A Shameful, Hidden Diagnosis?

14.12.2021

Around 75%, of mental health problems in the Finnish population, develop before the age of 25, with the onset of mental health problems potentially beginning during the student years (The Finnish Central Association for Mental Health, 2020). Receiving a diagnosis has significant medical, psychological, and psychosocial implications for a student’s life, and time and sensitivity are needed to explain a diagnosis. In particular, serious mental disorders are associated with stigma, which can make it difficult for students to tell their peers about their diagnosis. This article was written based on the responses to email interviews with Tommi Väyrynen, Medical Director of Mental Health and Student Community Work at YTHS (Finnish Student Health Service) and the University of Helsinki team of study psychologists (Fanny Hedenborg, Johanna Mikkonen, Anu Lehtinen, and Kari Peltola). 

Defining the Diagnosis

The term ‘diagnosis’ refers to the process and outcome of making a diagnosis. Diagnosis is the process of diagnosing, classifying, and defining disorders, diseases, and injuries.  A diagnosis helps professionals to plan treatment and develop services, but a diagnosis alone is not enough, says Tommi Väyrynen, Medical Director of Mental Health and Student Community Work. Tommi Väyrynen adds that by monitoring and evaluating the distribution of diagnoses, one can get an idea of the need for and quality of mental health services, which information is then used to develop and add new treatments and services at YTHS.

The criteria and names of diagnoses have varied throughout history, from time period to time period, and from culture to culture, which means that they are not set in stone. They vary as medical knowledge evolves. They are classifications designed to help understand an individual’s challenges and help health care and educational institutions find appropriate support and treatment, says the University of Helsinki’s study psychologist team.

A diagnosis can also unnecessarily stigmatise and categorise a person, lead to incorrect or overly rigid lines of treatment, or be a burden if you are trapped by your diagnosis, says the team of psychologists.

Fear Of Stigmatisation

Being diagnosed with a disease is seen as undesirable, and a diagnosis can be accompanied by strong feelings of irritation, relief, and shame. Shame is particularly evoked by diseases that are seen by the community as contemptible and indicative of inferiority. Stigma can have the effect of stereotyping a person in social situations as a member of an inferior group, rather than according to their personal characteristics.  At different times and in different cultures, various diseases have taken on stigmatising connotations. The stigma of illness can manifest itself in an individual’s own experience, fear of stigma or discrimination, and shame. (Kaltiala-Heino, Poutanen & Välimäki, 2019.)

On the other hand, receiving a diagnosis can be accompanied by deep feelings of relief when the affected person is given a name and an explanation for their condition. When a worrying issue is given a name, it is easier to deal with and understand (Keinänen-Kiukaanniemi, 2020.)

Tommi Väyrynen says that fortunately, the stigma associated with mental health disorders has diminished thanks to public discussion. The stigma still exists and is especially great in severe mental illnesses such as schizophrenia. However, the threshold for reporting issues such as depression, anxiety disorders, or ADHD has been lowered.

To Tell Someone or to Keep A Secret?

It can be difficult for a student to tell those close to them about a diagnosis out of a fear of being stigmatised (Hofstra & Korevaar, 2020). Interactions with a stigmatised person are interpreted from the perspective of the illness, and the other party’s behaviour may change once a diagnosis is known. It can be difficult for a person stigmatised in this way to be seen as themselves, because their interactions with others are coloured by stereotypes of their illness. (Kaltiala-Heino, Poutanen & Välimäki, 2019.)

At the study psychologist’s office, the psychologists and the student will discuss whom it would be useful to tell and how this could be done in practice, say the University of Helsinki study psychologists. However, disclosure and secrecy are each individual’s personal choices and decisions. Students are often asked to reflect on and list the advantages and disadvantages of disclosure and secrecy, for example by considering the following questions: ”Should you tell everything or just a certain part?” ”Are you going to tell them about your diagnosis face to face or by text message?” ”What would be the appropriate situation for telling someone?” ”Are you going to tell everyone or just a few people, and why?” (Hofstra & Korevaar, 2020.)

It can be difficult to disclose a diagnosis out of fear of stigma. However, secrecy is fraught with consuming tensions, such as the possibility of embarrassment from an unexpected disclosure and the collapse of a carefully constructed identity.  The desire to avoid public stigmatisation can lead to concealment of symptoms, delays in seeking medical help, and failure in rehabilitation. (Kaltiala-Heino, Poutanen & Välimäki, 2019.)

Interpersonal problems caused by a stigmatised person’s illness can bring about a sense of shame. Shame is an emotion created by culture since culture has defined its shameful subjects. The danger for an affected person is to internalise negative images and stereotypes. Shame-related fears may relate to the very stereotypes that the community has associated with the stigmatising illness. The activation of feelings of shame does not require that others actually react to the disease as a stigma or even know about it. Shame can be related to the mental illness itself, but also to the attempts of others to help with the illness. (Kaltiala-Heino, Poutanen & Välimäki, 2019.)

How Should You Tell a Student About a Diagnosis?

When a student is told about a diagnosis, it is not enough just to hear the diagnosis; students also need understanding and support. Doctors should be able to be customer-specific, present, and prepared to answer questions and respond to the student’s feelings, such as anxiety caused by the news. (Artokoski & Hyvärinen, 2015.)

When delivering a diagnosis, it is important to explain what the diagnosis is based on and how it is going to affect treatment, says Tommi Väyrynen.  Sometimes, you need to allow enough time to explain the diagnosis if the illness is serious and will have a significant impact on the patient’s life. It is also important for the student to be able to ask questions on subsequent visits and be told where to find more information on the subject, says Tommi Väyrynen.