Patients’ experiences of living with medically unexplained symptoms (MUS): a qualitative study

A qualitative content analysis of 20 filmed, semi-structured interviews with patients presenting MUS was performed. The interviews took place in a doctor’s surgery at the Centre for Modern Interdisciplinary Technologies at Nicolaus Copernicus University in Torun, Poland, between February 2015 and December 2015. A purposive sample of 20 patients (8 men and 12 women, aged 18 to 57) was first recruited through a single general practice, which provides medical services to 4000 patients [28]. The mean age of the interviewees was 37.4 years. The patients who were diagnosed with F45, that is, psychosomatic or somatoform disorders according to ICD-10, and who had complained about the symptoms for at least 2 years, were invited to participate in the study. Twenty-one patients were contacted by phone or directly by their GP, and only one refused to be filmed. All patients were also asked to fill in the Four-Dimensional Symptom Questionnaire (4 DSQ) - a test that is used to evaluate and measure the four most common mental disorders in general practice: distress, depression, anxiety, and somatization - and include the related symptoms that had occurred over the last week [29]. Some patients scored low on the somatization dimension, which indicates that they did not present any symptoms in the week when the interview was conducted - which, in turn, may suggest they coped well with the symptoms. Although the 4DSQ test results were relevant for the subsequent stages of the research project, which selected patients with high somatization to explore their behaviour, they did not affect the present study and qualitative content analysis of the interviews. The patients gave their written informed consent to participate in the study and to be filmed, on condition that they would remain fully anonymous. They wanted to remain anonymous in the published data, and to be interviewed by the doctor they had known well and whom they trusted, refusing to be interviewed by anyone else. There were 14 patients with higher education, six with secondary education, and some patients were highly educated and held prestigious jobs. In the interviews, they often revealed deeply personal and secret details from their life, which were triggers of MUS narratives. Their major symptoms included: headaches, backpain, muscle pain, chest pain, abdominal pain, blackouts, oversweating, palpitations, blurred vision, fatigue, shortness of breath and dizziness. According to available medical records, three patients suffered from chronic conditions: chronic sinusitis, moderate arterial hypertension and varicose veins.

The interviews were conducted by the second author (SC), who was the only interviewing researcher and the family doctor of the majority of the patients, according to the topic guide derived from the literature on MUS [30], shown in Table 1. To ensure the patients’ understanding, the interview questions were pilot tested with two patients with MUS, in 2014. Ethical approval of the study’s research plan, including pilot testing, was granted by the Bioethical Commission of the Kuyavian-Pomeranian Doctors Chamber in Torun, Poland, in September 2014.

The average duration of the interview was 40 min. Some patients responded emotionally to the stories they told and cried or presented other emotional signals such as self-touching during the interview. After switching off the cameras, the patients analysed the videos with the GP. Most patients agreed that combining the interview and video filming helped them to understand the relationship between what they experienced, their emotions and their symptoms. It appears the patients found that the video registration had the additive effect of controlling their own behaviour, including their symptoms. They did not visit their GP for the next 3 months, and did not change the primary care setting.

The interview data were subsequently transcribed verbatim by two research assistants, verified by one of the authors (AS), and coded using NVivo 10. The method aimed to establish a straight descriptive summary of the informational contents of the data [31, 32]. The transcriptions were analysed independently by the two authors, who came from different disciplinary backgrounds: linguistics and health communication (AS), and primary care (SCz). Firstly, they were read thoroughly in order to obtain a sense of the texts as a whole, and a first-level, open coding was made for contents. Next, the codes were compared and matching codes were grouped into sub-themes and themes to identify key features of the patients’ views. The researchers paid attention to recurring patterns and the words that best captured the patients’ thoughts. The results were discussed by both researchers several times and necessary adjustments were made, to ensure validity. Table 2 demonstrates examples of meaning units, condensed meaning units, interpretation and formulated sub-themes and themes. The quotations representing the themes were next translated by the linguist (AS).

Within the first theme, two sub-themes emerged: symptom persistence or variability, and negative emotions. Most patients admitted that their symptoms had changed with time, whereas some patients claimed they were persistent. When the patients perceived the symptoms as the same, usually little or no improvement in their condition was reported. As stated by one of the patients:

P15: When I come to the doctor and he asks: ‘How are things?’, I say: ‘All the same’. It’s a situation in which simply nothing gets better. So…so I get medicines again and… and again it all goes on.

When the patients perceived a change in symptoms and their intensity, they often reported a better understanding of their illness. In the following extract, the patient points to a change in symptoms and her ability to control serious physical symptoms she used to suffer from:

GP: Are they [the symptoms, AS] the same (P2: No) and can you control them better?

P2: No. They are different because I used to have many physical symptoms and now, because you have to hide certain things, I don’t allow myself to have physical symptoms, which are visible, but it all goes to the head.

Another patient describes this process in the following way:

P20: I have a feeling that this tension is wandering all over my body, right (…). There is always something, a part of the body that in a given period of time is in focus and I am convinced that it is ill, that there is something wrong with it, because it gives me a lot of pain, there is something weird in it. And then it moves to something else, right? It is changing like this, but I’m never free from this.

Although the patients differed in their experiences and had difficulty describing emotions they felt, most of them disclosed associated negative emotions of fear, anger, powerlessness, and shame. The onset of symptoms was usually accompanied by fear of a serious disease or death, or failure to recover.

GP: ...what did you feel when the symptoms occurred? (…)

P1: When it comes to the tremors in particular, I felt infernal panic because I was convinced that something wrong was going on with me ...

Patients also admitted to experiencing sudden, irrational fears related to their environment:

GP: And because of these symptoms were you unable to do certain things?

P13: Oh yes, it happened. Last time, half a year ago, I came to work and for no obvious reason I got... so to say... I felt fear; I sat at the desk and I started to fear something, I wasn’t able to work, I was close to tears, I bent down and I was terrified of something, but didn't know what.

As shown in the example, fear was often constructed as a permanent emotional state, accompanying physical symptoms:

P15: ...I am a bundle of nerves, I’m afraid of everything, I won’t go out for a walk, I won’t go anywhere, I always need to have someone next to me and this is it. (...) I live in constant fear, I’m constantly thinking something bad is going to happen.

Apart from fear, patients also pointed to powerlessness:

P4: It was also related to a kind of feeling as if I had a blackout, that I was so powerless. I couldn’t get down to anything, couldn’t start doing anything, but I had to simply go to bed, I don’t know, wait till it’s over, but it simply overpowered and stopped me. I couldn’t start doing anything either, but it stopped me from everything (...). It was related to a kind of...a kind of powerlessness, that I stayed in bed, my body was so inert that I felt as if I was just collapsing, that I wasn’t even able to text anyone or hold my mobile phone, but simply... I lay in bed and I was weak with pain.

Another emotion reported by the patients was anger. The patients felt angry when the symptoms reappeared, which prevented them from moving on with their everyday routine.

GP: And when it comes to these symptoms (...) how do you react emotionally? What do you feel then?

P6: Damn it, I get angry that it caught me again. And this is a problem because because all the time, whenever it happens to me, it is at work.

Finally, some patients reported they felt ashamed of their symptoms and hid them from others. As explained by one of the patients:

P1: … I didn’t talk to people much unless they were trustworthy because I was kind of ashamed of this...I didn’t want to be Psycho Number 1 in company so not too many people knew.

The majority of the investigated patients admitted that they accepted the symptoms and had learnt to cope with them. Few patients reported feeling completely powerless while faced with the symptoms. According to the patients, successful coping strategies include the rationalization of the symptoms and the awareness of their psychological origin, self-development, and ignoring the symptoms.

What the patients found relevant was the moment they had realized that their symptoms were “psychological” and a serious illness was excluded. Only then could they learn to control the symptoms to some extent, and live with them. As one of the patients asserts:

P10: When I know that I’m able to rationally explain to myself that yes, it will pass, it is nothing that really puts my life at risk, that it is something that is probably related to my nerves, to a certain extent I’m able to control the situation (…). It seems to me that what helped me is the awareness, this increased awareness that it is… it has a psychological origin… and I think it is the most important thing, which I think is likely to help me to pull myself together in the future.

Others drew attention to self-development:

P7: I did a lot of self-work and I realized that… that… indeed… that it is not so easy to break me…

Furthermore, ignoring the symptoms or simply focusing attention on something else, for example reading a book, was reported as one of the most successful ways of coping with the symptoms:

P12: Replacing some thought, so that, I don’t know, I can focus on something else.

Most patients drew on various explanatory frameworks while describing their symptoms. Many of these accounts were expressed with uncertainty. Some patients explained their symptoms as a result of external, social factors, such as stress or life events; some admitted that the origin of the symptoms lies within themselves; others mentioned both personal and social factors and a few provided parallel somatic explanations.

An accumulation of stress caused by external factors, for instance, stressful situations at work or personal relations, was reported as one of the main triggers of the symptoms, as indicated in the following example:

P16: I explain it by the fact that, as I say, all the time I was in an environment where there was a very tense and nervous atmosphere, and it affected me…

When patients explained the symptoms as due to personal or internal factors, they mentioned genetics, personality or multiple psychological causes, and sometimes considered their illness as weakness. In the following example, the patient perceives his symptoms as a result of personal weakness and his inability to cope with things in life:

P6: You know what, you know what, I will tell you: I think they are due to my weakness…I have…I have…damn it… I have certain things to resolve, which I have to…I have to resolve and I’ve been putting them off for so terribly long…

In the next example, the patient states that her symptoms are inborn:

P15: I think that I inherited all these things from my mum. (…) because I remember when I was a kid the ambulance often came to her and it may have touched me and it probably grew, it grew…

While explaining the nature of their symptoms, the patients often underlined psychological causes:

GP: Where do you think the symptoms come from?

P14: I think that it all… comes that it… in my head…somewhere…right? it starts, right? Because because… this chest pain… it can’t have started by itself…. It is... when I start to analyse something, think about some situation, or about work, or a slight conflict in a relationship, all these things trigger the symptoms.

Finally, apart from social or personal explanations, a few patients tried to provide parallel somatic explanations, in which they referred to the body’s malfunctioning:

P1: I assume that...still... the whole body, also the brain, including what appears in it in the form of thoughts, are the connected vessels, so it is as if... I would call it, I explain this by some sort of... so to say a theory of impulse... in other words, if a thought is created, there is still a chemical reaction in the brain, right? Thus, if the thought is stressful, something is going on there, already at the level of cells or the hormonal level, so, if it happens in the brain, it may permeate to the rest of the body because because because it is as if... erm... I will say...erm... poisoned underground waters can poison the river, right?

The fourth major theme was patients’ expectations about the healthcare system. The majority of the patients admitted to disengaging from medical services or had no expectations, pointing out that extra tests or examinations would not reveal anything new:

GP: Do you seek help with other doctors, tests…?

P11: No. No, because the tests don’t seem to show anything (…). Yesterday I picked up health outcomes, I thought they were not mine – they were so good.

GP: Mhm

P11: So I think no…that.. that… it just doesn’t make sense.

Others were convinced that the best option was to accept the situation and not to probe further, if there is no need. They stressed they visit psychologists or psychiatrists privately:

P10: …I had two choices: either believe in the diagnoses or probe deeper (…) go from doctor to doctor, look for new medical tests, as if – let’s not be afraid to say that – to plunge into hypochondria; or go in the opposite direction and accept that it is not a real disease, I mean an organic disease, but that is kind of something of psychological nature and nothing in reality is wrong with me… I rather chose this way, for half a year I haven’t visited doctors, I visit a psychiatrist instead because I was diagnosed, in fact, with depression and my treatment has this angle, I also go to a psychologist and that’s it. I avoid doctors, if there’s simply no need.

Few patients expected the legitimization of their symptoms and publicizing the problem of MUS in the Polish healthcare system. However, they did wish to be taken seriously, on a par with patients with physical symptoms, and not to be dismissed:

P2: The first, most important issue is the publicizing of this problem because people like me will not seek help (…). I feel that people with such problems are pushed away because these are not physical symptoms. So, there are no screening tests because people like me do not exist… the help should be clearly defined… where I can go, what I can do in such situations, but there isn’t anything like this, so people like me don’t look for help.

This is a unique qualitative study exploring Polish patients’ perspectives on living with MUS. A qualitative approach is one of the best methods to elicit patients’ accounts and gain a deep understanding of their illness experiences. Our study extends knowledge of patients’ experiences with MUS. However, some limitations should also be considered. The patients in our study were recruited from a single GP’s practice, and most of them were interviewed by their own GP. This may have introduced a bias in the sample, reflecting experiences from a selected patient group and a special doctor-patient relationship. On the other hand, this allowed us to explore personal and sensitive themes and elicit accounts, that were often intimate, of the patients’ experiences of MUS, which they would not have revealed to anyone else. It should also be noted that all patients in our study were diagnosed with F45, thus were at a later stage of their illness, which may have restricted the variations in our findings. However, the selection of the group seems justified and shows that experiences of living with MUS differ depending on the stage of the diagnostic and treatment process and the level of insight gained by the patients.