Learning objectives

1. To analyse the opportunities and implications of diagnosis for students with mental health difficulties and gain insights into the longer-term implications of having a psychiatric diagnosis.

2. To identify the risks and challenges of disclosing a mental health difficulty for students studying professional courses, such as social work or mental health nursing, that are underpinned by “fitness to practise” requirements.

Introduction

The inclusion of students with mental health difficulties in higher education in Ireland is currently based on a model of disability support. The opportunities and limitations of this model have been discussed in the previous chapters, as have efforts to move towards a more universal design for learning approach to inclusion. This chapter “parks” these important, albeit theoretical, debates and instead focuses on the experience of students whose engagement with higher education is facilitated, indeed “held together” (John), by disability support. It begins by exploring the experience of receiving a psychiatric diagnosis – an official prerequisite for access to supports and resources under the Fund for Students with Disabilities (FSD). It then examines student experiences of disability support itself – the aspects they availed of and “the practical stuff” (Mai) that supports them in achieving their academic goals. Finally, this chapter considers the experience of students who are studying a mental health-related course and the particular challenges they face in navigating the territory between lived experience and fitness to practise.

Diagnosis

All 27 students who shared their experiences of navigating higher education with a mental health difficulty as part of this book had received a formal diagnosis. Thirteen spoke at length about what it was like to receive a diagnosis, what it meant, and how it altered their experience. Students described how a diagnosis validated their distress. Ashley described how receiving her diagnosis of bipolar disorder “gave my difficulties, that I think were always belittled, some credit”.

Sophie spoke about she had “to fight very hard” for a diagnosis and for validation. She described how, upon initial assessment as a teenager, she “met some of the criteria” but not enough to receive a formal diagnosis of depression. She said she “found it very difficult throughout that time because I felt that everything that I had struggled with wasn’t validated”. She felt that her experience “justified some kind of medical reason as opposed to ‘you just can’t cope with your life’”. Sophie described the “relief” when three years later, at 17, she was diagnosed with depression: “it was nice to have that feeling of validation and acknowledgement”. Mary described how a diagnosis helped “other people take [her anxiety] a bit more seriously”: “I feel it’s a relief when I can say to someone, I’m feeling really anxious at the moment” (Mary).

A diagnosis also offered students a way of making sense of their experiences. Alicia described how “it was better than just thinking you are actually insane” while J. D. said that knowing what it was “named the monster”: “it wasn’t as scary anymore because it had a name”. Ashley is grateful that “I now know what is going on” and that “there’s a reason for it and it’s not just my fault”. This sense of “its not my fault” was also hugely beneficial for Claire:

In addition to validating their experiences, offering some meaning, and a sense that “it’s not just my fault” (Ashley), students acknowledged that a diagnosis was an essential step in accessing support: “I didn’t care what he [psychiatrist] said to me, you know, I just wanted him to do something for me” (John).

Some students expressed concern about diagnosis. Sarah suggested that “once you have one diagnosis you end up with ten – every time you go in you get a different one”. A diagnosis, for Sarah, is quickly followed with a corresponding prescription; “every time you go to the doctor you get a different one and you’re on different medications”. Lauren also described receiving multiple diagnoses: “they throw them all at you”. She disagrees with her current diagnosis of borderline personality disorder: “I’m like, you literally give that to everyone”.

These concerns are further compounded by the fact that, over the longer term, psychiatric diagnoses are notoriously difficulty to shed. Even if a student has moved through a period of distress, their medical and other administrative records will continue to be marked with disorders that may limit their ability to, amongst other things, obtain a mortgage (McInerney, 2021), access life insurance (Mind, 2022), secure a visa to certain countries such as Australia or the US (Australian Government Department of Home Affairs, 2021), and/or pursue certain careers. These careers include professional careers such as medicine or the military where a diagnosis may undermine a person’s application for selection or fitness to practise (Government of Ireland, 2007; Ministry of Defence, 2018). However, for those students who shared their experiences, the validation, meaning, and access to much-needed support provided by a diagnosis was at the forefront of their minds. These supports were accessed through their university disability support service.

Disability support service

Every university or higher education institute in Ireland has its own disability support service. These services are staffed by skilled disability support officers who are tasked, primarily, with administering the Fund for Students with Disabilities (FSD) but, professionally, with supporting students with disabilities to engage with and succeed in higher education. Anecdotally, disability support staff would say that as the demand for disability support increases (an increase of 273 per cent in 13 years (AHEAD, 2023)), ever greater proportions of their time are devoted to administration, at the expense of one-to-one time with students themselves. This is compounded by the fact that the FSD does not provide for the salaries of the disability support officers who administer the fund and these roles are, instead, the responsibility of universities to fund amidst a crisis of underfunding (Irish Universities Association, 2023). Despite these challenges, university disability support services provide an effective and, as described by many below, essential service to students with mental health difficulties.

Louise described how her consultant psychiatrist “advised” her to register with her college’s disability service. She says, “I didn’t know what to expect from the disability”, and when, during her first meeting with the disability co-ordinator, he asked her “what supports are you looking for?” she didn’t feel that she needed any.

John, in contrast, says that without the various supports available to him through his college disability service “my life would fall apart within 24 hours”. He attends the college GP “on a regular basis” and receives one-to-one academic writing support which “makes a huge difference”. John puts his successes in college “down to the people around me” as well as his own effort and determination: “I’m merely an individual that can’t function without the help of other people”.

Mai also says, “I think I’m doing so well because the disability service is there”. Through her university’s disability support service Mai is able to access the support of an occupational therapist who helps her with “the practical stuff” around drawing up study timetables and breaking down assignments into manageable chunks. Students who were able to access the services of an occupational therapist service spoke very highly of the support it offered. Joseph, Greg, Mai, Fiona, and Millie each spoke about how “helpful” occupational therapy was.

Other supports mentioned by the students as being beneficial included access to a separate, smaller, exam centre; access to quiet spaces on campus where the students can take time out; “library privileges” (Sophie); and an additional “printing allowance” (Millie). A separate exam centre seemed particularly important for the students: “you don’t have to go to the RDS [exam centre] where there’s like 3000 people. It’s a small room with 20 people … it makes a huge difference you know” (Joseph).

Students who entered university through the DARE scheme were encouraged to register with their university disability service as soon as they accepted their college place. Others were referred to the service by their tutors or other academic staff members; the student counselling service; their university psychiatrist; and/or their own psychiatrist/mental health team. Some students were encouraged to register with the disability support service upon returning to college after a period “off books” [officially off the college register for a period of time] due to mental health difficulties.

Perhaps the greatest value of being registered with their college disability service, one that emerged repeatedly in the students’ narratives, was the sense of reassurance or “comfort” (Millie) that being registered offered them; a sense of knowing there is a port should they ever encounter a storm.

Studying a mental health related subject as a student with a mental health difficulty

Many students with experience of distress are, perhaps understandably, interested in the subjects of mental health, psychology, social work/social studies, or mental health nursing. This is often motivated by a desire “to say I understand it” (Adrianna) and/or a desire to “use what I’ve learned to help other young people” (Niamh). The experiences described below are set against a backdrop where the rights of a person to study or work in an area of their choosing are offset against professional “fitness to practise” standards set by professional registration bodies in psychology, social work, and mental health nursing (Campbell et al., 2022; Goldberg, Hadas-Lidor, and Karnieli-Miller, 2015; Manthorpe and Stanley, 1999; Stanley et al., 2011). For those students who disclose their mental health difficulty, and access support for a university disability support service, the support they receive is tinged with the risk that it might comprise their fitness to practise or “professional veneer”, as Mary puts it. This section explores, firstly, students’ interest in studying a mental health-related course and their desire to help other in similar situations to theirs. It then visits the experiences of those students who are negotiating the transition from service user to service provider – sometimes, as is the case for Louise, in the same mental health service. Finally, it considers the wider implications for students of being identified as having a mental health difficulty at this formative juncture in their professional lives.

Ten of the 27 students who participated in this research were studying a mental health-related course. Six were studying psychology – three at undergraduate level (Adrianna, Thomas, Sophie) and three at postgraduate level (Kate, Mary, Niamh). The remaining four were studying mental health nursing (Faye, Louise, Mai) and social work (Annie).

Adrianna spoke about how, for her, studying psychology is a means of getting the “qualification” to back up the knowledge and understanding she has gained through experience: “being able to say ‘I understand it’”. She was drawn to the area because she feels that a therapeutic “relationship was one of the most important things in my life … and [I want to] give back a little of what I’ve been given”. She says that this “sounds soppy” but, unlike her fellow psychology students, Adrianna hopes to enter the profession with the understanding that she “can’t really help people” rather “be there with people and help them get through what they’re going through and just be that person, maybe the first person people talk to”.

Annie described how her school guidance counsellor told her, “Oh God, you can’t be a social worker – you’re mentally unwell”. Many of the students spoke about how they were discouraged from studying a mental health-related course on the grounds of having experienced distress themselves. Annie says she doesn’t “think it’s fair to say that because I have had things in my life” that she shouldn’t go on to fulfil her childhood ambition to become a social worker. She feels she has “more experience to deal with other people’s hardships when I’ve been through my own”. Annie believes that having “somebody who can actually relate to the client” would be a really useful addition to any mental health team.

One of the most defining features of the students who participated in this research more generally was their desire to help others. For some, such as Adrianna (above) and Leon, this was motivated by a desire give back. Leon described the “attention and care and encouragement and facilities and infrastructure and income” he has been afforded in his life as “wonderful”, particularly, he says, “for someone who hadn’t done much for anybody”. For Leon, the charity he and his partner set up to raise funds for a local children’s hospital is his opportunity to give back to a “society [that] has been very good to me”. Ashley spoke about how a traumatic experience in her teens left her with a sense that “Oh my God, I’m a horrible person, I deserve nothing”: “I decided at that point I was going to try and get medicine and be a doctor because that’s the only way I could make it up to the world”. She felt that by working hard to “try and help people” that “that might make up for the bad thing that I’m after doing”. Although she didn’t “get medicine”, Ashley spoke about how she hopes to use her current degree to find a way “to give back to the mental health community” that she feels has helped her so much.

Niamh described how studying psychology offered her an opportunity to combine her “own experience” with intellectual learning in order to “apply what I know, what I’ve experienced with research” so that she may help other young people who may struggle with their mental health.

Mary described how helping others, particularly through her postgraduate psychology research, creates a sense of “meaning” that is very important in her life.

The meaning offered by helping others was particularly important to Thomas. He says, “I just want to help people, it’s all I want to do”, and adds, “I would not see any purpose in life if I could not help people”. Over the course of his two conversational interviews, Thomas mentioned 13 groups, charities, voluntary organisations, and extra-curricular activities that he has been involved in over the last two years and says that giving back to his community and helping others makes him “feel like my life [has] meaning to it”.

For those students studying mental health nursing, having personal experience created a number of additional difficulties. The exception to this was Faye who appears not to have disclosed or discussed the mental health problems she experienced as a teenager with any of her course co-ordinators. She feel that this experience doesn’t impact on her mental health nurse training except to give her unique “insight” into issues such as self harm and personality disorders. Louise and Mai’s experiences, however, appear to have been less smooth.

Louise says she “always had it in my head to do nursing” and after she finished school she did a pre-nursing course and later worked as a care assistant before applying for a mature-entry place to study nursing at university: “I applied for general, intellectual disability and psych[iatric], the three types”. While she was unsuccessful the first time, after two years as a care assistant she was offered a place on a mental health nursing degree course at the university that was linked with the mental health services she was still regularly attending.

She immediately went to see her consultant who offered to “suss out” the most appropriate course of action with contacts at the university: “he was advised to tell me to make sure I’m honest in application forms, honesty really was what they were saying was the big thing. Register early with the disability service … that was basically it”. When filling in the paper work, Louise was careful to be honest but brief; “If they wanted to know more well they could ask but I wasn’t giving away anything really that could stop my chances”.

While her consultant was happy to provide written verification of Louise’s fitness to undertake a nursing degree course, she received what she experienced as opposition from other facets within the college. These included the disability officer she had been assigned (“He was already insinuating that because of the background I have I’m going to act crazy”); occupational health (“She said to me ‘As you are sitting here in front of me now are you thinking of killing yourself?’”); and her clinical placement co-ordinator (“the CPC said ‘Louise [Surname], you are not the girl who had all the trouble with occupational health are you?’”). In spite of this opposition Louise has successfully completed her placements and exams. While she enjoys her time on placement, she sometimes does “find it, kind of, pulls on me in ways. There is people there who just draw me straight back to everything”. Louise has successfully negotiated the first half of her first year but says she is “constantly” on edge – aware that “this can be taken away on me” should she slip up in the slightest.

Like Louise, Mai studied a pre-nursing course and, when completing her college admissions form the following year, “put down general nursing first and then psychiatric nursing”. She says that now she’s “delighted I got my psychiatric nursing instead of general”. Mai feels her own experience allows her to “empathise really well with the patients”: “I understand what it’s like, how scary it is to have a panic attack because you do think you are going to die”. She says that “when I am on placement I’m happy” and knows that mental health nursing is something “I will like working in”. However, she also says that “placement can be hard” – particularly when she sees patients with “similar” problems “getting help” and “getting better”: “you are like, Oh my God, why can’t mine get better”. Mai was discouraged from disclosing her mental health problem while on placement and gets “annoyed” with the sense of hypocrisy that lingers in the mental health field.

Mary also appears to be painfully aware of the stigma around being a mental health professional with a mental health difficulty. She spoke about how she wouldn’t seek help for her depression and anxiety in the college where she was doing her postgraduate research because she feels that “whether you realise it or not sometimes people can use it against you”.

What this section reveals is that studying a mental health-related subject with current or previous experience of a mental health difficulty is not straightforward. The empathy and desire to help described by the students position them to be excellent care-givers, but the toll of supporting those with experiences similar to theirs is considerable for some. This is further compounded by the fear that “this can be taken away from me” (Louise) should their diagnosis or distress be revealed, and concern that their professionalism may be undermined by the regrettable stigma associated with mental health difficulties.

Conclusion

This chapter explored just how students with mental health difficulties are supported in Irish universities. It described students’ experience of receiving a diagnosis and the supports they availed themselves of through their university disability support service. This chapter also touched on the challenges associated with receiving a psychiatric diagnosis and, in particular, the implications of being registered as disabled for students undertaking professional courses related to mental health. Overall, what this chapter highlights is that while the benefits of being able to avail of additional supports such as occupational therapy or extra time in exams is undeniably valuable, indeed essential, for the students in this study, they are not without consequence.