Lilianna Investigates How Women with PoTS Navigate Life and Build Support

Lilianna Mint is a Psychology graduate and has PoTS. For her undergraduate research project, she explored how women with PoTS navigate support for the condition and recruited participants with the help of PoTS UK who advertised her study on social media. Lilianna received a First-class grade for this project and was also awarded a Citation of Excellence by the BPS.

She is very interested in health research, particularly chronic illness and women’s health.

Below, Lilianna shares the finding from her research and we suspect many of the findings will resonate with lots of our community.

My Project

During my final year of university studying Psychology, I carried out a research project exploring how women with PoTS navigate and build support for the condition.

Living with PoTS myself, I was interested in hearing the experiences of other women and found it incredibly validating and rewarding connecting with my participants. There is such a comfort in speaking to people who understand.

What was the project about?

• My research aimed to better understand how women with PoTS talk about support, how they access it and challenges they face.
• I was particularly interested in how the condition affects daily life, wellbeing and interactions with healthcare professionals.

How was the research carried out?

• With the help of PoTS UK advertising my research across social media, I recruited women suitable for my study (between the ages of 18 and 25 years with a PoTS diagnosis).
• I conducted 7 online interviews via Teams to collect my data where I covered key topics such as: pre-diagnosis, diagnosis, impact on everyday life, medical and social support and self-support.

What were the key findings?

Analysis of the interviews highlighted three key patterns throughout:

‘Hidden illness identity’

• One of the strongest themes was the experience of living with a hidden or ‘invisible’ illness.
• Many participants struggled with being understood and ‘seen’ due to appearing healthy.
• This led to medical dismissal in many cases and feeling like they are seen as an ‘overreacting patient’ which captures the challenges that many young women with PoTS face when seeking medical advice.
• Young women with PoTS, therefore, often feel they must push medical professionals to be taken more seriously and must advocate for themselves.

‘Self-advocacy – ‘I know my body best’

• Participants felt they had to take matters into their own hands after being frequently dismissed by the healthcare system.
• There was an emphasis on being knowledgeable on PoTS and how this can benefit the way in which the condition is managed.
• Self-management becomes important to prioritise health and establishes women as experts in their own care.
• However, this also highlights the failures of the healthcare system in providing adequate support for PoTS.
• Self-advocacy does not come easily and requires determination and resilience from patients.

‘The resilient patient – success despite challenge’

• Women reflected on how they were able to overcome challenges, succeed and take care of their health despite having PoTS.
• A sense of pride and compassion came through that validated their experiences as well as my own.
• Resilience was built through a sense of connectedness with others that could relate to them – through support networks in the absence of medical support.
• This theme changes the focus of what PoTS limits, to what can still be achieved.

Conclusion

Overall, the findings highlight that support for people with PoTS is not always straightforward and often requires significant personal effort. Improving awareness and understanding of PoTS among healthcare professionals is essential to reduce this pressure on patients. Listening to and validating patients’ experiences can lead to better support, improved care and a more positive experience for those living with the condition.