Lilianna Mint – Young Women with POTS

Can you share a little about the onset and how you came to get a diagnosis?

I started noticing symptoms in my final year at school while studying for A-levels. These included nausea, stomach issues, headaches which I put down to stress at the time. I also thought these symptoms were normal in teenage girls and so I ignored them and continued with my studies. I moved up to Nottingham to start at Nottingham Trent University studying Psychology. My first term was extremely busy. Being away from home added to the pressure of studying and making new friends. I, again, pushed aside any symptoms I felt. I noticed that I tended to ‘crash’ early afternoon and feel incredibly tired to the point that made me feel physically ill.

My symptoms were, what I thought to be, manageable at the time. Looking back now I realise it was not a healthy way of living. At the end of my first year of university I moved back home for summer. This was when my symptoms got much worse and I realised that something must be wrong. I had been to the doctors a few times in those months: blood tests all came back normal.

It’s a very strange feeling getting frustrated at there not being anything wrong with you. I wanted to understand what was causing me to feel this way. And I hoped to learn that there was a way to stop it. My mental health was hugely impacted at this time. It was getting increasingly frustrating to be told nothing was wrong.

I went to see my doctor before I was going back to uni. I’d made a long list of all my symptoms and with some luck, my GP had heard of PoTS. She didn’t know much about it but she referred me to a cardiologist that specialised in PoTS. I saw them a week later. He diagnosed me with PoTS almost immediately. I had an echocardiogram, a 48-hour heart monitor and a tilt table test to confirm my diagnosis. But from my symptoms alone, he knew that it was PoTS that I had been suffering with for so long.

I got referred to other specialists to target particular symptoms. My mental health improved after getting my diagnosis and understanding what I could do to help manage my PoTS day-to-day. Having more control over my symptoms and knowing why I am experiencing them makes such a difference. It shows how important accurate and efficient diagnosis and treatment is.

Did you find gaps in support that prompted your interest in this area?

Definitely. I had spent months having tests done and telling doctors that something wasn’t right. Still it wasn’t until my mum came along with me to an appointment that I was finally taken seriously. 

I was also extremely lucky that my GP had heard of PoTS otherwise I could have gone much longer without knowing what was going on. Such delays are very common in PoTS diagnoses.

When I received my diagnosis, I was given ways to help with improving my symptoms. These included increasing salt intake, increasing fluid intake, recumbent exercises etc. These have certainly helped me with managing my symptoms and I do notice a huge difference if I don’t keep on top of it. However, I do feel that there is a lack of wellbeing support and follow ups. The focus of managing PoTS is on the physical, but not on the mental.

What inspired you to study psychology at University?

I studied Psychology at A-level and I fell in love with it. My Psychology teacher was one of the main reasons for that. His love for the subject was infectious and his encouragement and support throughout my final years at school made me realise that I wanted to continue studying Psychology.

Going to university and having the opportunity to be a part of different projects, I became very interested in research. After conducting my undergraduate research project, I realised that clinical research is what I want to pursue a career in. With my background in Psychology and my experience with PoTS, I have a good understanding of the link between the physical and the psychological. I want to continue developing this.

What PoTS related challenges did you face getting to/being at Uni? And how did you overcome them?

Starting university meant having the pressure of making friends and not missing out on opportunities where I could meet people. This was definitely difficult when experiencing symptoms in my first year. I felt like I would be at a disadvantage if I didn’t attend certain university or social events with new friends. I pushed myself a lot even when I didn’t feel good.

Living with PoTS when I didn’t know that it was PoTS was definitely the biggest challenge. Once I got the diagnosis it was reassuring to know the reason as to why I was feeling that way. Weirdly, it felt a relief. Having a reason to feel the way I was feeling made me look after myself a lot more. I no longer push myself to do things when I don’t feel up to it. I’m also able to manage symptoms much better.

Your final year project focused on young women with PoTS and the challenges they face, as well as how they meet those challenges. What was the hypothesis you were exploring?

We were put into ‘Project Labs’ for our final year projects, meaning our projects had to be relevant to the ‘lab’ we were in. Mine was the ‘Discourse and Identity’ Project Lab. This had three broad ideas that our research had to fall within: Gender, Identity & Health, Illness & Support or the interactions of gender, sexual safety and consent. I chose ‘Illness and Support’ as I knew that I wanted my research to focus on PoTS.

I wanted to understand the experiences of other women with PoTS. The research questions were: How do women construct their symptoms? How is support constructed in relation to the self and others and what impact does this support have? Critical discursive psychology was used to analyse this qualitative research. It allowed for thought about the broader discourses of health and illness, identifying what they are, how they impact women’s constructions of POTS and how they could work to support the management of the condition.

My final research question didn’t come until the very end when I had analysed my interviews and was writing up my report: ‘Constructing support: A critical discursive approach to women’s management of Postural Orthostatic Tachycardia Syndrome (POTS)’.

In describing the way you framed your study and your approach, you use the word ‘constructed’ several times. Does it have a specific meaning within this field of study? Many people with PoTS may read a phrase like ‘How do women construct their symptoms’ and respond ‘they don’t – they just ‘have’ symptoms!’

Within the ‘Discourse and Identity’ Project Lab, there was a strong focus on social constructionist approaches. Although PoTS is a biological condition, it is also a socially constructed experience based heavily upon social and cultural contexts. Social constructionism refers to how perceptions of the world are shaped, not by objective reality, but the way in which people make sense of and describe their experiences. Social constructionists emphasise the importance of language in constructing reality as people perceive it. It doesn’t mean that symptoms are made up. In the context of my study, I absolutely viewed PoTS symptoms as real physical experiences. I focused on language; how women talked about and understood those experiences, particularly within broader social and medical discourses surrounding chronic illness.

Women with PoTS may draw on particular ways of describing their symptoms:

• to be believed
• to justify their illness experience
• to navigate misunderstanding from others

Within Critical Discursive Psychology, ‘discourse’ refers to socially shared ways of talking about and understanding the world. In the context of health and illness, discourse can shape how conditions like PoTS are viewed by society, healthcare professionals and the individual themself. These discourses can influence how women with PoTS describe their experiences and how they feel they are perceived by others.

When I asked, “How do women construct their symptoms?”, what I was really asking was:

• how do women frame and make sense of their experiences of PoTS?
• what do those descriptions reveal about the social challenges associated with living with the condition?

My research aimed to better understand how support, validation and illness identity were negotiated through these interactions and within broader discourse around chronic illness.

Is this a relatively new area of study or are there other pieces of research dealing with PoTS and emotional well-being and coping strategies?

I referenced a lot of other research on PoTS when putting together my project. A lot of other research focused on the physical symptoms of PoTS and treatment (pharmacological routes or exercise management programmes). There was research that looked at the delay in diagnosis for PoTS and possible causes for PoTS (eg Covid 19). I did not come across a huge amount of research dealing with PoTS and emotional well-being. It was certainly mentioned in most studies, just not the focus of the research.

I did find a few that focused on the mental strain of living with PoTS e.g. Knoop, I., & Dunwoody, L. (2023). “You’re always fighting”: the lived experience of people with postural orthostatic tachycardia syndrome (POTS). Disability and rehabilitation, 45(10), 1629-1635.

How did you conduct the study?

After getting ethical approval by my university, I contacted PoTS UK to ask for help recruiting my participants. They sent me an ethics form to fill out and after approving this, advertised my study across their social media. Quite a few people of different ages expressed an interest in being involved with my study. My research, however, was aiming to explore 18–25-year-old women with an official PoTS diagnosis. In order to stick to that I ended up with 7 participants that fit the criteria for my study. I conducted semi-structured interviews over Teams using an interview schedule focusing on key areas such as:

• pre-diagnosis
• diagnosis
• impact
• medical support
• social support
• self-support

I then analysed each interview using Critical Discursive Psychology (CDP), focusing on social constructionism throughout.

How did you draw on your own experience as a young woman with PoTS to ensure your questions/process of interviewing were sensitive and made your subjects feel able to open up?

At the start of my interviews, I made sure to let my participants know that I also had PoTS. I believe this made the women I spoke to feel a lot more comfortable talking about their experiences. There was a sense of understanding between me, as the interviewer, and the participant. The open questions, and the fact that I could relate to areas of their experiences, allowed more space for conversation. This helped me to gain more detailed data.

I was able to interpret and analyse the data that I collected in a way that I believe a researcher without the lived experience of this condition would have difficulty doing.

What conclusions did you draw from your study?

Key ‘repertoires’ were identified in this study such as:

• hidden illness identity
• self-advocacy – ‘I know my body best’
• resilience – success despite challenge.

Hidden illness identity was demonstrated through the idea that women have to work harder to ‘prove’ the legitimacy of their condition to ensure medical and social support, due to them appearing ‘healthy’. Support was constructed through the need to improve awareness and knowledge of POTS. This requires women to advocate for themselves a lot of the time. This led onto the next repertoire of self-advocacy – ‘I know my body best’. This repertoire challenged medical expertise, instead highlighting the importance of personal experience, building support through autonomous healthcare navigation and self-research. However, this puts a burden on patients, constructing support as an exhausting and frustrating process. Resilience was required by all participants to get through this process. The repertoire of the resilient patient – success despite challenge, demonstrated how women with POTS positioned themselves as strong and adaptable. This also highlighted tensions. Sometimes pushing through symptoms can result in over exhaustion and can trigger the condition further. Support was constructed here by redefining obstacles as successes and using internal drive and motivation to reinforce personal strength and accomplishment.

Did your study bring out aspects of young women’s lives that you believe therapists should know about in order to better offer support?

A key finding in my research was the significant impact of age and gender-related biases within healthcare experiences. Participants described feeling that they were often overlooked because they were young women. Symptoms would be attributed to puberty, hormones, anxiety or simply ‘being a teenage girl growing up’. This appeared to contribute to feelings of frustration and self-doubt before receiving a diagnosis. Many were left feeling they had to justify their symptoms in order to be taken seriously. Therapists should be aware that young women with PoTS and other invisible conditions may come into sessions having previously experienced invalidation and disbelief within the medical community. This may impact trust and confidence in seeking support during initial stages.

What key aspects do you think therapists should explore and take into account?

I think it is important that therapists understand PoTS and other chronic conditions as a whole. Taking into account the entire process, from symptom onset, to diagnosis, to post-diagnosis and navigating managing the condition. There is definitely a lack of knowledge among medical professional about PoTS. Equally, there is a lack of understanding about the emotional strain that can come with living with a chronic condition, especially an ‘invisible’ one.

My study highlighted how societal assumptions that young people are ‘supposed to be healthy’ can create additional emotional strain for individuals living with a hidden chronic illness. Participants often described having to advocate for themselves. They were forced to adopt an ‘I know my body best’ approach to challenge medical authority and legitimise their experiences.

Many individuals find it difficult to portray the ongoing challenges of living with conditions like this as they appear ‘healthy’. It was recognised by one of my participants that people only notice PoTS when symptoms are at their worst. This indicates a disregard from others when the condition isn’t physically obvious. Therapists should recognise the importance of validating lived experience and understanding the emotional strain associated with constantly needing to prove the legitimacy of symptoms.

Are there particular questions you think therapists could ask, or ways they could ask them, that would be helpful?

Therapists should aim to ask open, validating questions that allow individuals to describe their experiences in their own words. Everyone’s experiences with conditions like these are different. Therapists should not assume that clients have experienced certain things because other people have. There is a huge link between physical and mental health and I think it is important to factor these both in when discussing experiences. Asking questions like: ‘Have you ever felt pressure to minimise or push through your symptoms’ addresses the emotional impact of living with a hidden chronic illness and the pressure to appear ‘healthy’. Pushing yourself through symptoms can not only be mentally draining but can make physical symptoms a lot worse. That, in turn, worsens mental health. It’s a cycle. So considering physical health as well when exploring emotional wellbeing I think it very important.

Making sure to offer non-judgmental and validating communication is essential. Therapists should create a space where the legitimacy of symptoms is not discussed, but instead the experience as a whole is acknowledged and understood.