Help create an opportunity to learn together
BMJ 2024; 385 doi: https://doi.org/10.1136/bmj.q868 (Published 12 June 2024) Cite this as: BMJ 2024;385:q868
- Clare Sadgrove (nee Stacey)
I had my first major vascular event in my early 30s. Even though I knew I had vascular Ehlers-Danlos syndrome (vEDS), it was still a massive shock. I hadn’t prepared myself for an emergency event because I wasn’t very engaged with my diagnosis.
Living in fear
Living with vEDS and managing my health requires a constant risk assessment: from avoiding lifting something too heavy, to knowing when to access medical care, because even the most minor and innocuous symptom can be an indication of a serious complication. It is exhausting. It can also be difficult to know when and where to go for support. I fear being perceived as just anxious if I seek medical care for concerns that turn out not to be serious. But I don’t want to dismiss symptoms that could be life threatening.
The fear of spontaneous arterial and hollow organ rupture lurks constantly in the back of my mind. I don’t feel safe in my own body, so even a mild unexplained pain can provoke fear, and it is a daily battle to manage anxiety. I am always open with doctors if I know that I am struggling to be objective because I am scared.
Finding belief and trust
Although I had a confirmed diagnosis of vEDS, my symptoms were often not attributed to my condition, and a pattern of misdiagnosis emerged. Not realising how unwell I was, healthcare practitioners did not investigate my concerns, or would discuss discharge. I became terrified, not only of having a life threatening complication, but that I might not be believed if I said something was wrong.
Sometimes health professionals don’t realise that my vascular complications can start very subtly, and progress very quickly. Because of the difficulties I have faced accessing appropriate care, it is extremely important to me that I build good relationships with my care team. The doctors I trust are those who consistently take seriously my concerns—those who have a low threshold for monitoring and investigations, and who are open about their knowledge of vEDS, especially if they haven’t had a lot of experience seeing people like me. They give me more confidence to seek support for seemingly minor symptoms that could be serious. Having access to this support is what makes the biggest difference to my quality of life and health outcomes.
Learning together
Following a variety of difficult experiences in hospital, I have had many open conversations with doctors involved in my care. I have really valued the opportunity for collaborative learning and reflection. Insights into what they were thinking have helped me to heal emotionally, manage my own expectations, and better advocate for myself. I realise the problem is often not that they didn’t believe me, but rather that they didn’t understand or appreciate the complexity of my condition.
I don’t want to be an “expert patient.” It is not a term that I feel comfortable with. I just want understanding and collaboration with doctors, so that together we can act upon important, but often subtle, changes in my health.
What you need to know
Vascular Ehlers-Danlos syndrome can make patients feel they are living in fear of their own bodies
Building trust with patients is important to ensure that concerns are believed and taken seriously
Creating an opportunity for clinical teams and patients to create a plan together helps understanding for everyone
Education into practice
How can you help patients feel that you believe their concerns and are addressing them?
When could you create an opportunity for collaborative learning with your patient?
Additional information
NHS Ehlers-Danlos syndrome (EDS) national diagnostic service. https://www.lnwh.nhs.uk/EDS-National-Diagnostic-Service
Annabelle’s Challenge. Charity that promotes awareness and medical research into vEDS. https://www.annabelleschallenge.org/
Footnotes
Competing interests: none