October is Dysautonomia Awareness Month, and this month has been a tough one for me.
I'm mindful of how someones negative experience's can impact the thoughts and feelings of other's who may be going through something similar; however I'm also keen to be honest about my experiences with Dysautonomia and PoTS (Postural Orthostatic Tachycardia Syndrome).
Postural Orthostatic Tachycardia Syndrome (PoTS) can be a life altering and
debilitating health condition. Simply standing up can be a challenge for
affected people as their body is unable to adjust to gravity. (PoTS UK)
According to Dysautomoia International the average wait for a PoTS diagnosis is 5 years and 11 months, (PoTS UK believe the average wait to be even longer, at 7 years). They also highlight that 85% of PoTS patients are told that the symptoms they've experienced are "all in their head", or given similar psychiatric labels prior to receiving a PoTS diagnosis. They urge for further investigations into PoTS to search for underlying or contributing conditions such as autoimmunity, Ehlers-Danlos syndrome or mast cell disorders.
For me, diagnosis took much longer than the average, however I felt a huge sense of relief when I was diagnosed - to finally have a better understanding as to why my body was acting the way it was, and that I hadn't been "stressed" or "depressed" or imagining my symptoms.
I was invited to a management group following my diagnosis. I felt welcomed. I felt believed. I was among other patients who had experienced similarly difficult journeys in order to receive their diagnoses - but we were told that we were finally in the “right” place. A “safe” place. A place where our seemingly unexplainable symptoms could be explained, and investigated and TREATED!
Oh I was so optimistic - and so was my dad who accompanied me. We finally knew why I’d felt so unwell for years, and we believed we were in a place that could help. We trusted they would help.
“The trust that patients invest in healthcare professionals and their advice has been shown to facilitate positive clinical outcomes, although there is evidence that patient trust in expertise, including healthcare professionals, has been declining over the years.
Trust between a patient and physician can encourage a patient’s willingness to seek care, encourage patients to submit to examination and treatment, enhance the likelihood of return for follow-up care, increase patient receptiveness to health promotion counseling, facilitate health information exchange, enhance the quality of interaction between patients and physicians, facilitate disclosure by patients, enable providers to encourage necessary behavioural changes, and may grant patients more autonomy in decisionmaking about treatments.” - Do your patients trust you?: a sociological understanding of the implications of patient mistrust in healthcare professionals, Samantha B Meyer & Associate Professor Paul R Ward, Australasian Medical Journal; Vol 1, 2008.
Despite the length of time it took for me to be diagnosed with PoTS, I still trusted in the clinicians whose care I was under. I'd been referred to them by my local cardiologist because I was told they were the "experts" in PoTS.
However, because of my treatment since, or lack of treatment, my trust has wavered.
I’m well aware that there is no cure for PoTS - but there are treatments available that can greatly improve the symptoms of Dysautonomia and PoTS. Despite highlighting my symptoms at each appointment, trying to express the impact these symptoms were having on myself mentally and physically to the point I was struggling to work - I was simply told to just keep doing what I’m doing:“drink more water, eat more salt”.
I was then discharged without my knowledge - or my GP’s - despite having asked for more help.
I feel like I've been gaslit all over again. That my symptoms aren't serious enough to warrant care from my doctors. That this is what my life will always be like - fatigued, weak, sick, in pain, unable to progress in my work or social life because of my symptoms.
Working for the health system and being a patient has brought about an abundance of mixed feelings and emotions for me in recent months. Many hospitals and health trusts will have a set of core values they aim to follow in all that they do - to be "respectful" to all, treat patients with "compassion" and to be "accountable" - they're full of buzz words like "safety" and "kindness". It's drummed into staff in the signatures of emails, in posters on walls, in mandatory training and in yearly appraisals - but what do you do when you're a patient and you don't feel that these values have been applied to your care?
The physical and mental health and wellbeing of patients should be paramount in medical care, however I'm now in the process of being re-referred to a place I'm not sure I can trust to help me.
Clinician’s working in the NHS need to be able to better recognise the symptom’s on PoTS, and have treatment pathways in place for patients diagnosed with such conditions - but they also need to have more trust in their patients when they come to them with concerns. "Health and high quality care for all" - NHS England.
Photo by Kelly Sikkema on Unsplash
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