A qualitative exploration of illness-related experiences, emotions, and coping among adults with postural orthostatic tachycardia syndrome (POTS)

Abstract

Postural orthostatic tachycardia syndrome (POTS) is a relatively common, burdensome condition of the autonomic nervous system characterized by orthostatic intolerance. This paper presents a subset of findings from a qualitative study investigating the lived experience and perspectives of adults with POTS. Twenty-nine individuals participated in a series of focus groups. We present a conceptual model which summarizes themes related to illness-related experiences, emotional reactions, and coping strategies, and distinguishes how these vary from pre- to post-diagnosis. Our findings emphasize the myriad challenges of living with a condition with diffuse and wide-ranging symptoms, significant quality of life impacts, and limited treatment options, as well as the role of active coping strategies in facing these challenges and their emotional impacts. Additionally, we summarize themes of patient-derived suggestions for improvement in care, which highlight the importance of compassionate, patient-centered care and mental health care to support adaptive coping.

Background

Postural orthostatic tachycardia syndrome (POTS) is the most common form of autonomic dysfunction and is characterized by orthostatic intolerance evidenced by a marked and sustained rise in heart rate upon standing. Symptoms are wide-ranging and commonly include lightheadedness, dizziness, palpitations, headache, gastrointestinal disturbances, fatigue, and brain fog (Raj et al., 2022). Apart from a change in posture, common symptom triggers include food ingestion, morning hours, showering, caffeine, dehydration, heat exposure, and exercise (Goodman, 2018).

A vast majority of those diagnosed are Caucasian females between 15 and 50 (Goodman, 2018). Prior to the COVID-19 pandemic, prevalence estimates ranged from 0.1%–1% of the population (Raj et al., 2022). The prevalence is thought to have increased since as autonomic dysfunction, including POTS, is one of the most reported post-acute sequelae of COVID-19, affecting up to half of those with long COVID (Larsen et al., 2022; Mallick et al., 2023).

The pathophysiology of POTS is not completely understood. It is suspected there are multiple subtypes and varied etiologies, including blood volume, neuropathic, and autoimmune abnormalities (Arnold et al., 2018). In the context of this uncertainty, some have questioned whether POTS is psychogenic in origin (i.e., a manifestation of panic disorder, anxiety, and/or somatization), however, research has strongly supported the position that the characteristic symptoms of orthostatic intolerance are physiologically driven (Khurana, 2014; Masuki et al., 2007). Regardless, in a recent large survey of people with POTS, more than three-quarters (77%) of respondents reported being told by a physician that their symptoms were psychological or psychiatric in nature, compared to only 28% who reported a pre-existing comorbid psychiatric problem (Shaw et al., 2019). The prevalence of mental health symptoms in those with POTS is unknown, as some research has suggested that lifetime prevalence of depressive and anxiety disorders among POTS is similar to the general population (Raj et al., 2009) while other research has found increased rates of mild to moderate depression and anxiety (Attard et al., 2023). It is also important to note that anxiety measures may over-predict the co-occurrence of anxiety and POTS due to the similarity between somatic indicators of anxiety and the characteristic symptoms of POTS (Raj et al., 2009).

Quality of life (QOL) is markedly impaired among individuals with POTS, with the most severe and consistent effects in physical health domains (Hockin et al., 2022). Treatments largely target symptom relief, with nonpharmacological interventions consisting of behavioral and lifestyle modifications recommended as first-line treatment (Bryarly et al., 2019). Despite present treatment options, residual symptoms significantly reduce QOL. Research in other chronic disease populations has shown that coping is consistently positively associated with QOL (Kristofferzon et al., 2018), an area that needs more research in POTS.

Results presented here derive from a study originally aimed to explore patient perspectives on exercise as a treatment for POTS using qualitative focus groups. However, the rich data collected provided insights far beyond our initial scope. In this paper, we present a subset of qualitative data, focusing on illness-related experiences, emotions, and coping which contributes to the expanding landscape of qualitative research in this field (Knoop and Dunwoody, 2023; Knoop et al., 2023; Waterman et al., 2023). By drawing from a sample of adults encompassing varying durations since diagnosis and symptom burdens, we aim to offer valuable insights into the lived experiences of individuals with POTS and to inform how healthcare providers can more respectfully and effectively support this population.

Methods

Study design and participants

Participants were recruited through Vanderbilt University Medical Center (VUMC) and online. VUMC is a major academic center that serves as a national referral for POTS patients through the Autonomic Dysfunction Center and the Osher Center for Integrative Health. Flyers were posted at the Osher Center and online recruitment occurred through ResearchMatch (Harris et al., 2012), a U.S.-based national research repository. Inclusion criteria were English-speaking adults (age >18) with a diagnosis of POTS made by a qualified medical professional. Exclusion criteria were factors that may interfere with focus group participation including severe cognitive impairment, moderate to severe or unresolved traumatic brain injury, and severe mental illness (i.e. schizophrenia, psychotic disorder). Inclusion criteria, including POTS diagnosis, were fully self-reported. To recruit a diverse sample, ResearchMatch filters were used to send the study announcement to those individuals registered who reported having POTS and being members of minoritized racial groups, in addition to random samples of those with POTS.

Study procedures

All study procedures and materials were reviewed and approved by the Institutional Review Board at Vanderbilt University Medical Center (IRB # 211754). Data collection, coding, and analysis was managed by the Vanderbilt University Qualitative Research Core (VU-QRC). The VU-QRC is a service Core of the Division of Health Services Research in the Department of Medicine and Public Health at Vanderbilt University. It operates independently and contracts with investigators to assist them in producing high quality qualitative studies. Study procedures followed the Consolidated criteria for reporting qualitative research (COREQ; Tong et al., 2007). The COREQ checklist is included as a supplement.

Interested individuals were directed to a REDCap survey to complete an e-Consent and eligibility forms and then automatically directed to an online survey including demographic and exercise behavior questions and then to a focus group scheduling tool. Survey data were collected and managed using REDCap electronic data capture tools hosted at VUMC (Harris et al., 2009, 2019). Focus groups were conducted online via Zoom between October and December of 2022. Following the first group, remaining groups were stratified by self-reported exercise behavior (i.e., low exercise vs. high exercise) to allow for more discussion about barriers among those reporting low exercise and facilitators among those reporting high exercise. Recruitment stopped when the team agreed that thematic saturation was reached, and no new themes were identified during qualitative analysis (Saunders et al., 2018).

A focus group guide was developed by the coauthors in collaboration with the VU-QRC. Because the study was originally designed to explore beliefs about exercise, the guide was informed by social cognitive theory (SCT), which examines influences on individuals’ behavior (Bandura, 2012). The guide included questions about living with POTS, lifestyle management, and exercise. It was pilot tested among the study team members and revised and is included as a supplement.

Focus groups were conducted by one member of the VU-QRC (K.B., MA in Social Psychology, VU-QRC Coordinator, female, 12 years qualitative research experience, no prior relationship with study participants), the PI (E.G.W., PhD in Educational Psychology, Health Psychologist, female, 3 years qualitative research experience, prior clinical relationship with one study participant who was placed in a group facilitated by K.B.), and/or postdoctoral psychology fellow (K.R., PsyD in Clinical Psychology, female, 2 years of qualitative research experience, no prior relationship with study participants). All focus groups were audio-recorded and transcribed using an IRB-approved transcription service (rev.com). Transcripts were not reviewed by participants since they were recorded and transcribed verbatim.

Data coding and analysis

A hierarchical coding system was developed and refined using the interview guide and preliminary review of the transcripts, consisting of major categories and subcategories. Major categories included: (1) patient characteristics; (2) management strategies; (3) health system interactions; (4) quality of life; (5) emotions; (6) coping strategies; (7) attitudes and beliefs; (8) information sources; (9) people/interactions; (10) barriers and facilitators; (11) world events; (12) change over time; (13) suggestions; (14) what doctors need to know; and (15) notable quotations. Structural categories included timeframe (pre/post diagnosis) and whether an individual was stratified into in a “high” or “low” exercise group. Most categories had subcategories (3–10), with some subcategories having additional levels of hierarchical division. Definitions and rules were written for coding categories and the codebook was reviewed by team members with clinical expertise with POTS. The coding system is included as a supplement.

Coding process

Four trained coders (E.G.W., C.B., K.R., K.B.) first established reliability in using the coding system on two transcripts. Transcripts were compared, and discrepancies were resolved through reconciliation. After consensus was reached, coders divided and independently coded the remaining transcripts. Several additional specific codes (subcategories of the list above) were added and during these meetings, including additional specific symptom codes, additional management strategies, attribution by medical providers of symptoms to psychological factors, and deconditioning. Each statement was treated as a separate quote and assigned up to 12 different codes. The coded transcripts were combined and sorted by code. Transcripts, quotations, and codes were managed using Microsoft Excel 2016 and SPSS version 28.

Analysis process and conceptual framework

We used an iterative inductive/deductive approach (Azungah, 2018; Fereday and Muir-Cochrane, 2006; Tjora, 2018) for qualitative analysis. This approach is commonly used in health research and is appropriate for studies in which the research questions are theoretically grounded, but researchers want to allow for the emergence of unanticipated and novel findings (Bingham, 2023). We chose this approach because there are well-established theoretical concepts for understanding exercise behavior in general, but no research examining behavioral or psychological influences on exercise among the POTS population. Inductively, we used the coded sorted quotes to identify themes and relationships between themes. Initial analysis revealed that while many themes related to the original purpose of the study (exercise), many themes also emerged related to the overall experience of living with POTS, across all groups. We agreed to analyze these two categories separately, and thus extracted the quotes and themes related to illness experience. Because of the relevance of coping for individuals living with chronic illness and the emergence of many themes related to coping, we chose to use the Transactional Model of Stress and Coping (Lazarus and Folkman, 1984) for deductive analysis, which posits that one’s appraisal of challenging experiences generates emotions and results in attempts at coping. This analysis resulted in a conceptual framework (Figure 1). The process was iterative in that the framework is theoretically informed, while the specific content is derived from the qualitative data.

Figure 1.

Conceptual framework of qualitative themes.

Results

Sample characteristics

Of 44 individuals who scheduled themselves for a focus group, 30 attended. In accordance with approved procedures, one participant was excluded for not following procedures. Data on this participant was not included in the analysis. The final sample included 29 study completers.

Focus group sample demographics are reported in Table 1. Our sample was primarily female (93%) and white (69%) with a mean age of 38 years. Our sample reported diversity in age of onset of POTS symptoms (12 to 56 years old) and an average diagnostic delay of 6 years. The sample had a high rate of disability (as measured by self-reported impact on life activities) and of diagnosed and suspected comorbidities. The mean duration of focus groups was 87 minutes (range, 77–100 minutes).

Table 1.

Focus group sample demographic and clinical characteristics.

Variable	Mean (SD)/count (%)
Age	38.14 (11.12)
Gender
Female	27 (93.10%)
Male	1 (3.45%)
Transgender	1 (3.45%)
Racial/ethnic identity*
White	20 (68.97%)
Black	1 (3.45%)
Asian	5 (17.24%)
Multiracial	2 (6.90%)
Did not disclose	2 (6.90%)
Employment Status
Employed full time	7 (23.33%)
Employed part time (>20 hrs/wk)	3 (10.0%)
Employed part time (<20 hrs/wk)	6 (20.0%)
Disabled/on disability	8 (26.67%)
In school full time	3 (10.0%)
In school part time	0 (0.0%)
Unemployed/between jobs	2 (6.67%)
Diagnosis
Age at symptom onset	25.47 (11.11)
Age at formal diagnosis	31.37 (11.72)
Diagnostic delay (calculated)	5.9 (8.28)
Type of clinician diagnosed
Cardiologist	18 (62.07%)
Neurologist	6 (20.69%)
Primary Care	4 (13.79%)
Other (Specified as gastroenterologist)	1 (3.45%)
Comorbidities
Number of diagnosed comorbidities	1.86 (1.55)
Number of suspected comorbidities	1.62 (1.47)
Functional disability
Avg impact of symptoms on daily activity (0–10)	6.21 (2.86)
Avg impact of symptoms on recreational, social, family activity (0–10)	5.75 (2.93)
Avg impact of symptoms on work (0–10)	5.93 (2.88)
Number of days your symptoms kept you from performing your daily activities over the last 6 months	90.31 (68.34)

^*Participants could indicate more than one racial/ethnic category and so total is greater than sample size.

Thematic analysis

Figure 1 presents the conceptual framework that emerged from qualitative analysis, and expresses findings in terms of lived experiences, emotions, and coping and how those vary pre/post-diagnosis. The top portion of the figure, labeled “Experiences,” represents the important challenges related to healthcare, diagnosis and treatment, physical symptoms, and life impacts of POTS. The section labeled “Emotions” includes emotional responses to these lived experiences. The bottom section includes coping strategies employed to manage these challenges and their emotional impacts. These themes were integrated into the solutions participants suggested as necessary for their treatment and quality of life.

In the following sections, we discuss each element of the conceptual framework and include relevant quotations. Full quotations, along with participant and group IDs, are included in a supplemental table. Frequency counts for themes are not included as the iterative inductive/deductive approach is a thematic, not quantitative, approach to analyzing qualitative data (Fereday and Muir-Cochrane, 2006).

Pre-diagnosis

Medical and diagnostic experiences

Theme 1: Symptom onset and duration

Participants shared both commonality and divergence in their diagnostic experiences. Many reported that they had symptoms for years or even decades before diagnosis. One participant shared, “I think I have a long history of POTS. I think I had [it for] many, many years, but I thought that [it] was burn out, or there was always issues that made me feel tired… But in the last five years … I felt sick all the time.” Another shared, “diagnosed at 42 but it has really been haunting me my whole life.”

Others reported a rapid onset of symptoms or a sudden worsening of mild or intermittent symptoms, typically following an infection or physical trauma. One stated, “I can pretty much draw a line… I was on my feet for 12 hours three times a week. I mean, I was very active, and suddenly at work I was starting to be dizzy when I stood up or I was dropping things and I was losing my appetite and things were just very rapidly changing after that head injury.” Another explained, “I had gone from being relatively healthy. Could run a mile without any difficulty to not being able to get out of bed overnight. I’m a pretty independent, determined individual. So I refused to accept that it was just normal. I was 33 at the time and not once in my life had that been normal.”

Theme 2: Diagnosis and dismissal

Participants discussed having to see multiple specialists before getting diagnosed and being dismissed or told that symptoms were psychological in origin. One participant shared, “I think the abridged version of the journey is two year long diagnostic batting around with different physicians who didn’t know what I was talking about, who said this is just something that happens to young women or the very clear, there’s nothing wrong with you.” Another stated, “So he [PCP] sent me to a bunch of specialists, one of whom gave me the, ‘You’re anxious,’ thing. And it’s like, ‘Well, that’s funny because I’ve never been anxious getting in the shower before, and I’ve been doing it now for 47 years.’ ”

Several participants shared experiences of feeling taken more seriously by mental health providers than other clinicians. One stated, “So I actually feel ironically, that mental health professionals have actually been the most understanding … which I find ironic in mental health … that I’m taken more seriously.” Several shared that it was only when they fainted in front of others that they felt taken seriously. One shared,“[DATE] is when I fainted. I was working at a hospital, so fortunately I fainted in front of a group of doctors and since they saw it, they took it more seriously … So he [doctor] admitted me, did a ton of testing and it still took about eight months with different specialists to get a diagnosis.”

Theme 3: Bias

Participants also discussed believing that gender bias contributed to them being dismissed. One shared, “I brought my dad with me and all of a sudden he [doctor] was like, ‘Oh, okay. Yeah, I believe you.’ So, I think being a woman makes everything harder when you’re going to the doctor, but especially when it’s such vague symptoms … And it’s like, ‘Well, you must be depressed.’ I’m like, ‘I’ve never been depressed.’ ” Additionally, participants shared experiences with bias based on race, disability status, or size/weight. One shared, regarding deconditioning, “I hear that all the time, especially being a big girl… And I think even doctors in the past, they don’t even believe me when I say that I do walk and I do these things.”

Emotions

Theme 1: Anger

Anger was related to diagnostic delays, lack of medical provider knowledge, and being dismissed and/or told symptoms were psychological. Notably, some participants expressed ongoing anger over experiences they had years or even decades ago. For example, “I think because I was that age [14], I think I experienced that whole [diagnostic] process in such a traumatic way… But I have so much anger and I hate doctors. I absolutely loathe doctors. I have a hard time feeling rational and open-minded with doctors because there was first that primary care physician who told me, ‘There’s nothing wrong with you, it’s all in your head.’ ”

Theme 2: Confusion and self-doubt

The theme of self-doubt and confusion involved experiences of questioning their interpretation of symptoms that were wide-ranging and diffuse, and frequently variable in their intensity. One participant stated, “It was just like, this doesn’t make sense. And I know I’m not crazy, but I feel like I’m going crazy because it doesn’t make physiological sense based on anything I’ve ever learned or any experience I’ve ever had.”

Theme 3: Gratitude

The gratitude participants expressed regarding the pre-diagnosis phase typically involved acknowledging when they believed their experience was easier than others with POTS, or for positive health system experiences. For example, one explained, “I was fortunate that when I did get diagnosed with POTS, I was sent straight to a POTS specialist. Vanderbilt has an autonomic center. People come from all over to be here. So I feel really lucky to be here and my doctor’s amazing.”

Coping

Theme 1: Self-advocacy

Overall, participants discussed primarily using active coping strategies, including self-advocacy. Participants reported having to discover the diagnosis themselves, track their vitals using smartwatches, and directly ask to be evaluated for POTS. One shared, “I read an article on CNN about long COVID… And it was about POTS. And I thought, ‘Hey, that’s what I feel.’ And then I used [my husband’s] heart rate watch… And every time I got up, I got 50, 60 heart rates, beats per minute extra. So I went to the doctor and we talked about it. And he said, ‘Yeah, that’s obvious.’” Participants also discussed feeling like they had to be strategic in how they brought up their concerns. One explained, “And so when I went to the doctor, I was like, ‘Hey, could you please recheck me standing?’ He never would’ve thought of doing that himself, so the only reason I even got a diagnosis within 35 years is because I knew to ask the right questions.”

Theme 2: Avoidance

Participants also acknowledged avoidant coping, including denial of the severity or chronicity of their condition. One explained, “I refused to think it was anything long-term, and I just kept pushing myself until the people that I was working with just said, ‘You can’t work anymore. You really need to figure this out.’ ” Others discussed avoiding revealing their suffering to others, avoiding medical care out of fear of being judged or dismissed, and even avoiding being formally evaluated for POTS out of fear that the assessment results would not confirm their subjective experiences. One participant shared, “I was afraid to take [the] tilt table test, because I know that it’s not positive for everyone, but I was worried that if it wasn’t then I would be treated like, ‘Oh, there is nothing.’ …When it was approved, I didn’t do it, because I was afraid of that. So I just pretended I never got the approval and just went on.”

After diagnosis/life with POTS

Illness-related experiences

Theme 1: Importance of diagnosis

Many themes involving illness-related experiences emerged in the post-diagnosis period, including the importance of diagnosis for being taken seriously and accessing treatment. One participant shared, “[I]t’s like this magic piece of paper that now all of a sudden my doctors are willing to prescribe meds or try different things.” At the same time, participants described feeling like there is little guidance or support after diagnosis. For example, “So [you] got your diagnosis, you get medication or not, and then that’s it. And that feels lonely in your search for the solution.”

Theme 2: Role of comorbidities

Our sample had a high rate of reported comorbidities. Some participants expressed that their comorbidities complicated treatment (e.g., “Being dismissed is the number one thing that doctors seem to do. It’s especially worse if you have other conditions because there’s this diffusion of responsibilities”), while others shared that getting comorbidities diagnosed and treated has been helpful (e.g., “[H]e [POTS specialist] was the one who suggested that I get tested for Ehlers-Danlos Syndrome. And that’s been a game changer to realize that I have that as well.”) Additionally, some participants discussed experiences of comorbidities being helpful for being taken seriously. One participant who reported she had rheumatoid arthritis shared, “I just feel like I wouldn’t be taken seriously if that [POTS] was my only diagnosis.”

Theme 3: Quality of life impact— “Debilitating”

Participants shared experiences of having high symptom burdens and significantly reduced quality of life. The word “debilitating” was used by several. One participant shared the impact on schooling and career, “I’ve had to quit studying entirely. My entire life has changed. I have no hope to become an attorney now. The brain fog is so bad, sometimes I’ve forgotten what numbers represent in real life. It’s completely debilitating. Another difficult part would be that it’s dynamic. So one day I can be relatively fine and feeling okay and I can do chores around the house and then the next day, I can’t get out of bed.” Another shared, “I would say I’m stable now, but I still can’t work full time. I have a lot of fatigue, so it’s just some days I have energy to do a few normal things and then a lot of days I don’t really have energy to do anything. So it’s like, do I take a shower today or do I go to the store? I can’t do both.” Another shared, “the most just debilitating part of the POTS is the chronic fatigue and brain fog.”

Theme 4: Challenge of invisible illness

Participants also discussed the challenges of having an “invisible illness.” One explained, “[T]he thing that frustrates me the most is that invisible illness part of it where even on days when I feel miserable, like I want to throw up, like I need to pass out, no one can see it.” Another commonly discussed experience was a marked sense of uncertainty related to the variable nature of POTS symptoms. One participant described, “[Y]ou feel like every day is this high wire act. Like [other participant] was saying, so mercurial, it’s hard to know if you had a bad day just because you have POTS and 25% of the time you have a bad day or because you did something.”

Emotions

Theme 1: Anger and frustration

As with the diagnostic process, participants expressed anger and frustration regarding being dismissed and/or for the medical system not being set up to provide the care they need. One participant shared, “But it just feels like modern medicine doesn’t have a whole lot of answers right now and the answers that are there, it seems like even some of the top specialists you can finally get an appointment with after two years aren’t very interested in trying to figure it out. It’s very, very frustrating to run around with printed out, published peer review journal articles about our condition or about some new development that they’ve discovered, trying to get my doctors to run a test or to prescribe a medication and just to try something.” Additionally, participants expressed frustration with the condition itself (e.g., “I really am frustrated with POTS, so I want to get rid of it”), or with themselves for not being able to function at the level they want to or are accustomed to (e.g., “It’s hard not to be frustrated with myself, even though I know it’s not my fault”).

Theme 2: Anxiety and fear

In the pre-diagnosis phase, the uncertainty expressed was related to self-doubt and questioning the validity or coherence of symptoms; post-diagnosis, participants expressed anxiety related to the uncertainty of long-term prognosis, including fear they will not be able to continue working, or have the life they had planned. One recently diagnosed participant shared, “Yeah, and I feel stress from it, too… I’ve always given 120% in everything that I do. And now I can’t do that the same way. And so, it causes a lot of anxiety, also because I just don’t know how good the care is that I’m getting. I don’t know what the future will hold, how long I’m going to have this, can I keep my job, even?”

Theme 3: Grief

Participants also expressed grief for how POTS has changed their life, including in connection to having to stop working, drop out of school, or change career paths, as well as the overall experience of having a burdensome, difficult-to-manage condition. One participant described how she feels about the chronicity and burden of her symptoms as “Pretty bleak if I’m being honest. Pretty darn bleak.”

Theme 4: Gratitude

Despite the burdens described, participants expressed gratitude. Some expressed gratitude for having a good healthcare team and for situations that make managing POTS easier (e.g., “I know not everyone can just not work and be able to afford to live. And I think about that a lot. I have a lot of support and not everyone has that”). Participants also acknowledged the spectrum of POTS, recognizing that their situation could be worse, and within the groups, shared compassion for other participants who communicated more severe symptoms.

Coping

Theme 1: Problem-focused coping and pacing

Commonly discussed coping strategies involved active coping, including problem-focused coping, continuous trial and error/problem-solving, and pacing. Many discussed an almost constant problem-solving process throughout the day to avoid triggers or ameliorate symptoms. One described how she was sitting in the moment, stating, “those are all little tiny lifestyle modifications that no one even thinks about… it’s really just management, almost like crisis management moment to moment.”

Participants also shared larger examples of problem-focused coping, including changing medical providers, adjusting their schedules, using mobility devices to avoid orthostatic stress, and even relocating to a less hot climate. Many participants shared that pacing their activity is one of the most helpful strategies. One stated, “I think for me it’s just balancing your energy out during the day. That’s the most important thing I’ve learned… balancing your whole energy program. You have 50% of your energy as normal people do.” Another shared, “Yeah, if I can avoid standing the more time during the day, then the more energy I have. I also have to sleep 10 to 12 hours a day, which is super frustrating, but I can’t function otherwise.”

Theme 2: Social support

Social support was another frequently discussed type of coping. Participants described the importance of support from family, friends, and partners, as well as peer support from others with POTS, typically through online support groups. One participant shared, “And it was very, very difficult as a single mom of two, because I barely had the energy to even order something for them to eat, to even have the delivery guy come and bring it, because I was so exhausted… Getting married a couple years ago and cohabitating with an able bodied person has really been a blessing.” Another shared, regarding online support groups, “The local groups will tell you what doctors to go to or avoid. And that is the biggest, best reason for the local group and save you years off your life and frustration. And the national groups … are best for things like exercise recommendations, medications, what dosage, what works for you… ”

Theme 3: Acceptance

Acceptance was a commonly discussed form of emotion-focused coping. Acceptance was described as a long and difficult process that is helpful for well-being. One participant explained, “I felt like in the beginning I always compared myself to who I was pre-sickness. I wanted to get back to who that person was, could do, was capable of. And I very hardly had to just accept and say goodbye. But that doesn’t mean I won’t be as strong, it just means I’m different. And it just means I have to do things differently. Did I know that at the time? No, I didn’t. And it took a lot to get to where I am now.” Another shared, “I don’t have to feel bad or guilty about the fact that yes, I use a wheelchair. No, I don’t use it all the time. Yes, I could probably technically go without it, but I’d feel like crap and I might faint. So, it’s been really great just embracing the fact that it’s okay to need help. It’s okay to not be able to do certain things and it’s okay to not be abled.”

Theme 4: Avoidance

Similarly to the pre-diagnosis phase, some expressed avoidant coping strategies, including pretending everything is fine or significantly reducing activity to avoid triggering symptoms. One shared, “I feel like I’m at a point in my life where I’m just cutting things out versus adapting in a way that feels sustainable or healthy.” Notably, several also discussed avoiding seeking mental health care despite recognizing a need for it due to fears of having their physical symptoms misclassified, even after diagnosis. One shared, “I think getting so many doctors to misdiagnose me as being depressed made me really averse to seeking any kind of counseling or anything like that. I was getting increasingly anxious, but I didn’t want to admit it. Because they’d been telling me, ‘Oh, it’s depression, anxiety’ the whole time. And I knew it wasn’t. So, when I started getting more anxious and my symptoms were getting worse when I couldn’t find help.”

Suggestions and what clinicians need to know

Suggestions for clinical care and “what clinicians need to know” were other themes that emerged in the analysis.

Suggestions

Theme 1: Greater awareness and more education for medical professionals

Participants expressed the need for greater awareness of POTS and its manifestations, especially among medical professionals. Several shared frustration that they saw many clinicians who could have diagnosed them earlier if they knew more. One shared, “I think just more general medical education for providers so that they know what to look for. I think especially because we don’t have real diagnostics or real treatments available. Primary care could address a lot of the stuff that’s symptom management. Primary care could be doing lean tests in the office to people without having to send them to cardiology.” Another shared, “I’ve seen the difference between having doctors who understand this versus doctors who don’t, and it’s a world of difference.”

Theme 2: Collaboration and holistic care

Several participants shared that what they believe would be most helpful to them and others with POTS is a more holistic model of care involving multiple types of treatment providers working collaboratively. One participant stated, “Then also just to encourage the collaboration of other medical professionals, aside from medication, like physical therapists, occupational therapists. I’ve always kind of been the one driving that and reaching out to the different medical professionals and really asking about it.”

Theme 3: Mental health for POTS patients

As discussed above, one of the most discussed experiences was having POTS symptoms mislabeled or misdiagnosed as anxiety. Participants shared a fear of disclosing mental health struggles out of concern that doing so would lead to them being taken less seriously. However, several participants recognized that stress is a symptom trigger for them or that they have experienced mental health symptoms linked to worsening health. One explained, “[E]veryone feels a little better when their stress level’s lower… I think a lot of people probably push back on that, because they’ve been told it’s in their head for so long… You don’t want to admit it to yourself. So, I think there has to be a better approach on that kind of stuff where it’s in addition to this would be helpful, at least give it a try. It’s not going to cure you. If you don’t have any stress, you don’t have any anxiety, you’re not going to feel 100% better, but you might feel 10% better. You might have a little bit more energy to do other things.”

What do clinicians need to know?

Theme 1: POTS can include a wide array of symptoms, is chronic, and is difficult to live with and manage

One of the most commonly discussed features of POTS was how wide-ranging and variable symptoms can be. Many felt this aspect of the condition is not well appreciated, even by clinicians who treat POTS. Additionally, many wished others could understand just how burdensome and difficult POTS can be, with several referring to the management as “a full-time job.” One participant stated, “I think the biggest thing I want doctors to be more aware of is that managing a chronic illness takes so much attention and planning and scheduling and allocating resources. I think if people aren’t aware of that, it looks to the outside like anxiety, because it looks like you’re constantly just anxious and catastrophizing about the future when… you’re not catastrophizing, if it’s actually a catastrophe and it’s not anxiety if you’re right. So, I think being able to make that clear distinction between that a lot of the behaviors people describe are justified and necessary coping mechanisms, not anxiety, and that’s kind of the only way you can function is by doing all of these things in the background, which I would love to not do.”

Theme 2: Tachycardia may not be the most bothersome symptom

Several participants shared that they either don’t notice or are not bothered by tachycardia. Some discussed this as a potential reason for diagnostic delay, for example, “There were some symptoms I wasn’t even aware of. I didn’t know my heart rate doubled… that hadn’t even crossed my mind. All I knew was I was just really tired and it was getting worse.” Others expressed frustration with the emphasis on heart rate control in treatment when their concerns are other symptoms that may not be affected by heart rate modifying medications, including fatigue, GI complaints, and headaches. For example, “I don’t really care about my racing heart… It doesn’t bother me in the slightest. So, doctors are always like, ‘Well, you really need to get this tachycardia under control.’ And that’s just, I call it my little hummingbird heart. It just goes. It’s the downstream things that are debilitating to me that doctors don’t seem to know about or care about.” Another shared, “The problem is all the doctors seem to care about that measurable thing, when I think that the heart rate is probably the eighth most important symptom I have or maybe 15^th.”

Theme 3: Believe your patients, demonstrate professional humility, and be okay with saying “I don’t know”

Related to the commonly expressed frustration with being dismissed, participants expressed wanting medical providers who believe them about their own experience and express humility. In the pre-diagnosis phase, participants raised this issue regarding the etiology of their symptoms. One explained, “I don’t understand why doctors seem to think that we’ve discovered all diseases, everything’s figured out, and they just have to put you in a box, and if you don’t fit a box, you must not be sick… I don’t know why doctors don’t realize we don’t have everything about the human body figured out.”

In the post-diagnosis phase, participants wanted greater acknowledgment of how much is still unknown about POTS and the limits of available treatments. One shared, “It’s amazing how fast the doctors are to say, ‘Oh, you’re just crazy,’ or, ‘You’re just depressed,’ or, ‘You’re just trying to get attention,’ or whatever. And it’s like the vast majority of people just want to feel normal. They want to be able to do what they used to do. They want to get back to where they were. This isn’t about attention seeking. So, just believe them. Trust, they know what they’re talking about. And then actually to be okay with, ‘I don’t know about that.’ I was actually okay when all of the local doctors either said, ‘I’ve never heard of that,’ or, ‘I’ve only had one patient with that,’ or whatever. But they were at least willing to then listen to what I had to say.”

Discussion

Functioning and navigating medical care with a condition that causes variable and diffuse symptoms was a consistent theme. Pre-diagnosis, these challenges manifested as diagnostic delays and being dismissed and/or disbelieved. Participants reported emotional reactions including anger and confusion, but also, in hindsight, expressed gratitude for their eventual diagnosis and those who helped and supported them. Post-diagnosis, they shared ongoing challenges with managing their illness and the complexity of medical care for a condition without clear, effective treatments, and ongoing emotional reactions of anger and uncertainty, as well as anxiety, overwhelm, and grief. In both phases, participants highlighted the importance of adopting active coping strategies to confront these diverse challenges, including the problem-focused strategies of self-advocacy, problem-solving, pacing, and the emotion-focused strategies of acceptance and social support.

Our findings also revealed instances of avoidant coping, which, in many cases, stemmed from fears of being disbelieved or dismissed. It is likely challenging for many individuals with POTS to balance the need to avoid situations and factors that trigger symptoms without becoming overly cautious or withdrawn. It is possible that factors such as anxiety and catastrophizing impact functional disability and QOL among POTS patients just as they are suspected to do in conditions such as chronic pain (Martinez-Calderon et al., 2019). However, it is critical that clinicians do not assume that individuals with POTS are engaging in avoidant coping, and that if catastrophizing or avoidance are observed, they are approached in a supportive, non-stigmatizing, patient-centered way. These findings underscore the essential role of mental health providers in supporting individuals with POTS. Pre-diagnosis, they can offer valuable insights by helping individuals with medically unexplained symptoms explore the interplay between physical symptoms, underlying stressors, and mental health and manage the stress associated with symptoms and their functional impact. By reframing mental health assessment as an integral component of whole person care rather than a diagnosis of exclusion, clinicians can empower individuals to advocate for themselves effectively, including for appropriate and thorough medical workup and countering dismissal and inappropriate assumptions of psychological etiology. Post-diagnosis, mental health support becomes instrumental in helping individuals process grief, move towards adaptive acceptance, and implement active coping and behavioral and lifestyle management strategies. As some of our participants shared, stress may be a contributor to symptom flares or severity for some, just as it is in most health conditions (Chang, 2011; Fischer et al., 2016; McKernan et al., 2020), and thus stress management is likely a helpful target. However, our findings also underscore the detrimental impact of assuming medically unexplained symptoms are psychologically driven, which, perhaps paradoxically, may dissuade individuals from seeking appropriate mental health support when needed.

Participants’ clinical care suggestions further enriched our findings. These suggestions primarily focused on greater awareness and understanding of POTS, and care that starts with believing patients about their own symptoms and experience and designing and delivering care that reflects their experiences and priorities. These findings align with established principles for patient-centered care (Epstein and Street, 2011) and research on what patients report builds their trust in medical providers (Beach et al., 2017), which have consistently been associated with improved patient satisfaction and better healthcare outcomes (Asmat et al., 2022; Rathert et al., 2012; Stewart et al., 2000).

It is notable that our findings converge with those of Knoop et al (2023), who found that among a sample of individuals with POTS in England, participants reported stress from diagnostic delays and disbelief, and increased sense of coherence with diagnosis. Our studies were conducted in different countries with patients at different points in their diagnostic journeys and used different sampling techniques and theoretical lenses. However, both highlighted themes including the desire for and validation of a diagnosis, individual persistence/self-advocacy, and the significant burden of POTS, suggesting the experiences reported herein may be common. However, a next step is to use larger, more diverse samples to examine coping strategies and how they affect symptom burden, QOL, functional disability, and emotional well-being among this population.

This study has several limitations. This sample had some racial and gender diversity but as a small sample, still included very few individuals from groups underrepresented in the research (i.e. BIPOC individuals, men, and gender non-conforming individuals). There is a pressing need for more inclusive recruitment strategies to capture a broader spectrum of experiences within the POTS community. Research has shown that there are disparities in the diagnosis and treatment of various medical conditions based on race and ethnicity (Kim et al., 2018). In the case of POTS, these biases could manifest in several ways including access to diagnosis. We chose to recruit via ResearchMatch for a diverse sample, but therefore our inclusion criteria were self-reported and we could not verify that participants met criteria for POTS. Additionally, our sample reported high symptom burden and high rates of disability. It may be that individuals who are more impacted by their condition are more motivated to engage in research. It will be important to validate these findings in larger samples with more diversity in symptom presentations. Finally, the study’s original focus on exercise and the stratification of groups by exercise level may have influenced the types of experiences, emotions, and coping strategies shared. The themes presented emerged across all focus groups, however the amount of time each topic and theme was discussed varied by group. Future research should aim to address these limitations by employing more diverse recruitment strategies and adopting a broader scope of inquiry.

Conclusions

Our findings illuminate the multifaceted experiences of individuals living with POTS. One important implication of these findings is the importance of patient centered care, as participants consistently emphasized the need for healthcare providers to adopt an approach that validates their experiences and acknowledges the unique challenges they face, as well as collaboratively devise comprehensive care plans.

There is a clear need for further research in this area. A larger study examining coping strategies in POTS could provide valuable information about the effectiveness of different coping mechanisms in mitigating symptom burden and improving QOL. Additionally, there is an opportunity to design psychosocial interventions tailored to support individuals with POTS in coping with the stressors associated with their condition. By incorporating stress management, coping skill development, and mental health support, such interventions could empower patients to navigate the challenges of living with POTS more effectively.