Fellowship | Health

Between illness and prejudice

By - 10.12.2019

The double battle of the mentally ill.

He was lying down in his room. It was afternoon, back in March, and it was still cold outside. Alban* didn’t feel well and was having dark thoughts. Looking back, he believes he had been suffering from anxiety and depression for months.

But something unusual was happening that day. He would later describe his condition as being immobilized in space, unable to free himself. He was suffocating, as if there was a ball stuck in his throat. He felt anguish, and his thoughts were unclear. 

For a moment he felt hopeless as to whether he would ever recover. At that moment, the idea of ending his life seemed like the only option. He went outside on the terrace of the third story of his house, grabbed the metallic bars, but ultimately he stopped.

The solution he had come up with suddenly seemed irrational to him, so he retreated. 

“It happened during a weekend. The problem is that if I don’t do something else to distract myself, I think about suicide,” he explains rather casually, as he drinks his coffee. “It pains the soul. At that moment, you feel as though there is no way out, and you think about ending your life. You think it is the only way to put an end to your suffering.”

Alban’s battle with his life occurred on the highest floor of his house in the Arbëria neighborhood in Prishtina. On the floors below were his parents and relatives, who had no idea about the emotional condition he was in. He has not opened up to them about the problems he faces.

“The idea of seeking psychological help made me feel weak.”

Alban, 23

He has been silenced by the fear of being misunderstood about his emotional fluctuations. The stigma that surrounds mental health issues and the lack of knowledge about them have prevented him from seeking professional help. Moreover, he considers psychological treatment to be a weakness. 

“The reason I haven’t sought help is because I thought that this was normal and if you get through it without anyone’s help, you are even stronger,” the 23-year-old says. “The idea of seeking psychological help made me feel weak.”

Alban has no convincing explanation for his emotional condition. He says his life is going well, and that there are no external factors that make him feel bad. He is a programming engineer and works at a U.S. IT and programming company. He has a good salary, triple the average wage in Kosovo. But he says that this does not make him happy. 

He believes he has been suffering from what is known in medical literature as clinical depression, although like many people who struggle with mental health issues, he has not had a professional diagnosis. 

The Diagnostic and Statistical Manual of Mental Disorders — the most important document in the field of mental health that serves as an authoritative guide to mental disorder diagnosis for most psychologists and psychiatrists around the world — lists a series of criteria for diagnosing depression. Some of the most important ones include depressive mood that lasts for most of the day and for weeks on end, sleep disorders, lack of interest and pleasure gained from most activities, fatigue or loss of energy, feelings of worthlessness or inappropriate guilt, as well as suicidal thoughts, ideation or actual attempts.

Bind Skeja has experienced such concerns for years. However, his approach was completely different. A 2016 psychology graduate from the University of York in the UK, Skeja was aware of mental health issues before being faced with them.

Bind Skeja recently opened the “Lifeline” suicide prevention helpline. He started working in mental health support after studying psychology and experiencing his own mental health issues. Photo: K2.0.

The emotional fluctuations began a few years ago, shortly after returning from the UK. He experienced phases of depression which he says made it difficult to get out of bed in the morning. But the turning point was the moment he experienced his first panic attack.

“I woke up in the morning and went down to the kitchen,” he says. “My dad was preparing breakfast and I wanted to help him with something. I walked toward him and as soon as I approached, I felt my heart beating very fast.”

Skeja continues: “I couldn’t stand, I had to lean on something. I lay down on the couch, and felt pressure on my throat. It felt like someone was suffocating me. I was sweating a lot. I thought I was having a heart attack. My dad picked me up, took me to the car and drove me to the hospital.”

“I would go out with my friends, but when I’d go home, I'd be the same. I've never felt more alone, more depressed. I felt empty inside.”

Bind Skeja

He knew this was a panic attack. The experience pushed him to take his emotional problems more seriously.

“After the first panic attack, I was like a wrecked building,” he says. “I would go out with my friends, but when I’d go home, I’d be the same. I’ve never felt more alone, more depressed. I felt empty inside. It was like a pain inside my chest, but not a physical pain. From then on, I began looking for a psychologist.”

Today, one year on, Skeja says that he feels much better. He started psychological therapy seven months ago and goes to one 45-minute session each week, which helps him manage his problems with anxiety and depression.

When he talks about society’s approach to mental health, he highlights stigma as one of the main issues. He says he is lucky to have relatives and friends who understand his problems and the path he chose to deal with those problems. But due to stigma and prejudice, not all people choose such a path.

Challenged by these problems but also well-informed about mental health as a result of his studies in the UK, Skeja dedicated his time and career to promoting this field in Kosovo.

He is the executive director of the NGO Center for Information and Social Improvement (Qendra për Informim dhe Përmirësim Social, QIPS), which he established in October 2016. With no institutional support, in November this year he opened the “Lifeline” (Linja e jetës), a telephone helpline for suicide prevention.

Suicide prevention helpline “Lifeline” opened in November 2019 and is currently the only such support of its kind available in Kosovo. Photo: K2.0.

The organization has helped to train 11 volunteers from Prishtina throughout the year, after engaging trainers from the Dutch suicide prevention line 113. Through volunteers, mainly students from different fields, Lifeline aims to provide every person who is experiencing a difficult emotional situation a chance to have their voice heard while also preserving their anonymity. At the moment, it is the only one of its kind in Kosovo.

Skeja says that society’s approach toward mental health issues was the main reason for the initiative. 

“We are not a society where you can talk openly about mental health issues, so this is necessary,” he says. “Even in Western countries, lines such as this one are necessary, let alone in countries like ours, where the stigma is more prominent.”

High number of suicides

Based on data provided by Kosovo Police, 1,032 people have committed suicide since the war. In 2018, 37 suicides and 164 suicide attempts were recorded. This figure was highest in 2014, with 77 suicides.

On average, it means that three people attempt to commit suicide every week. At least one person a week does commit suicide. 

The numbers show that young men are most at risk of taking their own lives. Around 70 percent of suicides in Kosovo are committed by men, with people aged 26-30 most likely to commit suicide, followed by people aged 19-25.

 

Bind Skeja suspects that the genuine suicide figures are even higher, because this category does not include other deaths, such as deliberate overdoses. He says that due to social stigma, many suicide attempts are not reported at all.

According to Skeja, the causes that push people to commit suicide are mainly biological.

“The basis is biological. Someone is born with a predisposition for such a [mental health] disorder,” he says. “If someone is biologically inclined to have mental health issues, such as depression or anxiety, socio-economic circumstances can influence symptoms to surface, but they are not the cause of these issues.”

The head of the KLA veterans’ organization says that since the end of the war, 52 veterans have committed suicide.

However, sociologist Albert Mecini says that social factors also play an important role in the suicide rate. He says that the number of men who have committed suicide in Kosovo is higher because severe socio-economic conditions weigh on their psycho-emotional condition, making them lose self-confidence.

“In our societal tradition, men are considered to be the head of the household, responsible for funding and housing,” Mecini says. “When they fail to fulfill this function and social expectation, the psycho-emotional pressure grows. It becomes unmanageable and unbearable for certain individuals.”

Another category where suicide rates have increased is war veterans. The head of the KLA veterans’ organization, Hysni Gucati, says that since the end of the war, 52 veterans have committed suicide. The main cause is the severe emotional condition that is a result of their war trauma, he says.

“Over 90% of veteran suicides have been committed as a result of war trauma,” Gucati says. “Around the world, after wars, mental illnesses happen. The same thing happened here. We have veterans in hospitals, but also at home, who face psychiatric issues and are medicated for it.”

The head of the Psychiatric Clinic at the University Clinical Center of Kosovo (UCCK), Shaban Mecinaj, says many veterans suffer from post-traumatic stress disorder (PTSD). The United States Veterans Affairs Department shows that up to 20 percent of former soldiers are diagnosed with PTSD.

“Traumatic events such as war and other situations where a person’s life is directly endangered can produce post-traumatic stress disorder, that is later repeated and combined with depressive disorders,” Mecinaj says. “So they become depressed, they become susceptible to other psychiatric disorders, which culminate in suicidal thoughts and tendencies. And sometimes suicide itself.”

Shaban Mecinaj, head of the Psychiatric Clinic at UCCK, says that many war veterans in Kosovo suffer from post-traumatic stress disorder. Photo: Adi Beqiri / K2.0.

Neuropsychiatrist Jusuf Ulaj has a similar opinion. He says that although 20 years have passed since the war, they constantly have new people seeking professional help for the first time. These cases are related to different traumatic situations that they experienced during the war in Kosovo. He explains that the main symptoms are anxiety, depression, insomnia and nightmares related to psychological trauma.

However, he says that the number of suicides in Kosovo are also influenced by other social and economic factors.

“The increase in the number of suicides after the war in Kosovo, including suicides of former KLA fighters, could be related to the traumatic situations they experienced,” Ulaj says. “But we cannot look past social and economic destitution, the disappointment and lack of hope.”

Meanwhile, sociologist Mecini says that the concerningly high number of suicides among war veterans is evidence that this social category was not properly looked after in the immediate aftermath of the war. 

“Some of them remain forgotten by institutions and continue to face severe living conditions and poverty,” he says. “There is also the lack of health care programs and projects for veterans, the kind that other countries have. It is not enough to give them discounts and provide pensions for them. This social category needs continuous special care and treatment.”

“We are Albanians and we don’t like being told that we are mentally ill.”

Hysni Gucati, Organization of KLA War Veterans

The institutional lack of engagement is similarly noted by Gucati. He says that he made a suggestion to the government institutions to build a rehabilitation center for veterans, after seeing a similar center in Croatia. However, his proposal was not supported. 

Gucati says that there is much need for such a center because the number of veterans suffering from PTSD is greater than we think.

“We are Albanians and we don’t like being told that we are mentally ill,” he says. “For this reason, veterans rarely come forward to seek help. I think the number is higher, but their relatives don’t want others to find out about these problems.”

In fact, the creation of such a center is legally required. Article 23.3 of the Law on KLA Veterans foresees the establishment of a Post-Traumatic Stress Center for veterans that would strive for “spiritual and emotional rehabilitation from war-induced trauma.” 

The Ministry of Labor and Social Welfare is responsible for the establishment of this center. It confirmed that the center has not been built, but did not say why not. 

Support for veterans has been limited to pensions, the main demand of organizations that advocate for them. Each year, millions of euros are spent on pensions. 

The number of people who receive these pensions, as well as the sum of money that the state spends on them, is increasing yearly. According to research conducted by K2.0, in 2016, 47.9 million euros were paid to 28,000 veterans. In 2017, this sum increased to 65.9 million euros, and in 2018, the total sum of these pensions was close to 80 million euros.

‘Only crazy people need a psychiatrist’

Problems with stigma and prejudice don’t just affect war veterans but are also highlighted by professionals who provide services to a wide range of people who face mental health issues. 

Neuropsychiatrist Ulaj has been working with mental health patients for 34 years. He knows the challenges in the field all too well. Although he says that stigma and prejudice toward emotional disorders exist everywhere, he believes that in Kosovar society they are more severe because of the culture and approach of Kosovar society toward mental health. 

“Many people in our society are still convinced ‘only crazy people need a psychiatrist’ and consequently ‘it is better to have cancer than to need a psychiatrist,’” says Ulaj, who provides his services at the Aura Clinic in Prishtina. 

“Just as we can be affected by different diseases that affect the body, like diabetes, hypertension, rheumatism or cancer, we can also suffer from psychological problems. So it is not embarrassing to be faced with psychological concerns. People shouldn’t hesitate to seek help.”

Neuropsychiatrist Jusuf Ulaj says that many people in Kosovo believe it is better to have cancer than to need a psychiatrist, due to the stigma that still exists around mental health. Photo: Adi Beqiri / K2.0.

Ulaj says that the most common cases of emotional problems among his patients are anxiety, phobias, panic disorder and depression. 

Kosovar institutions have no data to show how many people suffer from these problems. But studies conducted globally by international organizations show that they are quite common in everyday society. 

Official data from the World Health Organization (WHO) shows that over 300 million people around the world suffer from depression, while there are 800,000 suicides each year. According to WHO, stigma, discrimination and lack of access to proper health care are the three main issues that surround the effective treatment of mental health. This seems to be especially relevant in Kosovo.

In 2018, psychologist Eurisa Rukovci established the NGO Social Lab, through which she aims to prioritize mental health in state policies. Rukovci also highlights stigma and prejudice as the main problems.

Psychologist Eurisa Rukovci says there is still a mistaken societal perception in Kosovo that people who suffer from depression have weak personalities. Photo: K2.0.

She identified two types of stigma in Kosovar society: Social stigma and internalized stigma, which surface as stereotypes, prejudice and discrimination.

“The former is related to stigmatized beliefs toward individuals who might suffer from mental disorders, and that is structural among the public at large,” Rukovci says. “The second is social stigma, or the perception that there is social stigma, which is internalized by people who suffer from mental disorders.” 

She takes the example of depression: “There is a belief that individuals with depression have weak personalities. This is based on prejudice and feeds social as well as internalized stigma.”

Similarly, sociologist Mecini explains stigma in the cultural and social context. According to him, stigma is a result of a wrong, outdated mentality that people have toward these problems.

“Often, there has been a mistaken belief that it is more important to preserve an individual’s social image as a perfect being that has no problems, rather than to address their actual condition, especially psychologically,” Mecini says. “This has been an incorrect mentality of the past that unfortunately continues to be present to this day, although not as much as before.”

In the 2019 budget, only 3 million euros were allocated for mental health. That translates to 1.2% of the total healthcare budget.

In addition to society’s stigmas, the issue of mental health does not receive enough attention from institutions. Professionals have noted a lack of engagement and investment in this field. 

UCCK’s Shaban Mecinaj, says that mental health is not a priority, and that this is best illustrated by the lack of investment.

“Unfortunately in Kosovo, except for a few investments that were made after the war in mental health centers with the aim of integrating psychiatric services, there was no prioritization of regional hospitals, departments and clinics,” he says.

In the 2019 budget, only 3 million euros were allocated for mental health institutions, out of 234 million euros that were allocated in total for health care. That translates to 1.2% of the total healthcare budget. In comparison, European Union countries allocate, on average, 13% of their health care budgets for mental health.

However, even that 3 million was allocated to simply cover the wages and official expenses for the 258 employees in the sector, as well as for equipment and services. There was no budget expenditure for capital investments.

The Psychiatric Clinic that Mecinaj heads is located in the capital, while in Kosovo’s main cities there are nine centers that operate and provide general mental health services. Two are in the Prishtina region, two in the Mitrovica region, and one each in Gjilan, Ferizaj, Prizren, Peja and Gjakova. 

According to the Ministry of Health, these centers provide activities for psychological education, individual and group psychotherapy, home visits, consultations for family medicine services and other services. Moreover, in Kosovo there are nine Houses for Community Integration, each of which has 10 beds and provides rehabilitation services, as well as 24-hour care for acute psychiatric patients.

Rukovci from Social Lab says that there are big problems with the mental health treatment approach in the health care institutions, including a weak referral system, a lack of qualified staff and insufficient investment. She believes there is a need to strengthen, monitor and evaluate programs offered by public institutions, to receive and share information about their efficiency. 

The only organization that has monitored and evaluated the work of mental health institutions in Kosovo is the Kosova Rehabilitation Center for Torture Victims (KRCT). Fatmire Haliti is a monitor within the organization.

“The number of staff is very low in proportion to the number of clients and their needs,” Haliti says. “In many institutions, in the Houses for Community Integration, for example, there is only one nurse during the night shift, and they have to care for 10 residents with psychiatric diagnoses. The nurse must feed them, take care of their hygiene and treatment. There are no support staff in these institutions.” 

In addition, she says that there is no individual plan for treating and re-evaluating patients in these centers.

“There are cases where the psychologists give religious books to people who are unstable.”

Bind Skeja, Center for Information and Social Improvement

Meanwhile, Bind Skeja says that even in health care institutions there is stigma and prejudice toward mental health issues. Recalling his experience after his panic attack, he says that the approach from medical staff at the Emergency Center at UCCK did not make it easier for him.

“The medical staff were terrible in the psychological aspect,” he says. “They said things like, ‘Such a young boy… you don’t need to stress.’”

He says that the conditions at the mental health centers are not good, and the staff do not understand concerns related to mental health.

“It depends who you get, but there are psychologists who, instead of providing psychological services, provide religious advice,” Skeja says. “There are cases where the psychologists give religious books to people who are unstable.” 

He says this feeds the stigma further, and adds that there is “insufficient control of staff in these centers and the management isn’t good.”

Meanwhile, the KRCT monitor says that the stigmatization of mental health is even more pronounced in other medical departments, where people who suffer from severe mental disorders are sometimes rejected and do not receive the treatment they require.

“If a mental health center client needs to be treated in a department or clinic for some other illness, they are rejected with the justification that they cannot treat them due to their mental disorder,” Haliti says. “Often, they ask to have them taken to a psychiatric department for treatment, even though the issue is some other illness.” 

The consequences of ignoring the problem: Drug abuse

Inadequate monitoring of medicines from institutions and the reluctance to seek medical aid because of stigmatization are causing additional challenges to people who suffer from mental health issues. One of the consequences of this is the use of psychotropic medication without medical prescription. 

Psychotropic or psychoactive drugs intervene in the chemistry of the brain to manage mental health issues. There are two types that are most common for treating emotional disorders: Antidepressants, which are used to treat depression and anxiety, and anxiolytics, which are used as an immediate remedy for anxiety and fear. 

Doctors warn that in Kosovo these types of drugs are being taken without medical prescription, and that this is causing problems for users.

In 2016, Diana* used the antidepressant Escitalopram, without a doctor’s prescription, for about two months. Escitalopram increases the level of neurotransmitter serotonin in the brain. Serotonin deficiency is linked to depression and anxiety.

“I was quite skeptical about the effect of antidepressants. I started to think that this wasn’t the right way to deal with the problem.”

Diana, 24

During her studies (2014-17) she experienced phases of depression that she says stemmed from the pressure and expectations of society. After doing research on Google for a few days, she began using antidepressants.

“I hesitated to get psychotherapy because I knew many psychologists, and I didn’t trust the ones that I didn’t know,” the 24-year-old says. “It was easiest to try antidepressants.”

During the couple of months she used antidepressants, Diana faced a dilemma. 

“While I was using them, I had an anti-medical approach toward psychological issues, because I was quite skeptical about their effect,” she says. “I started to think that this wasn’t the right way to deal with the problem. I felt lost at that time. I wasn’t good or bad — just lost. So I stopped taking them.”

She strongly recommends that nobody self-diagnoses or self-prescribes drugs. 

The sale of drugs without a prescription is sanctioned by the Law on Medicinal Products and Medicinal Devices and the Administrative Order for Prescriptions in the Health System. The Pharmaceutical Inspectorate, part of the Ministry of Health, is responsible for monitoring drugs.

Officials admit that there is a phenomenon of selling psychotropic drugs without prescription. They say that, in an attempt to prevent this, the Pharmaceutical Inspectorate conducts ad hoc and on demand inspections. However, pharmacies are rarely fined. 

In 2018, according to the Pharmaceutical Inspectorate, over 600 inspections were conducted, but only four pharmacies were fined 1,000 euros each for selling medications without a prescription. During the first half of 2019, only two fines were given for this kind of violation.

This symbolic number of fines allows this phenomenon to continue widely. Diana says that purchasing medications without a prescription is quite easy.

“Surprisingly, I managed to get them more easily in a pharmacy in the city center than in the Bregu i Diellit neighborhood, where I lived,” she says.

In 2014, a research study on the sale of drugs without a prescription was conducted by the Institute of Criminology and Criminal Justice NGO. Researchers visited 23 pharmacies in six cities around Kosovo attempting to purchase Alprazolam (Xanax), Diazepam and Methadone, the sale of which are all prohibited without a prescription. The first two are benzodiazepines, while Methadone is used to treat dependence on narcotics. 

The issue was most problematic in Prishtina, where all of the 11 pharmacies that were visited agreed to sell these drugs without prescription. 

“From the field research we concluded that any citizen can purchase these medications without prescription, although this is illegal,” the report found. “Narcotic medications and psychotropic substances can be purchased without any identification procedure. These medicines can easily be bought and used without any criteria.”

According to doctors, it is very problematic that these medicines can be bought so easily.

“I'm concerned when I get cases like this because it's very difficult to get someone to quit taking Xanax after they’ve taken it for years.”

Jusuf Ulaj, Neuropsychiatrist

Neuropsychiatrist Ulaj says that there are many patients who come forward after a long period of using drugs that they call “relaxants.” Most patients take them without medical prescription. In some cases they take them after consulting doctors in a variety of medical disciplines, or family doctors.

According to Ulaj, some of the drugs that are most often used without prescription are Xanax, Diazepam and Lexilium. They are all classified as benzodiazepines and are known as sedatives because of their immediate calming effect.

“There are cases when the drugs are recommended by friends or acquaintances, by self-appointed imams or traditional healers, who claim that it will do them good,” he says. 

Ulaj explains that often in these cases, people end up becoming dependent on the drug, in addition to their psychological issues.

“As a psychiatrist, I’m concerned when I get cases like this because it is very difficult to get someone to quit taking Xanax after they’ve taken high doses every day for many years,” Ulaj says.

Shaban Mecinaj, head of the Psychiatric Clinic, shares the same concern. He says that psychiatric medication should be prescribed with care, and the patient should be followed closely while they are undergoing therapy. This is because, according to Mecinaj, most of these medications can cause unwanted side effects, such as tolerance — when the body constantly needs higher doses to reach the same effect — and dependence, which can harm the patient. Benzodiazepines in particular can cause these effects, he says.

Doctors lay the blame on institutions.

“The main shortcoming that enables this misfortune is the dysfunctional healthcare and pharmaceutical system in Kosovo,” Ulaj says. “Unfortunately, you can go to our pharmacies and take whatever medication you want with no prescription — unforgivable and very damaging. [Laws] that prohibits the sale of these medications without prescription have been approved in Parliament, but are not implemented on the ground.” 

There is very little data about the use of these drugs in Kosovar society. The only research study on this issue was conducted in 2014 by the European Monitoring Center for Drugs and Drug Addiction (EMCDDA). In the study, 2% of the respondents said they had used antidepressants in the past, while 3% said they had taken anxiolytics in the past year.

Despite the institutional disregard and society’s prejudicial approach, professionals in the field highlight the importance that mental health has in a person’s life.

Visar Sadiku, a clinical psychologist, works every day with clients who need help stabilizing their emotional condition. He says that a person cannot function properly when their mental health is damaged.

Clinical psychologist Visar Sadiku says the level of awareness about mental health in society is still unsatisfactory and that many people are reluctant to receive help as a result. Photo: Adi Beqiri / K2.0.

He provides two explanations as to why people who face these problems do not always turn to psychologists for help, but opt for other methods. 

“Psychology is relatively new as a science in our country, and as such, there is still much stigma around it. Usually people who are referred to psychologists can be seen by others as people who have problems that directly influence their mental functioning, but that is not always the case,” Sadiku says. 

“Another reason that we’ve found to be true: Many of them tell us that they didn’t know exactly what kind of services a psychologist provides. They were then reluctant to seek help from one. This shows that the level of awareness about mental health within the community, especially in rural areas, is unsatisfactory.”

Bind Skeja does not regret knocking on a psychologist’s door to ask for help. His life completely changed after his first psychotherapy session.

“Now I am a completely different person. I rebuilt myself from scratch,” he says. “Now I am the best version of myself. All this because I went and worked on myself.”

However, without the proper institutional support and reluctance because of social prejudice, many people will have to face their mental health issues alone. K

If you have been affected by the issues discussed in this article, you can contact the “Lifeline” suicide prevention helpline on 0800 12345 (each day between 21:00 and 01:00).

* Editor’s note: The names Alban and Diana are pseudonyms that have been used to protect the identities of individuals at their request. 

Edited by Bekim Kupina.
Additional editing: Besa Luci, Jack Butcher and Bronwyn Jones.

Feature image: Adi Beqiri.

This article has been written as part of the second cycle of the Human Rights Journalism Fellowship Program supported by the European Union Office in Kosovo, co-financed by the project ‘Luxembourg support to civil society in Kosovo,’ financed by the Government of the Grand Duchy of Luxembourg and managed by Kosovar Civil Society Foundation (KCSF), as well as from the National Endowment for Democracy (NED). This program is being implemented by Kosovo 2.0, in partnership with Kosovar Center for Gender Studies (KCGS), and Center for Equality and Liberty (CEL).
Its contents are the sole responsibility of Kosovo 2.0, KCGS, and CEL and do not necessarily reflect the views of the donors.