“You’re always fighting”: the lived experience of people with postural orthostatic tachycardia syndrome (POTS)

Abstract

Purpose

Postural orthostatic tachycardia syndrome (POTS) is a debilitating and poorly understood disorder of the autonomic nervous system with many different causes, mostly seen in females of child-bearing age. This study used an illness representation framework to explore the lived experience of those living with a medical diagnosis of POTS.

Materials and methods

Six individuals (aged 20–42) were recruited from two POTS online support groups. Individual semi-structured interviews were used to explore the five illness representations of identity, cause, consequences, timelines, and cure/controllability. Data were analysed using interpretative phenomenological analysis (IPA).

Results

Lived experiences were characterised by four overarching themes: “Fighting to be heard”, “My individual self-management toolbox”, “A mixed bag of emotions”, and “I’m expensive in so many ways”.

Conclusions

Individuals faced considerable physical, psychosocial and financial challenges and felt underserved by healthcare and support provision. Early diagnosis and recognition of symptoms, along with education on self-management may help reduce associated mental health burdens. A biopsychosocial conceptualisation of this condition may help lead to a more integrated approach to care.

Implications for rehabilitation

• Living with POTS impacts on all aspects of life, including work, family, and social relationships/activities, and has financial burdens.

• Family doctors need education on the existence of POTS and the importance of providing biopsychosocial support services.

• More timely diagnosis of POTS is required, with access to specialists who understand the burden of living with POTS.

Keywords:

• POTS
• IPA
• self-management
• Leventhal
• misdiagnosis
• postural orthostatic tachycardia syndrome

Introduction

Postural orthostatic tachycardia syndrome (POTS) is a disorder of the autonomic nervous system with many possible causes and symptoms. These can include a sustained rise in heart rate upon standing, palpitations, dizziness, fatigue, migraines, fainting, digestive and bladder dysfunction, all of which can have negative impacts on quality of life (QoL) [1,2]. Age at diagnosis, is typically between 15 and 35 years, with a preponderance of females (5:1); many people are misdiagnosed with anxiety and commonly face a diagnostic delay of 2 years [3]. Due to complex presentation, diagnosis and management of POTS can often fall between specialities. In developed countries, the prevalence of POTS has been estimated to be between 0.2% and 1.0%, but data are largely unavailable outside of the USA [4]. The prognosis for people with the condition is variable, but at least a quarter of those diagnosed are unable to work, with QoL and functioning significantly affected [5].

Currently, there is no approved or licensed pharmacological treatment for POTS [5], however, a purely biomedical approach unlikely to be sufficient; therapy consists of a combined approach of diet and lifestyle changes and judicious use of medications [1]. A 2018 systematic review and meta-analysis of the efficacy of therapies for POTS concluded that the evidence base to guide optimal management of patients was extremely limited [6], a more recent review suggested that a combination of pharmacological and non-pharmacological approaches are required [7]. However, receipt of a correct diagnosis is essential and can lead to improvements in QoL [8].

Current self-management advice includes exercise training, volume loading (through increased water and salt consumption), and lifestyle adaptations, such as dietary modifications, avoidance of triggers, counter-manoeuvres, pacing, and bed-tilting. It should be noted that such advice is largely based on patient experience and expert opinion [9], rather than being evidence-based.

Psychologically, patients face challenges congruent with chronic illness, especially early on in adjusting to the condition, with many experiencing or going on to exhibit mild to moderate depressive and anxiety disorder symptoms [10]. The latter is of importance, as even low levels of anxiety can exacerbate symptoms. In addition, some patients experience sleep disturbances, hence an integrated treatment approach, which encompasses psychosocial and behavioural factors is likely to facilitate adjustment and possibly improved clinical outcomes of POTS [10]. However, to date no theoretically driven approach has been advocated.

Leventhal's common-sense model (CSM) [11] of illness representations, proposes that illness perceptions directly influence coping strategies, which in turn influence outcomes. Receiving a diagnosis or an illness label is a key part of illness representations, which influences how people make sense of their symptoms and may guide any coping actions [12]. Hence, how an individual thinks about an illness can influence coping behaviours and illness adjustment. For example, in a study of adults with sickle cell disease, negative thinking was associated with poorer outcomes and continued adjustment difficulties [13]. Similarly, misdiagnosis and diagnostic delays can have negative consequences, which may lead to increases in psychosocial impairment [14]. This highlights the importance of understanding patients’ illness representations, trajectory to diagnosis and treatment experiences, however to date there has been very limited research in this area, especially in developing theory-based interventions that may help to reduce symptom severity and improve quality of life in POTS.

In order to develop any intervention, there is a need to explore the subjective perceptions and interpretations people have about their condition, which is currently lacking in relation to POTS. The current study used the CSM [11] as a framework to explore the lived experience of POTS in individuals who self-reported that they were medically diagnosed with the condition. The CSM consists of five illness representations: Identity (associated with the symptoms of the condition); Cause (the individual’s understanding of how they got the condition); Consequences (the impact of the condition on physical, psychological, social, and financial aspects of life); Timeline (how long the condition will last and whether it is acute or chronic); Cure/controllability (what the individual or healthcare professionals can do to cure or control symptoms).

Methods

Design and overall methodological approach

Researchers adopted the ontological stance of there being multiple realities, this acknowledged that the nature of reality was subjective to participants, thus experienced in different ways. In using a constructivist epistemology, researchers constructed knowledge and utilised the double hermeneutic, typical of interpretative phenomenological analysis (IPA). Hence, participants’ experiences, interpretations and meanings of personal and social illness representations of POTS were interpreted by researchers during data analysis [15,16].

Data collection

Ethical approval was sought and received from a university ethical committee and permission to advertise the study was granted by administrators of two “closed” POTS Facebook groups. Online interviews (via Skype or Zoom) were conducted and recorded by the first author, who also took field notes. Interviews lasted between 33 and 60 min (average of 43 min). Earll [17] reported that self-regulation was a useful starting point for understanding chronic illnesses, hence a series of questions derived from previous literature on chronic illness [18] were used to stimulate and keep the discussion going, whilst permitting flexibility with regard to the content being discussed. Questions centred around and were adapted for POTS using the five aspects of illness representations based on the CSM [11], which explored identity, timeline, cause, control/cure, and consequences (Table 1).

Table 1. Topic guide for interviews.

1. Tell me a bit about your POTs

Prompts: Illness identify and timeline

2. Do you think there was any one thing that caused you to develop POTS?

Prompts: Causal beliefs

3. Has POTS had an impact on your everyday life?

Prompts: Consequences

4. What support if any do you think would be helpful for people with POTS?

Prompts: Control and curability

Finally, is there anything that we have not discussed about your POTS that you would like to share with me?

Participants and recruitment

Eligibility criteria included being an English speaker, over 18 years of age with a self-reported medically confirmed diagnosis of POTS and access to Skype or Zoom. Eight people responded to research invitations, but two were ineligible to take part, as they contacted the researcher after data collection had ended. Six participants provided informed written consent, of these, five described themselves as female and one identified as non-binary. Ages ranged from 20 to 42 years (mean: 31), with one participant from Canada, three from the US, and two from the Netherlands. The median duration of POTS symptoms at the time of interview was 11 years, but two participants recalled having symptoms for the most of their lives. Formal diagnosis had taken 1–14 years, with a median of 4 years (Table 2).

Table 2. Participant demographic information.

			Years since		Occupational status
Pseudonym	Country	Age	First symptoms^a	Diagnosis	status
Janet	Canada	32	Most of life	4	Self employed
Anna	USA	32	3	1	Employed
Dani	USA	20	Most of life	6	Unable to work
Lynette	USA	31	13	1	PhD researcher
Margot	Netherlands	42	19	14	Unable to work
Sophie	Netherlands	31	13	4	Self employed

^a Number of years living with symptoms at time of interview.

Analysis technique

An inductive approach was used, each interview was transcribed verbatim and analysed using IPA before moving to the next. This involved a six-stage process (1) reading and re-reading transcripts; (2) initial noting and open coding; (3) developing emergent themes; (4) searching for connections across emergent themes; (5) moving to the next interview; (6) looking for patterns across cases [15]. The analytical process was completed through a process of integrating identified themes across transcripts, and clustering together significant statements that captured common themes of participants’ experiences of living with POTS. In accordance with IPA’s idiographic focus, all themes were explored regardless of whether experiences were common to all participants or unique to a single participant. Where possible, a balanced overview was given for each theme with the range of experiences for each participant, including when these contrasted. Finally, personal reflexive practice and transparency from the lead researcher about having a POTS diagnosis ensured that results were grounded within data.

Establishing trustworthiness

In accordance with existing literature, a number of steps were taken to address the issue of trustworthiness in qualitative research [19,20]. These included providing details of the researcher’s background of being diagnosed with POTS and her approach to the study. In particular, strategies to establish confirmability of the study findings, included credibility of findings [21], through member checking of themes; participants were given the opportunity to comment on whether researchers’ interpretation of their data was a true reflection of their meanings. To aid transferability of findings, a “thick description” of participants and the overall research processes was provided. Dependability was addressed in terms of the ontological and epistemological stance of the researcher, along with clear documentation of analysis, which included, checking draft analyses, discussion and feedback with the second author, who was a health psychologist and experienced qualitative researcher. An audit trail was established that ensured that correct IPA data analytic procedures were employed. Additionally, when presenting data to support interpretations, quotations from participants were used to provide a balanced representations and interpretations of themes.

Results

Analysis revealed four superordinate themes, which were salient to the experiences of all participants, they were labelled: “fighting to be heard”, “my individual self-management toolbox”, “a mixed bag of emotions”, and “I’m expensive in so many ways”. Illustrative participant quotations were used to validate themes and pseudonyms used to protect participants’ identities.

Fighting to be heard

The importance of being heard and believed was a central aspect of living with POTS, this was complicated by misdiagnosis, which led to anger, feelings of being discredited and “fighting” for a diagnosis. Whilst a theme on its own, the feature of “fighting to be heard”, was palpable in some sense across the other themes. Interactions with HCPs were not always straightforward, involved a battle to find the right specialist and took months, or even years. There was a palpable sense of this process being energy draining, part of the ongoing POTS struggle, not just with symptoms, but also with the healthcare system in general.

My General Practitioner will be like, “oh I don’t know anything about this,” … Like who do I go to and especially with the way that like health care is set up where you kind of have to know what specialist you have to see. (Lynette)

It was apparent that it would have been be helpful to have had one HCP in charge, to coordinate overall care, thus reducing the need to engage in the continued fight to be heard.

…almost like a Captain of it [referring to POTS investigations and treatment], to be kind of like okay, we got this, we’ll send you here and like, so you don’t have to champion all the time on yourself. That’s also draining, to be like the one of like I’m going to keep pushing through. (Lynette)

There was a tangible need for acceptance, understanding and information, along with the necessity for others to comprehend symptom burden and questionable prognosis in searching for help in living with POTS. This was not just for those with POTS, but also for healthcare professionals, family, friends, employers, and the general public.

The thing we need most is just information, being out there and people to understand… that POTS can be caused by many, many things… some people have very mild symptoms, some people have very severe symptoms… to have that recognition and have that acceptance. (Dani)

Participants voiced that some HCPs had a poor understanding of POTS, but interestingly it seemed that it was possible for HCPs to be helpful without necessarily needing to be an expert. This was evident from how Janet felt, despite consultations not being perfect, she valued her cardiologist’s willingness to embark on a journey with her, learning together and this “partnership” approach was helpful to engender a feeling of support.

I have an amazing sarcastic Cardiologist… he’s not a specialist by any means, I don’t think he’s ever had a POTS patient before… So, we’re kind of learning together. (Janet)

This was not a common experience, Dani had difficulty in receiving co-ordinated care and felt she was treated as a series of symptoms rather than a person managing the multi-faceted nature of POTS. Both Dani and Margot described confusion and dissatisfaction with their interactions and experiences of healthcare.

She’s [doctor] referring me out to these different doctors for these different symptoms and not all the doctors want to work together, not all the doctors are taking me seriously or listening to what I have to say. (Dani)

It’s sometimes like they’re [referring to doctors] in ivory towers and if you have done a lot of examinations and physical[s], then the other Doctor wants to do all over again because he wants to form his own opinion. Then you get two different outcomes and it confuses you. (Margot)

Most participants (N = 5) had at some point doubted the legitimacy of their own condition, but this was in response to HCP interactions and/or family members insinuation that being ill was their choice. Dani’s family doubted the existence of POTS and Anna explained how her POTS symptoms were attributed to her anxiety and even illegal substance abuse.

My grandmother does not [believe me], she thinks I’m faking it, she thinks I’m making it so much worse than it is. And that I just want to be lazy. (Dani)

I went to the ER, they asked me if I smoked marijuana and used other illegal drugs… So, it is pretty traumatic. (Anna)

Not being believed was a substantial challenge, with physical symptoms often dismissed as being psychosomatic. The indifferent attitudes of HCPs impacted negatively on Anna’s emotional wellbeing, whilst Lynette and Margot shared their frustrations about dismissal and misattribution of physical symptoms and how this caused self-doubt. Such interactions resulted in participants battling with their internal thoughts regarding the validity of their symptoms, but being given a diagnosis of POTS did help to reduce this dissonance.

Participants also had to fight against misguided advice, which had the potential to worsen physical symptoms. Dani explained how she was told to carry on as normal, to ignore her symptoms, but this resulted in a relapse.

Oh you’ll just have to eat salt, you have to drink water you have to exercise, and your symptoms will basically go away. Well that led into me pushing myself way too hard… and part of the reason why I wound up the way I did. (Dani)

This was also echoed by Margot, who highlighted the importance of heeding symptoms as a warning sign and not to overstep their limitations based on HCP advice.

If you have a very enthusiastic physical therapist that says come on, you can do it, then you might push your boundaries and get a relapse the next day. (Margot)

Participants felt they were fighting POTS on their own terms, they had to discern what was helpful for them and needed to advocate for their own “bespoke” care and self-treatment.

My individual self-management toolbox

Currently, there is no cure, approved or licensed treatment for POTS. Participants referred to non-pharmacological treatments, such as exercise and salt loading, coping mechanisms, support, and lifestyle adjustments, as the “toolbox” from which they drew their respective strategies to help with, and manage, specific aspects of the condition. Many of these were particular to individual needs, but such decision making caused uncertainty and fear of relapse. Participants went through a learning process in order to trust their own self-management strategies. Exercise was viewed as a useful management tool (N = 4), but not for everyone.

I think it [exercise] could be helpful, but then the people you work with have to understand what POTS is and exercise intolerance is… So, I’m really scared, but I want to try it. (Margot)

Psychological support was regarded as potentially helpful, but the emphasis was on having access to a therapist who could consider the psychosocial impact of living with a physical illness. This was initially exemplified by Dani and later by Sophie who revealed that in the Netherlands, there was a lack of mental health support to help people deal with physical health conditions. Thus, highlighting geographical disparity in healthcare practices, available treatments and support for people with chronic physical health conditions, such as POTs.

It also definitely helps to have like a counsellor or a therapist or someone behind you that understands chronic illness…. (Dani)

In the Netherlands for example, you can have mental [health] support when you are depressed, but not when you have a chronic illness…because then it’s not a diagnosis in their book and it will not be covered. (Sophie)

In an attempt gain self-management information, most participants had made use of online support groups; however, these tended to reinforce negativity and illness behaviours and were viewed as having the potential to do more harm than good, as emphasised by Janet and Lynette:

I don’t find that they’re [support groups] very helpful. I find that they’re very negative and they’re just looking for people to reinforce their negativity. (Janet)

They don’t really promote the positive claiming of like coming to the acceptance points of POTS. … it just feels so stuck on those like forums and stuff that it just, it doesn’t feel productive for me. (Lynette)

Knowing your own bodily needs and “emergency treatment” was an important aspect of the self-management toolkit, which included salt, water, compression stockings and in some cases, IV fluids.

The management side is huge … I think being better equipped…like for this, do this; for this, do this. (Dani)

For me it’s like salts and water and like some days there’s compression stockings. I do IVs from time to time that kind of thing…. (Janet)

One of the most important aspects of the self-management toolkit seemed to be planning for events and back-up plans, along with significant others being flexible in changing plans in accordance with their symptoms. Both Janet and Dani provided examples of adapting plans at short notice, they talked about having little room for spontaneity, thus making impossible to plan ahead without their “toolkit” being in place:

When we do the shows, I make sure that I always have some sort of an understudy or safe plan in case you know I faint on stage or something. (Janet)

Travelling is difficult, holidays are difficult, if I want to do anything… I need plan A, plan B, plan C, plan D, those kind of things, if I can’t do something or if, you know if something comes up. (Dani)

Adapting to living with POTS, and finding a “work around” was essential to achieve the goals associated with everyday activities. Janet talked about adapting and doing things differently to others, whereas Anna had disclosed her POTS to supervisors in order to justify time off. Implicit within this was the concern about how others would view taking time off and making people aware of individual limitations imposed by living with POTS, thus linking back to the previous theme of “fighting” to be heard and for their “hidden” illness to be accepted. Flexibility in work and study, and understanding from employers and supervisors also helped participants to continue their vocations. However, there seemed to be a struggle between wanting to disclose their POTS and the worry about being judged in terms of the legitimacy of their condition.

I ended up changing supervisors and I was a lot more comfortable, if I’m having a flare up, you know, she’s like okay, that’s okay and she just doesn’t really question it…. (Anna)

Knowing their own boundaries was a central tenet of the “self-management toolkit”, along with being guided by symptoms in order to avoid “pay-back” later. However, Dani, Margot and Sophie explained how trying to keep going and pushing boundaries had negative consequences, and seemed to be very much trial and error.

I was just pushing through, I was doing whatever I could to keep going and it just made things worse… the next several days I would be good for nothing. (Dani)

Don’t push your boundaries, because if you go far over like I did a couple of times you might end up worse. (Margot)

Awareness, understanding your body and also for me, I have learnt to listen to my body, and I know my body very well. (Sophie)

In summary, the self-management toolbox contained a broad variety of “tools”; these ranged from understanding their own body, pacing and symptom management, having a therapist who understood the psychosocial burden of living with a chronic health condition and informing others of their limitations.

A mixed bag of emotions

It was apparent that living with POTS was extremely challenging; however, Janet and Lynette referred to feeling lucky. They focused on what they considered to be positive outcomes, which included devolved responsibility and trust in others to undertake important tasks. This included the notion of adversarial growth in relation to changing identity, acceptance of living with and managing POTS.

Find ways of adapting [was important] and I found it’s actually made my business better … I refused to let go of control… and then I got sick, so because I trusted other people to do shows and take over reasonable things …the business actually tripled in size. (Janet)

I found it to be like a positive identity moment of like okay, you know this is me, cool, got it… There’s positivity in claiming an identity and getting to like expand and find your identity and like your limits within it. (Lynette)

Janet and Anna acknowledged the burden of POTS on others, they explained how they felt fortunate in how they had been treated by other people and partners. Lynette referred to the continued support from her spouse, despite him not necessarily having “signed up” for living with, and caring for a person with a chronic illness. Participants seemed to be grateful that partners and some close friends had not questioned the legitimacy of their illness, this was valued, as their own self-belief had occasionally faltered when faced with years of symptoms and delays in being given a name for those symptoms.

I’ve been really, really blessed in that regard that he’s [my husband] been so understanding. (Anna)

I’m really lucky like, my spouse is incredibly like supportive… [It] kind of shifts our dynamic in our marriage of like it’s almost like a patient, too much of a patient, care giver. And I know he just does it because he cares about me… it’s not something he necessarily signed up for in this relationship. (Lynette)

However, not all of Lynette’s friends were as supportive, she described experiencing feelings of guilt, of having let people down, losing friends and of not meeting people’s expectations. This viewed was shared by Dani, who described “beating herself up” for not being able to make prior arrangements.

I’ve been living with all this for last like over 10 years now, I’ve lost a lot of friends along the way of people that just don’t want to deal with it or like oh you’re just always sick you know whatever that looks like to them. (Lynette)

None of the participants expected to be cured or symptom-free, but Anna explained how she hoped for things to become easier in terms of day to day improvements, advocating for better management and, ideally a cure being discovered someday. However, this was in contrast to Dani who felt that a cure was a long way off and of little consequence to her current situation. This resigned outlook was shared by Margo, despite having been told that POTS may possibly get better over time, she held a fatalistic attitude and limited hope of ever fully recovering, coupled with a prevailing sense of uncertainty about how her symptoms may worsen. The range of emotions experienced by participants with regards to their POTS prognosis and impact included constantly distressing symptoms and the emotional strain of being a burden to people around them. Despite there being a battle to come to terms with the possibility of having to live with the uncertainty of POTS, for some hope and adversarial growth prevailed.

‘I’m expensive in so many ways’

The final theme viewed living with POTS as being expensive in terms of reliance on others, being a burden, not only socially and emotionally, but also financially. In the US in particular, the expense of healthcare was an issue, loss of earnings and welfare benefits (or lack of) caused additional stress to some participants.

My POTS kind of started when I was pretty much engaged to my husband, so we were a two-income household. So, we’ve been able to manage, but it is a huge expense… But, the medical bills, it is a big stressor, because… the bills are high. (Anna)

In addition, there were also emotional and social costs, with reduced participation in work, social activities, and relationships. Participants not only coped with debilitating symptoms, but also the grief of lost friendships, previously enjoyed activities and to a certain extent, loss of independence. For Dani, there was sense of loss associated with her career, as POTS symptom exacerbations resulted in not being able to continue at college.

I attempted to go to college… I was so stressed…I thought about doing something [a course] online but at the moment with the [POTS] symptoms that I have, being so extreme… I’m hoping eventually in my life I can work, and I can finish college, but for the time being there’s nothing. (Dani)

Living with POTS came at the expense of participants’ working lives, education, relationships, and financial situations.

Discussion

The current study explored the lived experience of POTS and used questions framed around the CSM [11], this resulted in four superordinate themes,: “Fighting to be heard”, “My individual self-management toolbox”, “A mixed bag of emotions”, and “I’m expensive in so many ways”. Data provided rich insights into how participants understood and made sense of their symptoms, diagnosis, coping with the long-term consequences and nature of the condition, whilst searching for a sense of control and uncertainty about a cure.

All participants expressed the importance of getting a diagnosis and most experienced some diagnostic delay or misdiagnosis, mainly as mental health conditions, such as anxiety, or in Anna’s case substance abuse. These findings are congruent with existing literature on POTS, with one of the most common misdiagnoses being anxiety [3]. It is acknowledged that there may be comorbidity or overlap with psychiatric conditions, but it is unclear whether the latter are impacted by the stressful nature of the condition and this is in keeping with other chronic illnesses that are considered to be “syndromes”, such as fibromyalgia [22] and CFS [23]. In the current study, time to diagnosis ranged from 1 to 14 years, with a median of 4 years, which is somewhat higher than the 1.82 years reported a US study [3]. These aspects of diagnosis and delay are of importance, as previous research indicates that they can have negative consequences for QoL, and depression [4,23].

The diagnosis or illness label was a key part of participants’ illness representations, which influenced how they made sense of their symptoms and guided their coping strategies [12]. When symptoms first started to appear, participants struggled with having to “fight to be heard” in order to get a diagnosis. This involved a variety of referrals to HCPs, multiple tests, disagreements and conflicting information between doctors and disparity in terms of diagnosis, which is similar to the experiences of people with CFS [23]. However, the nature of the “fight” seemed to transcend all themes to various degrees, as exemplified in negotiating with HCPs, navigating the healthcare system, information seeking, legitimacy of illness and own dissonance regarding self-belief about symptoms.

Making sense of symptoms was very individualistic and a diagnosis did not always lead to instantly reliable management strategies. Similar to illnesses such as CFS [23] and MS [24], there was an emphasis on the need to “get to know” their own symptoms, some of which were difficult to control. Determining what worked for them was highlighted by all, but tinged with a strong sense of uncertainty. Slowly, as participants sought out information and became more familiar with their own limitations, they started to develop a “mixed bag of self-management tools”, however, such “tools” and information were not always forthcoming from HCPs. Even when a diagnosis of POTS was made, there appeared to be much misinformation about the curability of POTS and there was a sense that most HCPs, especially family doctors, had little training or information on the condition, with POTS being considered, as something “you will grow out” of. Participants relayed that the advice provided to “push though” their symptoms, was unhelpful at best, and damaging at worst. Rather than simply pushing through symptoms, participants engaged in trial and error to get to know and understand their body, symptoms and all felt that a this was a more sustainable strategy than those proffered by HCPs. The use of problem focused approaches have been deemed as adaptive in other chronic conditions [25] and the need to become an “expert” in the managing chronic illnesses is not new, as it has previously been reported in relation to CFS [23]. Related to this, participants voiced how they had coped with demoralising and counterproductive HCP interactions and the negativity often found when seeking peer support in online forums. In addition, self-dissonance was evident in the struggle with decisions to disclose their diagnosis of POTS and concern about how others would view the legitimacy of their condition. The ability to exert some limited control over symptoms appeared to engender a feeling of well-being and is consistent with previous research into physical illness [26], but when self-management did not work or work as well as expected, a sense of helplessness, anxiety, and uncertainty about prognosis returned, which is in keeping with previous research into the psychological correlates of POTS [27,28].

In relation to participants’ understanding of the causes of POTS, most talked about a preceding event that caused a sudden exacerbation or triggering of full-blown POTS symptoms, although many had already experienced some symptoms prior to that. Two participants felt that past trauma and or lifestyle choices may have contributed towards the development of the condition and most saw these as contributors to, rather than causes of POTS, illustrating the importance of appraisal, coping and adjustment in chronic illness [29].

It was clear that POTS pervaded all aspects of participants’ physical, psychological, social, and financial everyday lives; however, this was not always negatively framed. Participants expressed hope for the future in terms of treatments, but felt that hoping for a cure was unrealistic. Such findings are congruent with other chronic conditions such as CFS and MS, in which seeking a better future [29], along with acceptance and shared understanding were important [30]. Beliefs in personal control generally appear to be adaptive [26], suggesting that having a sense of control may aid adjustment to physical illness. Indeed, for two participants, POTS had permitted adversarial growth insofar that had given them the opportunity to make positive changes to work situations. However, there was considerable variability in levels of functioning between participants, with some being able to work full-time whilst others were unable to work at all, which is in line with previous findings that POTS symptoms can have a considerable impact on working lives [1,31].

In addition, to having to cope with the symptoms, implications and management of this condition, dealing with lack of understanding and disbelief clearly had an emotional impact on participants. Social activities, such as outings required preplanning, and had the potential to be abandoned at short notice. For one participant, the battle to manage symptoms came at the expense of losing friends, whilst others relayed a sense of guilt in having let people down and of not having met others’ expectations. However, control and flexibility over work or social activities permitted better planning to suit own needs, which included being adaptable to any changes at short notice, along with resourcefulness and resilience.

Limitations

The lead researcher had a diagnosis of POTS, so there was a risk of researcher bias, to counter this a reflexive diary was maintained after each interview and during the analytic process, with results audited by a second researcher. Whilst participants were purposefully recruited, they were from different geographical areas and healthcare systems, despite this there were commonalties amongst participant accounts, but it is unclear if the findings are globally representative. The sample size of six participants may be considered small, but this is consistent with other IPA studies [15,16]. No new information was forthcoming at the end of interview six, thus it seems that data saturation had been reached, but only in relation to illness representations. The authors acknowledge that the “illness representations lens” has not considered other aspects of the lived experience of POTS, such as a fine-grained exploration of patients’ diagnostic journeys, the types of medical specialists who established their POTS diagnosis and no information was specifically sought regarding commonly prescribed medications for POTS symptoms, these are acknowledged as a limitations within the current study. Hence, further research in this area is warranted, as such information may of use to family doctors and patients alike.

Conclusions

Taking a problem focused approach in respect of constantly fighting to be heard required persistence, researching treatment options and standing up to or ignoring misguided advice. Participants in the current study all attempted to varying degrees to retain control over their own care, but not everyone who receives a diagnosis of POTS is likely to react in the same way. The findings from the current study indicate the need for HCPs to take a biopsychosocial approach to listening to and addressing the needs of patients with POTS. There is a likely role for psychological therapy in helping control adjustment-related issues [10], this is of importance as previous research has shown that poor adjustment to chronic illness can lead to depression and anxiety as well as functional decline [32]. However, care should be taken to avoid a sole focus on less adaptive emotion focused coping [25]. As emphasised by participants, psychological support needs to be tailored to dealing with physical health conditions, in respect of supporting the adjustment process. Future research is required to explore the informational needs of patients, families, and HCPs, along with the impact of POTS on family members. The current study has just presented a snap shot of the lived experience of POTS, in order to gain further insights into the illness representations of this population, consideration should be given to conducting a large scale survey making use of the revised Illness Perceptions Questionnaire [32] to help to determine salient aspects of illness which may be amenable in the development of behavioural interventions for this patient population.

Disclosure statement

No conflict of interest to declare.

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.