndrome (HSD)
Reflecting on her journey, Harriet acknowledges the profound impact of her experience with healthcare professionals dismissing her symptoms and the effect this has had on her emotional well-being.
"My hardest challenges have been my experiences with medical gaslighting, which has caused me a lot of trauma," Harriet shares. Medical gaslighting, the invalidation or dismissal of a patient's symptoms or concerns by medical professionals, can leave many, like Harriet, feeling powerless and invalidated, “I want people to know that they are not alone in experiencing medical gaslighting," she continues, "It is a terrible thing that we shouldn’t have to face to receive diagnosis and treatment”.
“My hardest challenges have been my experiences with medical gaslighting, which has caused me a lot of trauma. I want people to know that they are not alone in experiencing medical gaslighting. It is a terrible thing that we shouldn’t have to face to receive diagnosis and treatment. I have experienced it more times than I can count from medical professionals.” - Harriet.
In addition, Harriet also shares how she has found it challenging to come to terms with the loss of mobility, due to frequent subluxations.
“Another thing that I struggle with a lot is losing my mobility and accepting my conditions," she shares. At only 15, Harriet confronts challenges that most of her peers can scarcely fathom, let alone relate to, as she is forced to navigate a world of pain and limitation far beyond her years. Additionally, her sense of isolation is compounded by the fact that she doesn’t know of anyone else of a similar age in the same situation.
“Another thing that I struggle with a lot is losing my mobility and accepting my conditions as well as feeling that I am alone in my situation due to not knowing anyone else with chronic illness.” - Harriet.
Harriet's sense of loneliness and misunderstanding only amplifies the heartbreaking nature of what she has shared about her experience of medical gaslighting. To feel dismissed and invalidated by those who are expected to understand and support you in the face of illness only worsens the emotional burden of coping with these conditions and is something no one should have to experience.
Despite all of these challenges, Harriet has shown remarkable determination and resilience in trying to get the help she needs. Instead of giving up in the face of unsupportive professionals, she has continued to advocate for herself and has now undergone occupational therapy (OT), participated in a clinical psychology pain management group, and started a regimen of new medications. Most importantly, Harriet has connected with a new physiotherapist, Kate, who has been incredibly supportive and knowledgeable throughout her treatment. To Harriet, Kate has become an invaluable ally in her journey.
“Recently I have had OT, clinical psychology pain management group, new meds (amitriptyline) and I now have an absolutely amazing physiotherapist who is being amazingly supportive and knowledgeable throughout my treatment.” - Harriet.
Harriet enjoys being with her dog, Elsie, the cockapoo, who brings her endless comfort and companionship. She also finds comfort in nature, crafting, and music, as well as in the unwavering support of her friends. All of this, coupled with encouragement from Kate, uplifts her spirits and fuels her determination to persevere.
“Some things that bring me joy in hard times are my dog (Elsie the cockapoo), nature, crafting, music, friends and receiving support and encouragement from my amazing physiotherapist Kate.” - Harriet.
Furthermore, Harriet has recently achieved a significant milestone in her journey. Previously, she could only manage to walk for 5-10 minutes before being overwhelmed by extreme pain and joint instability. However, with the invaluable guidance of Kate and her own commitment to her physio exercises, Harriet has been able to extend her walking time to approximately 30 minutes. While she acknowledges that this accomplishment fluctuates daily, it still represents considerable progress that she hopes she can continue to sustain.
“One of my latest achievements is regaining some of my mobility. Previously I was only able to walk for 5-10 minutes without becoming extremely unstable but now thanks to the help of Kate and working extremely hard on my physio exercises, I have been able to walk for up to about 30 minutes. This still varies day to day but it is an achievement that I hope I am able to maintain for at least the next few months.” - Harriet.
In a reflective note, Harriet shares words of encouragement she wishes she could convey to her past self.
“If I could write a note of hope to my past self," she reflects, "I would say that you are going to face challenges that will affect your everyday life, but you will eventually get help." She offers her younger self-compassion and understanding, in direct contrast to the experiences she has faced in the medical system, showcasing an emotional maturity beyond her years.
Acknowledging the difficulty of accepting her new reality, Harriet admits, "It's going to be hard to accept, but do not give up".
This poignant reflection encapsulates how Harriet, at such a young age, has navigated her journey so far with remarkable resilience. Her strength and determination offer inspiration and hope to anyone grappling with similar challenges.
“If I could write ‘a note of hope’ to my past self, I would say that you are going to face challenges that will affect your everyday life but you will eventually get help. Keep fighting for help and eventually you will find the right people that will try their hardest to help you. It’s going to be hard to accept (it still is!), but do not give up. Keep fighting for answers - which is still important for me to remember now!” - Harriet.
“I would also like to say thank you to Danie, an amazing teacher who has helped me and encouraged me to reach out for help, as well as Kate my physiotherapist who has helped me more than any other medical professional and has shown me that there is hope and that my mobility may not get worse and to not give up. They are both unlikely to see this but just incase, thank you, you both mean the world to me.” - Harriet.
Thank you Harriet for sharing your inspiring story for the 'A Note of Hope' project.