Living with invisible medical disabilities: experiences and challenges of Chilean university students disclosed in medical consultations

ABSTRACT

Purpose

The objective of this qualitative study is to explore experiences and challenges of university students living with invisible disabilities.

Methods

Nine videotaped medical consultations with students, conducted at the health centre of a higher education institution in northern Chile, were analysed, drawing on the thematic analysis to organize the most salient themes.

Results

Three major themes were identified in the analysis, along with their subthemes: (1) experiencing overpowering symptoms, including variable, multiple, and severe symptoms; (2) facing medical, social, and academic barriers; (3) engaging in self-management behaviours, such as self-medication, self-treatment, changing therapies, and non-compliance.

Conclusion

As the healthcare system is mostly ineffective in diagnosing students with invisible disabilities as well as providing them with long-lasting help, the students often have to manage their conditions by themselves, without much success. It seems essential to promote the development of stronger links between health providers and universities to allow for early disability detection and awareness-raising programs within educational institutions. Further research should focus on strategies promoting effective support mechanisms to decrease barriers and increase the inclusion of these individuals.

KEYWORDS:

• invisible disabilities
• medical consultations
• experiences
• university students
• thematic analysis
• chronic conditions
• barriers
• Chile

Introduction

Invisible disabilities, which are common in modern societies, refer to “both mental and physical conditions that are not immediately noticeable by an observer” (C. K. Matthews & Harrington, 2000, p. 405), and the choice to disclose the disability remains with the individual (N. Matthews, 2009; Quinlan, 2014). They can be diverse and can include cognitive conditions, such as autism spectrum disorder, dyslexia, and attention deficit hyperactivity disorder (ADHD); long-term conditions, for example multiple sclerosis, chronic fatigue syndrome, juvenile diabetes, and epilepsy; or mental conditions, such as anxiety, depression, and distress (Fitzgerald, 2001; Oslund, 2014; Quinlan, 2014). Invisible disabilities can significantly impair normal life activities of an individual, including learning (Davis, 2005; United Nations, 2006). In this study, the focus is on invisible medical disabilities as specified in Table I.

Table I. Characteristics of Participants.

Participant number	Age	Sex	Major reported symptoms in the consultation	Reported diagnosis
P1	23	M	anaemia, fatigue, high cholesterol, digestive problems	no diagnosis
P2	23	F	headaches, panic attacks	mild borderline personality disorder, mixed headache syndrome, endometriosis
P3	28	F	suicide attempt, self-harm, fainting, sleeping problems, panic attacks, memory lapses	depression with suicidal ideation
P4	21	M	panic attacks, feeling anxious	anxiety and depression
P5	22	F	chronic diarrhoea	no diagnosis
P6	20	M	low mood, distress, feeling anxious	Type 1 diabetes
P7	19	F	vertigo, migraines, low mood, distress	depression
P8	20	F	cold sore, dandruff, headaches, feeling anxious	no diagnosis
P9	20	F	headaches, nausea, dizziness, tachycardia, feeling anxious	no diagnosis

A rise is being reported in the numbers of students with disabilities, especially hidden ones, entering university (Wolf, 2001). This brings new challenges to higher education institutions. Internationally, laws and statutes mandate inclusion for the disabled in all areas of life (European Commission, 2010; Shaw, 2006; World Bank, n.d.), and universities worldwide have incorporated support services for students with special needs (Ferreira Villa et al., 2014; Gibson, 2015; Oslund, 2014; Rubio Aguilar, 2017). However, students with invisible disabilities may experience difficulty navigating college more than their physically disabled peers, as they often do not disclose their condition and their needs remain unaddressed. They usually have to deal with symptoms of varying intensity throughout the academic year, which makes the impact on their studies unforeseeable (Mullins & Preyde, 2013). The students’ experiences are reported to be too often delegitimized: the students are frequently told that the problems are in their head, they are faking them, or they need to make more effort to fit in. Furthermore, they can be subject to forms of rejection, humiliation, and social disapproval (Ariel, 2016; Davis, 2005; Kreider et al., 2015; Martin, 2010; Mullins & Preyde, 2013; Pierre, 2016). When faculty members are sensitive towards the needs of the students, the impact appears to be positive. Nevertheless, negative reactions from faculty and peers, which often seem to be the result of lack of experience rather than malice, create reluctance to disclose disabilities for fear of stigma (Martin, 2010; Stage & Milne, 1996). Stigma is a socially constructed “mark of shame, disgrace, or disapproval that results in an individual being rejected, discriminated against, and excluded from participating in a number of different areas of society” (World Health Organization, 2001, p. 16).

In Chile, students with disabilities represent 0.6% of the total enrolment in tertiary education (Servicio de Información de Educación Superior, 2022). Although there are no statistical data regarding hidden disabilities among university students, the symptoms related to mental health problems, in particular anxiety and depression, and those associated with academic stress, are becoming more and more persistent (Cova et al., 2007; Florenzano, 2006; Micin & Bagladi, 2011; Rossi et al., 2019; Villacura et al., 2015). Chilean universities seek to follow the Ley [Act] N° 20.422, a law implemented in order to eliminate any form of discrimination based on disability, and to develop concepts associated with inclusion, though with different degrees of commitment (Valenzuela, 2016; Vásquez & Alarcón, 2016). The law mandates Chilean higher education institutions to provide support services, for example counselling or necessary adaptations in study materials and teaching strategies, so that students with disabilities can pursue different careers. The lack of support from higher education institutions results in a lower proportion of people with disabilities gaining access to it; and those who can access university encounter difficulties to continue and finish their studies, as only 9.1% of people with disabilities manage to complete the cycle of higher education, as compared to the 20% of the adult population without disabilities (Rodríguez & Valenzuela, 2019).

Understanding the nature of invisible disabilities is critical not only because of the prevalence of hidden, and in particular, chronic conditions, but also because of the difficulty in diagnosis and treatment (Fitzgerald, 2001). Many disabling conditions may be diagnosed in people in their 20s, while already at university (Demery et al., 2012; Kadison & DiGeronimo, 2004). Diagnosis can be triggered when symptoms prevent the student’s full participation in one or more areas of university life, due to their change to independent living and the particular social and cognitive demands of university, or because they are emotionally distressed and not coping with, for example, pressures to succeed (Demery et al., 2012; Kadison & DiGeronimo, 2004; Pedrelli et al., 2015; Wolf, 2001). The university clinic is thus an important place to explore the diagnosis and management of invisible disabilities in young adults. In this study, students with an invisible disability are understood as those who have a hidden medical condition or present medically unexplained or undiagnosed symptoms, as long as they feel their mental or physical complaints impair their normal life activities. Previous research has mainly focused on identifying barriers and facilitators to inclusion in higher education (Villouta, 2017). The objective of this study is to give primacy to the experiences and challenges of living with invisible disabilities faced by university students in Chile and disclosed in medical consultations.

Data and methods

The data are nine videotaped medical consultations conducted at the doctor’s surgery at the health centre (área de salud) of a higher education institution in northern Chile. The data were transcribed verbatim and the transcriptions of selected extracts were translated from Spanish into English. The data collection started in December 2018 and continued until March 2020. The process was impeded by two student strikes, first following the feminist movement in 2018 and then civil protests in October 2019 in Chile, which led to a temporary closure of the university and the suspension of any face-to-face activities. Finally, the COVID-19 pandemic led to full lockdown. What may have further inhibited others from participating in the study was the fear of stigma and the conviction that disclosing a disability would not change anything.

The consultations lasted from 15 to 50 minutes. A sample of three male and six female students, aged 19–28, who self-identified as having an invisible disability, participated in the study (see Table I). In our sample, five students had been diagnosed and treated by various medical professionals on previous occasions and four students had no specific diagnosis. All the students reported various physical and mental symptoms which had lasted at least 1 year and which had affected their life and academic performance. These involved: fatigue, high cholesterol, digestive problems, headaches, panic attacks, fainting, memory lapses, chronic diarrhoea, vertigo, nausea, cold sores, dandruff, tachycardia, low mood, and anxiety.

The recruitment procedure was conducted by the university health centre and the program advisor of the School of English. Students were invited to participate in the project either directly or indirectly, through a recruitment announcement. Students were informed about the project and about their right to withdraw at any time. The nine participants (P1–P9) gave their written consent for videotaping the medical consultation. The study was approved by the university ethical committee (Protocol 041/2018 – Report 042b/2018). The interviews were conducted by two general practitioners (GPs), who did not follow any specific standardized interview guide, but provided regular medical consultations in line with the model adopted in primary care (Dominguez-Cancino et al., 2020). No other observers were present during the consultations.

The medical consultations were analysed using the standard thematic analysis approach. Thematic analysis enables identification and in-depth analysis of repeated patterns (themes) across the dataset, with nuanced interpretations of data. It consists of the following steps: (1) familiarizing yourself with the data, (2) generating initial coding categories, (3) searching for themes, (4) reviewing themes, (5) defining and naming themes, and (6) producing the report (Braun & Clarke, 2006, p. 87). To enhance reliability of the project coding, multiple data coders participated in the analysis of the data sets in order to ensure a broader and more complex understanding of the phenomenon (Given, 2008; Tong et al., 2007). Both authors and four trained students involved in the project read and reread the transcriptions to become familiar with the content. Next, the students independently coded the interviews in pairs, generating initial codes and then repeatedly met with the first author to discuss the derived codes. To increase the rigour of the research, software program NVivo 12 plus was used to help manage and analyse the collected data. The codes were next compared, and sorted into potential themes through an inductive analysis. To strengthen the trustworthiness and credibility of data analysis, the authors continued to discuss the coded interview iteration, refining the themes and the overall story to ensure coherence until consensus was reached and three major themes were identified. To illustrate the experiences of the students, texts were finally extracted from the interviews and arranged in a manner that allowed them to form an “analytic narrative” (Braun & Clarke, 2006, p. 93). With a sample of nine participants, it should be acknowledged that this study focuses on exploring, in detail, the ways in which individuals make sense of their invisible conditions. The findings are specific to this context and group.

Results

In the thematic analysis, three major themes were identified that encompassed a large number of subthemes (see Table II): (1) experiencing overpowering symptoms, (2) facing barriers, (3) engaging in self-management behaviours.

Table II. Thematic map.

Themes	Subthemes	Code
Experiencing overpowering symptoms	Variable symptoms	description of symptoms, varying intensity
	Multiple symptoms	different symptoms
	Severe symptoms	progression of symptoms
Facing barriers	Medical	lack of diagnosis
	Social	lack of understanding on the part of teachers and peers
	Academic	academic workload
Engaging in self-management behaviours	Self-medication	medication
	Self-treatment	uncompleted or intermittent treatment
	Changing therapies	decisions about treatment
	Noncompliance	lack of concern

Experiencing overpowering symptoms

The invisible symptoms the students revealed in the consultations were multiple, overwhelmingly negative, and variable. They varied in intensity, duration, and quality. The students frequently linked the onset of the symptoms to university stress. They used detailed language, vivid metaphors, hyperbole, and gestures to describe their symptoms and the ongoing or recurrent character of their problem.

Variable symptoms

In the following extract, the student (P2) describes having headaches of varying intensity, pointing at different parts of her head and using gestures. She had been diagnosed with mixed headache syndrome and mild borderline personality disorder; yet, her medical exams had not shown any evidence and treatment had not had any positive results. At the time of the consultation, she admitted to self-medicating.

GP: It’s not always the same?P2: No, not always the same. It hurts like a tight headband; my temple hurts; it hurts me like it’s in my eyes and they are heavy; and it also hurts me, it hurts me, like when it’s cold, I feel as if the pain grabs you from below; it grabs me all this, it’s like you feel cold; and also the heat, it’s like suffocating and also starts like this and starts as if it squeezes you. I also had a pain, I feel like someone’s stabbing me with a knife, and it’s pushed in and it’s buried too, also that … That’s why I told you that it was mixed, because they are like tensional …

In the absence of medical evidence, it is challenging to communicate invisible symptoms and to prove them to be real, especially if they continually change. The student’s account is detailed and abounds in figurative language, which she used to vividly describe her pain (for example, I feel like someone’s stabbing me with a knife), and, possibly, to seek legitimization of her symptoms.

Multiple symptoms

Other students mentioned several different and debilitating symptoms. In the next example, the student (P9) reports her symptoms to the GP for the first time. She had not been diagnosed with any medical condition and she was not taking any medication at the time of the consultation. She described how she had been experiencing a number of medically unexplained symptoms for months.

GP: Well, tell me, what seems to be the problem?P9: I came here because I’ve been feeling like… very anxious for months, like I’m very eager to eat everything…Besides, I’ve had headaches, which is not really normal for me…and, dizziness, because I’ve never been dizzy in my life.GP: Okay, do you mean you feel things around you are spinning or do you feel like you’re going to vomit?P9: No, It’s like I lose my balance and…GP: Okay, does it go along with headaches or independently?P9: Mhm, yeah! It comes together [with the headaches] and besides, eh, well, I’ve suffered from panic attacks.

The student’s problem presentation was chaotic and lacked a chronological order. In this short excerpt, she reported experiencing multiple symptoms, often occurring simultaneously: dizziness, nausea, headaches, and panic attacks.

In general, most patients mentioned at least two symptoms possibly associated with their invisible condition (see Table I).

Severe symptoms

Another student (P3), who had been diagnosed with suicidal depression, reported severe symptoms in the consultation, including a suicide attempt. She also admitted to experiencing a traumatic event when she was 14, but the topic was not explicitly discussed. In the following extract, she recounted being videotaped by a friend when she had a fit and described in detail what she had seen on the video.

GP: And what happens to you then?P3: I was once videotaped and that’s what I saw: I fell down.GP: Did you pass out?P3: No, I threw myself on the floor and started crying, I started to hit myself, felt the sweat and after that I got some sort of superpower and they tried to grab me, I was stronger than three people, three men, and after that, I was like…I passed out.GP: And do you get violent; do you happen to say things?P3: But only to myself, I didn’t hit anybody else.GP: And what do you do? Do you hit yourself?P3: It was on one of those occasions that I broke a bottle and stabbed it into my leg.GP: OK. And you don’t remember anything?P3: No.

In her narrative, the student mentioned very sudden and severe symptoms, such as passing out, crying, and self-harming with a broken bottle. After such fits, she didn’t remember anything. In a similar way to P1, P3 may seek to legitimize her invisible symptoms in the consultation by drawing on the evidence collected by third parties.

To sum up, in their accounts, the students shared their experiences of living with multiple, significantly overwhelming symptoms of varying intensity. They reflected that these symptoms prevented them from carrying on with their daily routine, and had a negative impact on their academic performance.

Facing barriers

The majority of students with hidden disabilities pointed to difficulty achieving academic success (P1, P2, P3, P4, P6, P7, P8 and P9). Some mentioned loneliness and difficulty establishing relationships with others (P3, P4, P6). More specifically, they expressed a fear of being themselves in front of others, pointing to the lack of understanding of their condition on the part of friends or family. The difficulties the students described in the consultations were identified as medical, social, and academic barriers to full participation in society.

Medical barriers

The analysis of the students’ accounts revealed the ineffectiveness of the Chilean healthcare system in diagnosing and treating invisible conditions. The government-managed public sector provides care for most of the population (82%), especially for those who are on a low income and chronically ill or disabled (Crispi et al., 2020). Family doctors are not mandatory and patients do not need a referral to specialists. They choose doctors based on their symptoms and the doctor’ s availability. This, in turn, makes it difficult to develop a long-term doctor-patient relationship, which is fundamental for treating chronic conditions. Most students reported having a long history of symptoms, and despite many medical visits, they were not diagnosed properly or they did not receive the appropriate treatment.

One of the students (P5), who had had her gallbladder removed, was informed by her surgeon that she would experience diarrhoea for approximately a month after the operation. However, she reported suffering from chronic diarrhoea for almost a year. In this extract, she talks about her tireless search for the right diagnosis and the impotence of the healthcare system: despite numerous visits to various specialists, her symptoms endured.

P5: I have fatty liver, but that does not make me go to the bathroom more often, so they don’t know; and I go from one doctor to another, and another. I even travelled to Santiago and they don’t know what it may be [Santiago, the capital of Chile, is 2 hours away from Antofagasta by plane, but it is said to have the best specialists, so people often go there in search of better treatment].GP: Have you seen a specialist? What kind?P5: Gastroenterologist; I have also seen an internist; I was taken to a psychologist also to see whether it could be related, but no one knows what’s going on.GP: And the surgeon that operated on you … did you see him after the operation?P5: Yes.GP: Right, and he doesn’t know either?P5: No.GP: Right … And did he tell you that a gallbladder removal surgery can cause episodes of diarrhoea?P5: Yes, he told me that could happen for a short period of time, not too long, but it’s been almost a year since the operation.

In the next excerpt, the student (P2) complained about her long-lasting, strong headaches, and ineffective medication:

GP: What seems to be the problem?P2: Very strong headaches … they usually give me medication, but the pain does not go away and it continues to hurt, it still hurts.

The pain continued despite doctors prescribing her medication. Consequently, the student stopped taking prescribed medication.

Another reason for stopping treatment was lack of financial resources. This issue, though not frequently mentioned in this group of participants, was mentioned by P3, who pointed to limited financial resources as the major reason for the lack of treatment:

P3: I started to visit the psychologist less frequently … also because of money issues … because I was spending too much money, so I cut the treatment and for the same reason, I started to have personal issues again … I lost my job and got another one, I had other symptoms that were like … a suicide attempt.

Yet, the student also discussed terrible consequences of stopping the therapy and treatment, namely, the outbreak of new symptoms that led to a suicide attempt.

Social barriers

Some students (P3, P4, P6) expressed difficulty interacting with their peers and reported feelings of insecurity with regard to being good company for others. They also stressed the need to keep their condition secret for fear of being misunderstood or stigmatized by their family, social network, or teachers. In the following excerpt, the student with anxiety and depression (P4) explains how he felt:

P4: It was hard for me to start a conversation. I was sometimes telling myself: Listen, I do not want to go out because I do not want to talk, I do not want to because I feel that I do not have a topic to talk about and I feel that people will get bored about what I tell them, etc … . What happens to me is that my family or many friends that I have do not totally understand what mental problems are.

The student talked about his insecurity, which accompanied him while going out or talking to others, and complained about lack of understanding on the part of his family and close friends.

Beside the difficulty of socializing with peers, two students reported they had not disclosed their condition to teaching staff due to stigma. P3 talked about a feeling of shame accompanying her whenever she experienced depressive symptoms, while P6, who had Type 1 diabetes, expressed his fear of teachers’ attitude towards his going out during tests, whenever his sugar level got too low.

GP: Why didn’t you ask for help with the university support services?P3: Because I feel…I have always felt ashamed of what happens to me.GP: Is studying difficult now?P6: Yes, my biggest fear is to get low [blood sugar] during a test … and be unable to go out, because they would think I want to cheat in the test.

All in all, a few students in our study experienced feelings of shame and fears of stigma which hindered their social interaction and studying.

Academic barriers

All the students expressed the negative influence of their hidden condition and associated symptoms on their academic performance. In particular, they pointed to feeling fatigued and having difficulty focusing in class, getting lower grades, staying up late to study, having difficulty waking up and going to the university, failing specific courses, and, finally, suspending their studies. Some of them noted that before the onset of the disability, which in some cases coincided with the beginning of university studies, they were able to get good marks effortlessly and some were even at the top of the class, whereas now they struggled with anything related to their studies, especially during tests and exams (P2, P6, P7, P8, P9).

One of the students (P9) linked the onset of her panic attacks to tests and exams in one particular course during her major:

GP: OK, and how often do you have these panic attacks?P9: Generally, 1 or 2 days before the tests.

Another student (P8) described how her cold sore appeared to be related to a specific course that she was taking for the second time. She also mentioned other symptoms, such as headaches, dandruff, and feeling anxious. The student had never consulted about her symptoms before, so she had no specific diagnosis.

P8: And now at university, I got this herpes and it always appears when I have a test in that class.GP: OK, and is it with this class in particular? Only with that one class?P8: Yes, this is a course I failed in the first term, the first year.

In sum, the student linked the outbreak of herpes to university stress.

In the next extract, the student with diabetes mentions problems with concentration. Most notably, he contends that his performance at school was significantly better than at university:

GP: And what about the academic part, for example?P6: I have noticed that paying attention is harder than before.GP: Right.P6: I have had to study twice as much. Before I didn’t use to stay up late to study; now I have to do that some nights.

On the whole, students with invisible disabilities signalled difficulties achieving academic success and the necessity of putting more effort into studying, which often meant studying more years than on average. One of the students (P2) stated she had to suspend her studies eventually:

P2: I had to suspend my studies, because apart from that, I was diagnosed with a disease … I found a psychologist from here [the university] and they say that maybe it’s mild BPD [borderline personality disorder].

The majority of the students (P2, P3, P4, P6, P7, P8, P9) also reported how their academic workload had exacerbated their physical symptoms and caused stress and anxiety. This situation prevented the students from coming to the university and participating fully in classes. The following extract illustrates how the student (P7) diagnosed with depression was prevented from going to university due to the overwhelming symptoms of nausea and headaches. Her feelings of anxiety might have been additionally heightened by the sudden changes at the university due to social unrest in Chile in 2019, such as the cancellation of all university activities, student protests, or subsequent adjustments to the curriculum.

P7: I was vomiting, I had headaches that wouldn’t even let me come to the university, or if I made it, I had to go back home because the moment I got there, I started to vomit. … And then, by the time I realized I suffered from something, university was a stress factor.

In the next excerpt, the same student talks about marks and the related feelings of anxiety. In Chile, a 7.0-point grading scale is used from primary through tertiary education. The lowest grade is 1.0 and the highest grade is 7.0, with 4.0 being the minimum passing grade.

P7: Yesterday or the day before, I met some friends to work on a project and I … had … they started to talk about some class contents, I think it was linguistics and they said something like: “ah this test is … ,” the test we had had before the social outbreak, “this test is worth 50% of the course’s final grade,” and my hands started to tremble, my left eye started to blink and I said: “Stop talking about that right now because I got a failing 3.5 in that test” and for me that 3.5 meant 50%, I was like … I felt like dying.

Scoring so low meant failing the course, because not even a 7.0 in the remaining 50% could average the passing grade of 4.0. This situation provoked somatic symptoms in the student, such as trembling hands and eye twitching.

Although the students sometimes mentioned they had met with understanding on the part of their teachers, in one extreme case, the student (P3) revealed she had been so scared of her teacher that it provoked vomiting:

P3: And the teacher who I had to take up a course with … we sort of had several arguments that had nothing to do with the academic work, but with our personalities. And I was scared of her, so I came back with that predisposition … I had to speak in class and I felt like: “I’m gonna be sick.” And I started to tremble; I would vomit, sweat, vomit, I had to go to the toilet to vomit three times during a class. It was too much.

In the following excerpt, the same student talked about one of her teacher’s attitude and the requirement to present written proof of her invisible disability.

P3: Yes, later I spoke with the teacher of that course and she was very understanding and told me: “If you have a medical condition, you need to tell me because I may make a comment or say something that may hurt you; and these things are more delicate.” At that moment, she was very understanding; she warned me though, that I needed a medical certificate that showed “you really suffer from this.” I asked my psychologist to write a report for me; I gave it to all my teachers, but I felt no more support other than that.

Despite her unwillingness to self-disclose, she eventually decided to follow the teacher’s suggestion and presented the medical document certifying her disability to all her teachers. However, she concluded that she had not received any support afterwards.

In sum, invisible disabilities caused various problems in students’ personal, social, and academic life. In the consultations, the participants signalled multiple medical, social, and academic barriers. First of all, due to the limited access to medical and psychological care, or the inability to find the right diagnosis, their treatment was ineffective most of the time. Furthermore, according to the students, their shame and a fear of stigma often prevented them from communicating effectively with their peers and teachers and disclosing their disability. Finally, academic barriers, such as the stress and anxiety accompanying certain courses, as well as the academic workload and the teachers’ attitudes, had a negative impact on their academic performance and hindered achieving academic success.

Engaging in self-management behaviours

Most students (P1, P2, P3, P4, P5, P6) admitted to having tried to manage their symptoms for a long time by consulting different doctors and therapists, and following medical recommendations. Yet, since the medication prescribed by doctors turned out to be mostly ineffective, the students have had to learn to cope with the symptoms on their own. Likewise, those who had never consulted a doctor about their symptoms (P7, P8, P9) talked about their own coping strategies too. In light of lacking medical help, some students acknowledged that they had started to read about and investigate their symptoms, to the extent that they could provide explanations for symptoms, lay alternative diagnoses, or reasons why they decided not to take the prescribed medication.

Self-medication and self-treatment

All the students except one reported managing their disabilities themselves, frequently by self-medicating, for example taking over-the-counter medication, or self-treating. In the following excerpt, the student with the mixed headache syndrome (P2) describes how she had to decide when and how much medication to take, depending on the level of anxiety or distress she felt.

P2: I take Ravotril to calm my nerves down … like when I have tests, when I have…I…I know that it calms me down, so when I am like that, a bit like that, I take a quarter pill or something like this.GP: What dose of Ravotril?P2: I have 2000 mg, but I take …GP: You don’t take that on a daily basis, do you?P2: Occasionally.GP: Only when you need it?P2: Right, but there are periods of time when I am really stressed out and then I take it on a daily basis. And sometimes studying makes me more stressed. At the university.

In her account, she clearly delimited the times when she deemed it necessary to self-medicate, which was especially during tests at university.

The next extract illustrates how another student (P8) resorted to self-treatment in order to cope with cold sores, which appeared always whenever she sat a test in a specific university course. Because she had been presenting with symptoms since her childhood, she had learned how to treat them.

P8: I apply Acyclovir, but now, every time I get it [cold sore], it takes longer to …GP: …to disappear?P8: … to disappear, and I’ve never been to the doctor to treat it.

However, it should be noted that by applying the medication without seeing a doctor, she was addressing the visible symptom of herpes on her lips, but not the underlying cause of her possibly anxiety-related medical condition.

Changing therapies

The students also admitted to making decisions about therapy: whenever they were not satisfied, they changed therapist and searched for more successful therapy. One of the students in our study (P3), who had experienced a trauma, wasn’t able to tell her psychiatrist about it. This was one of the reasons for quitting therapy. Another reason for the change of therapist was the prescription for more medication. This is illustrated in the following excerpt.

GP: And did you go back for a consultation with your psychiatrist? Did you tell her?P3: I switched to another psychiatrist, because that doctor wanted me to take the pills with a higher dosage.GP: and?P3: and I didn’t want to take the pills. Then I went to a psychologist who offers alternative therapy. I started treatment with her, but she told me I shouldn’t quit the pills the psychiatrist had prescribed me, but yes—we were going to start working on techniques.

The student did not want to take more pills, so she decided to look for help elsewhere.

Noncompliance

The students also made judgements about the relevance and suitability of the prescribed medication. For example, in the following extract, P1 discussed with the GP the results of his previous medical exams (high cholesterol levels) and the relevant medication for cholesterol and anaemia prescribed by another doctor some months before. As this student did not succeed in finding the right diagnosis after visiting various doctors, he decided to take more control of his condition by learning and researching it by himself. This new knowledge seemed to encourage him to choose what he believed was appropriate for him. He expressed his lack of concern for treating one of the symptoms:

GP: Are you taking the medication the doctor prescribed?P1: She prescribed one for cholesterol and for …GP: … for the anaemia.P1: The one for cholesterol—I will not take; and the other … I … I haven’t … decided yet … I would like to …GP: So, you are not taking any medication?P1: No.GP: Why?P1: I am not concerned about cholesterol.GP: Did she tell you that you had 406?P1: Yes, she told me.GP: And do you know how much is normal?P1: Normal is like 200 and something, but I don’t mind that.GP: That is very high!P1: Yes, I know.GP: And you are not worried about that? Why not?P1: Because cholesterol is not like … it doesn’t reveal that much … besides, that is only a number of total cholesterol, which is not really measured … calculated … . And also … besides, that was one exam, the numbers may vary from one to another: for instance, in the second exam it shows that the level decreased …GP: … to 362. [7 lines omitted]GP: What explanation do you give to that?P1: They are not, umm, the other levels are normal and, in general, I eat things that are rather healthy, I don’t drink alcohol, I don’t smoke, I don’t have bad habits so…

Despite his test results, he tried to justify why high cholesterol would not be a problem by assuring the GP he had a healthy diet and good habits. Overall, the student showed skilful though inaccurate interpretations of lab results and decided not to comply with specific treatment.

On the whole, eight of nine students admitted to making decisions about managing their condition: either by self-medicating, self-treating, changing therapist, or not complying with the prescribed treatment. Lack of diagnosis and/or effective treatment correlated with the students’ dissatisfaction with the management of the condition as symptoms endured, and in some cases became more severe. In contrast, the only student complying with the prescribed treatment, the student with diabetes (P6), reported other types of nonmedical issues related to this condition in the medical consultation, focusing, in particular, on the social dimension of his disability.

Discussion

This study has explored the experiences of living with invisible disabilities of Chilean university students as disclosed in nine medical consultations. The major finding of this study is that living and studying with an invisible disability may be challenging for students in many ways as their disabilities and associated symptoms affect various aspects of the students’ lives. Three major themes were identified through the thematic analysis: experiencing overpowering symptoms, facing barriers to full participation in society, and engaging in self-management behaviours. In particular, it has been demonstrated that the students presented multiple and debilitating symptoms of varying intensity, they frequently managed their conditions by themselves, and encountered significant medical, social, and academic barriers. These barriers played a major part in their accounts, underscoring the strong interaction between the hidden disability and the challenges imposed by society (United Nations, 2006), irrespective of the fact that they were not the primary focus of the medical consultations.

Many of the findings share similarities with themes identified in previous studies on hidden disabilities, especially in those reporting on lived experiences of students with mental health issues as well as various chronic and contested diseases (Mullins & Preyde, 2013; Rebman et al., 2017). They point to the persistence of powerful, yet often questioned, symptoms accompanying invisible disabilities (Demery et al., 2012; Sturge-Jacobs, 2002). When medical evidence is lacking and symptoms are invisible, validating these symptoms or testifying to their legitimacy has frequently been found challenging for the afflicted, as revealed in a large number of studies (Demery et al., 2012; Harter et al., 2005; Japp & Japp, 2005; Mullins & Preyde, 2013; Paxman, 2021; Sowińska, 2018).

As the Chilean healthcare system seems to be largely ineffective in diagnosing or treating their conditions and frequent medical visits do not bring any positive results, the students tended to engage in decision-making processes regarding their disabilities, either managing their long-lasting symptoms on their own by self-medicating or self-treating or not managing them at all (see also Sowińska & Lazzaro-Salazar, forthcoming). One of the possible explanations for this may be the view that the management of a chronic condition depends almost exclusively on patients. This is often associated with discourses of blame, which seem to burden the patient with the responsibility for their own health management (Rebman et al., 2017; Walton & Lazzaro-Salazar, 2016). Self-medication practice has been found to be highly prevalent among university students, especially in economically deprived regions (Altamirano et al., 2019; Ayala-Servín et al., 2020; Ferreira Souza et al., 2011). It has also been shown that people who experience symptoms that are difficult to pin down and treat are more prone to resorting to their own coping strategies (Sowińska & Czachowski, 2018).

Among the barriers described by the participants, we find that overpowering symptoms, such as fatigue, nausea, or panic attacks prevented them from coming to classes (P1, P2, P7); the students also reported they could not cope with the academic workload and stress provoked by specific courses, tests, and exams (P2, P3, P7, P8, P9). As a result, they often missed classes, failed courses and, in some cases, had to suspend their studies (P2, P3). On the other hand, the students noted that the symptoms which accompanied their disabilities were exacerbated by the academic workload. These findings concur with and extend earlier studies, which also point to the negative impact of the academic workload and stress on students’ wellbeing (Fleming et al., 2018; Goode, 2007; Mullins & Preyde, 2013). For instance, a study by Fleming et al. (2018) identified disabilities, such as ADHD or depression, as significant predictors of academic distress.

The fact that the disability is not easily identified by the observer, and that it is normally not easily disclosed to others, can lead to misunderstanding, lack of support, or even judgements from peers and teachers. Some students in our study mentioned that they isolated themselves since they believed that nobody would understand them and they expressed a fear of disclosing their condition to others due to shame and stigma. Other students pointed to stress and anxiety caused by particular teachers and particular courses (see also Sowińska, 2022). It is, then, noteworthy to consider how teachers’ lack of awareness or judgemental attitude may affect students with invisible disabilities as this may have a huge impact on the students’ actions, active involvement in decision-making regarding their health or studies, or academic performance. Previous studies have demonstrated that negative attitudes towards individuals with disabilities may restrict their participation in higher education (Couzens et al., 2015; Hong, 2015; Moswela & Mukhopadhyay, 2011). Lack of support can result, in turn, in poorer management of university commitments (Demery et al., 2012; Martin, 2010). On the whole, it may be concerning that students in our study rarely mentioned support or accommodations provided by their teachers or the university. Although the students admitted to being reluctant to disclose their condition to their teachers, they at the same time expected more support and understanding from them.

Conclusion

This is a unique qualitative study exploring Chilean student patients’ perspectives on living with invisible medical disabilities. By facilitating a better understanding of the experiences and challenges faced by students with hidden disabilities, this study may contribute to the development of strategies to decrease barriers and increase the inclusion of individuals with disabilities in society.

The themes identified through thematic analysis highlight many of the challenges faced by students with invisible disabilities in achieving academic success and navigating through their college life. The important point that our research makes is that students with invisible disabilities do not receive adequate help. The healthcare system is highly ineffective in diagnosing and treating these students or providing them with long-lasting help. Lecturers and instructors also seem to fail to cater to these students’ needs, either for lack of information due to nondisclosure of conditions, or lack of strategies and skills on the part of teachers. Further research should focus on developing strategies to facilitate an open and accessible university environment, promoting effective support mechanisms, and facilitating coping with disabilities.

It should be acknowledged that the study has some limitations as it was based at a single university health centre facility and it had a small sample size; therefore, the experiences of students with other hidden disabilities at different institutions may vary. Research including a wider sample of participants should be conducted to deepen the knowledge about barriers faced by the students and to provide insight into students’ own resources in coping with these barriers and managing their needs.

Nowadays, universities face an enormous challenge and it is relevant and timely to implement support services that allow for a balance between academic demands and students’ wellbeing. It seems essential to promote the development of stronger links between health providers and universities to allow for early disability detection and awareness-raising programs within educational institutions. They could help to provide teachers and peers with education and training in disability inclusion, encourage students with disabilities to seek support, and contribute to tackling academic distress before it affects students’ wellbeing. Invisible disabilities are complex and multifaceted and thus we need to approach them holistically, involving every member of the community.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

The work was supported by the Agencia Nacional de Investigación y Desarrollo [Fondecyt 11191027].

Notes on contributors

Agnieszka Sowińska

Agnieszka Sowińska is working in the Department of Experimental Linguistics at Nicolaus Copernicus University (NCU), Poland, and also remains affiliated with the School of English at Universidad Católica del Norte, Chile, as Associate Professor. She has been collaborating with GPs within the European General Practice Research Network, Research Centre for Cognitive Science at the University of Talca, Chile, and the Interdisciplinary Centre for Modern Technologies at NCU, Poland, conducting various projects and publishing in linguistics and health communication. Her present research focuses on the discourse of students with invisible disabilities.

Rosa Pezoa Tudela

Rosa Pezoa is a lecturer at the School of English, and former ELT Programme Advisor and Academic Coordinator at Universidad Católica del Norte. She holds a Master´s degree in Applied Linguistics and a Bachelor´s degree in Education from Univesidad Católica de Chile. She is currently completing her PhD in Applied Linguistics at the University of Auckland, New Zealand. Her research interests are EAP and source-based writing, and the discourse of students with special educational needs and invisible disabilities.