Healed but not spared—unseen persistent stigma of mental illness in Rwanda and beyond

By Louise Mukantagengwa under Life In Humanity and Radio Ishingiro Collaboration and Jean Baptiste Ndabananiye

Discrimination against individuals who have recovered from mental illness constitutes a pervasive injustice, cutting across borders and societies, including Rwanda. Despite being certified as fully healed, these individuals face rejection and stigma, their potential being wasted in workplaces and communities that unfairly label them as “insane.” The article consists of these sections:

1. Insights on mental diseases
2. How the situation stands in Rwanda
3. The issue is universal

Insights on mental diseases

Main causes of mental illness include disruptions in brain function known as brain chemistry, traumatic experiences such as abuse and violence, chronic stress caused daily life challenges, below-normal hormonal levels, genetic factors and other physical health conditions such as a heart disease.

People who once suffered from mental illness but have been successfully treated are generally labeled ‘mad or demon-possessed‘ in various societies. These terms are demeaning and strip individuals of their human dignity. This leads to their social exclusion, stigma in public places, and subjects them to further violence.

This becomes an even bigger issue when someone who has recovered from a mental illness returns to work. Their employer does not trust that they can perform like others and fires them, calling them “mentally deranged people.”

On 26 June 2024 the World Health Organization (WHO) released a story entitled “The overwhelming case for ending stigma and discrimination in mental health.” The story reads “Living with a mental health condition like schizophrenia or depression is difficult, but for many people living with mental health conditions, the negative perceptions and behaviours that arise in others and yourself are even worse.”

More details on schizophrenia and its components

Schizophrenia forms a complex mental health disorder that affects a person’s ability to think clearly, manage emotions, make decisions, and relate to others. It is often characterized by a range of symptoms such as hallucinations, delusions and disorganized thinking.

Hallucination means seeing or hearing things that are not present, such as hearing voices. Hallucinations are sensory experiences that occur without any external stimuli. For example, hearing voices that others don’t hear (auditory hallucinations) or seeing things that aren’t there (visual hallucinations).

Delusion signifies holding false beliefs, often with paranoia or suspicion, that are resistant to reason or evidence.

Disorganized thinking is trouble organizing thoughts, resulting in jumbled or incoherent speech. It refers to a disruption in the person’s thought processes, making it difficult for them to organize their thoughts coherently. This can result in speech hard to follow or rationally understand. The person may jump from one topic to another with little or no connection between them, rendering it difficult for others to follow the conversation. This symptom prevents a person from answering questions or engaging in a logical discussion.

The exact cause of schizophrenia isn’t fully understood, but it is believed to involve a combination of genetic, biochemical, and environmental factors. Schizophrenia usually requires long-term treatment, often combining medication and therapy, to help individuals manage symptoms and improve quality of life.

Historically, schizophrenia and other severe mental health disorders were often misunderstood and branded as “madness” or “insanity.” Before modern psychiatry, mental health conditions like schizophrenia were frequently misinterpreted, leading to significant stigma and mistreatment. People experiencing symptoms such as hallucinations, delusions, or disorganized thinking were often feared, marginalized or discriminated against.

With advances in neuroscience and psychiatry, schizophrenia is now understood as a brain disorder with biological, psychological, and environmental factors at play. This understanding has shifted perspectives from viewing those with schizophrenia as “mad” to recognizing them as individuals with a treatable medical condition.

However, the historical stigma associated with schizophrenia still lingers, keeping it essential to continue educating and advocating for mental health awareness to reduce discrimination and promote understanding. This is even confirmed in the WHO’s story.

This story features Charlene Sunkel, founder of the Global Mental Health Peer Network and co-chair of the Lancet Commission on Ending Stigma and Discrimination in Mental Health, who provides a poignant testimony. “I live with schizophrenia. It is amazing how people react the moment they just hear the word – they immediately take a step backwards. They are afraid of you because of this whole false perception that we are dangerous, we are unable to think, unable to work – that we are basically useless.”

The WHO states “Prejudice and misinformation can in turn lead to discrimination, both at the interpersonal level (public stigma) and in laws and policies (structural stigma). Stigma has also been cited as a reason that mental health services receive less funding and are considered less prestigious than other health services in many countries.”

Examples of the form of negative attitudes or prejudice, according to the WHO, include phrases like “I don’t want to be around this person, they are dangerous.” An example of misinformation, as stated by the same source, is like “You can’t recover from depression”.

Sunkel says “I was told that I’d never be able to work. I was also constantly in hospitals experiencing the abuse within the system in South Africa. It was when I started speaking to fellow peers that I began to realize that stigma is probably the biggest barrier for us to really gain our life back and thrive.”

“If there’s one solution to resolving stigma, it’s inclusion of people with mental health conditions in everything – in employment, education, communities. By including people, others can see it’s another human being, deserving of dignity and human rights.”

How the issue stands in Rwanda

There are people in the country who are unfairly dismissed from their jobs, just because they once experienced mental illness whereas they have been healed. These are individuals who were once mentally ill but have recovered and no longer take medication. They report facing harassment from their employers firing them upon learning of their past mental health struggles, saying that they cannot work with “the insane.”

This harassment reportedly occurs in both government and private institutions. Health institutions, anti-injustice organizations and those which represent workers’ interests condemn such actions and call for an immediate end to these practices.

Peter Hitimana says that he has been sacked from various workplaces, explaining that he has been excluded just because his former employers finally discovered that he once developed a mental disease.

Hitimana “Many people call us mad. But we possess a way of disregarding them, without hurting them. I am not little educated though not maximally educated too; I possess knowledge and skills that are far from trivial. Yet, instead of society utilizing my skills, it rejects me. I have gone to school and reached university level; now I hold a master’s degree. I have worked in seven different organizations all of which dismissed me without any wrongdoing on my part. It was instead due to the wrong information they received from people saying ‘Behold a mad person whom you employ.’

Those seven organizations included banks and schools. In truth, I did not experience poor performance, and I believe that they lost an employee who could have contributed immensely. I suspect that they adopted a foolish decision. In any case, with such a decision, you end up depriving yourself of great opportunities that you would reap from the person whom you dismiss. The issue of stigma especially begins in local government leadership.”

Straton Kabano is another person who says that he has faced the same fate. “I contracted a mental illness, and I went for treatment in Ndera [Neuropsychiatric Teaching Hospital]. I got better and was given a certificate showing that I had recovered. I had been ill for about three months.

When I returned to work, I showed them the certificate, but what surprised me was that they told me they wouldn’t employ someone who had been mentally ill. They used derogatory language, saying they wouldn’t engage a mad person, even though I had been healed. In the end, they dismissed me. This caused me to go back to Ndera to ask whether the certificate showed that I was cured or if I still sustained a mental illness and they answered me that I have been perfectly healed.”

Claver Havugimana leads a Rwandan organization representing people with mental illness. He also confirms that individuals with this condition are  dismissed from their jobs. He says “Stigma remains an issue which we continuously see. Stigma constitutes a big thing, people know that having a mental illness means a permanent loss of one’s abilities.

However, what we are dealing with now is that even someone who has been treated and healed fears to share their stories, in order not to lose opportunities. Because revealing your sensitive personal secret while the society has not changed yet ruins opportunities that you once enjoyed—your employer terminates you. Since a job is vital, it justifies why people prefer to remain silent rather than lose their job. So, most people avoid disclosing their experiences.”

What action to definitively address this problem in Rwanda?

Havugimana calls upon the government and human rights organizations to urgently address the problem, stressing that those who have recovered must also resist the challenge which they face, though not easy. “But they (former patients) should stand firm. However, a person stays firm, when they have those who support them.

Rights belong to every citizen in the country, all Rwandans are equal, and being ill is not a crime. If it were a crime, they would be arrested. But, if the government does not jail them, it is because they have committed no crime. The local government should inspect households with patients of mental illness, not just talk about it, but engage in thorough monitoring. They should live as others do. There exists no mental illness that is incurable or that cannot be treated to a level where one can serve the nation.”

Dr Arthur Muremangingo RUKUNDO is a Specialist in Psychiatry/Senior Consultant.  This researcher focused on the factors contributing to mental illness is also among physicians responsible for discharging mental health patients from Ndera Neuropsychiatric Teaching Hospital. He began his journey in psychiatry in 2006.

He explains that once a person previously diagnosed with a mental illness has been confirmed as healed, they should be regarded as someone who has never experienced this illness. He says “A lot of people do not understand that someone who has experienced a mental health issue can receive treatment just like a person with diabetes, HIV, or hypertension, and be treated by knowledgeable doctors, and then return to a meaningful life, contributing to their family and society at large.”

“Stigma against people with mental health conditions represents a visible issue which prevails. In all these years in the career, I have seen several people who do not return to their jobs, while they had been performing well, simply because they produce a medical record indicating they have developed a mental illness, received treatment, and are on medication. This situation deprives them of the opportunity to continue working.

I would advise employers that if they receive a medical certificate stating that the person was previously ill but is fit to return to work, and if they harbor doubts, they should reach out to the doctor, request for an appointment, and discuss the employee’s capability with them. Once we have treated the patient, we give them a certificate stating that they are fit to return to work and resume their job.”

Marie Immaculée Ingabire serves as the Chairperson of Transparency International Rwanda. She explains that she didn’t use to know this case. She says “I am flabbergasted and I think the government does not know this, because it is something shameful that cannot be tolerated in a country like ours. As we know it, our country would not accept such things. These people have faced injustice very severely. A person has indeed been ill; falling ill is unfortunate, and we can all get ill, but they have been successfully treated, and the doctor confirms that they have recovered. They then return to work.

So, what does their employer base their decision on to fire them? Because they have become ill, while they have been healed. Honestly, it astounds me. Could you help us to meet them (victims of the injustice), have you seen them? Because I think we have not received such a case. We should meet them like at the office, so that we can converse with them and hear their background, institutions for which they worked and that fired them. Afterwards, we can talk to the employers and see what can be done because this constitutes an injustice that people cannot accept.”

Evariste Murwanashyaka is CLADHO’s employee in charge of work coordination. CLADHO is the French acronym translated as Umbrella of Leagues and Associations for the Defense of Human Rights. He also emphasizes that it is already time for such a practice to end.

“In international human rights principles and even the Constitution of the Republic of Rwanda that we observe, discrimination is prohibited. In addition to having recovered, even if they were still suffering, this person would be allowed to work, if the doctor has indicated that they have some capacity to do something. Who prevents them from doing it commits discrimination against them.

However, our government doesn’t permit that practice while the international agreements don’t allow it too. This stands as the violation of human rights, as those who live with disabilities are entitled to perform work that they can handle, the same principle applies to this group.”

CESTRAR, in the French acronym, constitutes Rwanda Workers’ Trade Union Confederation. It says that it is going to work with organizations defending the rights of people with mental problems, in a bit to seek the solution to this issue. It specifies “We are going to speak to those organizations that defend people facing mental issues, since it is a concerning problem, nobody has to be victimized by having suffered from a disease. So, we are going to work with them and conduct research on this problem.”

The spokesperson of the Ministry of Public Service and Labor, Richard Dan Iraguha, says “When a person is dismissed from work, whether it is due to abuse or failure to adhere to the laws; they approach a labor inspector. The labor inspector follows up the matter and gives a recommendation on how to resolve it, by calling both the employer and the fired employee to discuss. In every district, there is a labor inspector, and that labor inspector bears no other responsibility than settling issues that arise between an employer and an employee in that district.

They are always available to assist people, and when a complaint is filed, the labor inspector contacts the employer, summons them in writing, with the district’s stamp on it, saying, ‘You are required to appear before us on this date and explain the issue you sustain with your employee.’ The employer comes, and the inspector asks, ‘Why have you dismissed them? Why have you committed an injustice against them? I notice that you have not complied with the labor law.’ You are then required to reinstate the employee or to pay the fines as stipulated by the labor law. Therefore, these people are advised to go to the labor inspector’.”

The issue is universal

As already indicated particularly with Sunkel’s story, this problem is ubiquitous. Best Health Magazine Canada— a Canadian health and wellness magazine that covers a broad range of topics including physical health, mental well-being, nutrition, fitness, beauty, and lifestyle—also confirms it. On September 01, 2024 it updated an article originally published on January 15, 2024. The story is headlined “I Was Fired Because of My Mental Illness”. Below the headline is written the name, K.J. Aiello. Perhaps, it is Aiello who says “I Was Fired Because of My Mental Illness.” The following is an original excerpt of the narrator’s story—from the Canadian magazine— to which we will come back in our next article in this category.

In September of 2018, I was fired from my job. It was an exciting, new position at a large employer, and when I accepted the role, I’d felt ready for the challenge. I’d worked in the legal industry for nearly a decade, and I was good at it. I’d built a career managing busy practices for my supervisors, balancing their demanding schedules and dealing with the court systems. I was the first point of contact for many clients. I was used to fast-paced work environments with lots of moving parts, I knew what I was doing and I felt confident. I’d certainly never been fired before.

But I also live with bipolar disorder, generalized anxiety disorder and agoraphobia. I regulate my day-to-day by keeping a close watch on my moods and somatic symptoms. I take my medications, visit my doctor when needed and attend my therapy appointments. After 20 years of dealing with this, I’ve become a bit of a self-management expert.

As the days went by in my new job, anxiety started creeping in. Despite the positive feedback I was receiving from my supervisors and colleagues, I began to feel incompetent, and it was affecting my ability to work quickly and under pressure, which is the norm in the legal field. I also heard harmful slanders against folks with mental illness, and working in a large open-concept space was triggering my agoraphobia. For me, this manifests as panic attacks whenever I feel like people can see me, judge me or otherwise threaten my safety.

One Friday afternoon, panic hit. It started around my jaw—my muscles tightening, my teeth chattering. It didn’t take long for the panic attack to overwhelm me. My desk suddenly felt unfamiliar, the space hostile.

As I tried to catch my breath, furiously wiping away tears that just kept coming, my supervisor walked by. She stopped and asked if I was okay. “I’m having a panic attack,” was all I could whisper. “I’m okay, though.” With a nod she continued on her way. No one else came by. After a while, I was able to work through it alone, but the rest of my day, unsurprisingly, wasn’t very productive. No one ever followed up with me.

In an empty boardroom—the same boardroom I’d initially been interviewed in—my supervisor told me that it had been a difficult decision, but it was best for all parties. Best for whom? Why was I being fired? What had I done wrong? Why didn’t anyone say anything, coach me, train me? Why was this such a surprise? I was told I wasn’t learning fast enough, not taking enough notes and that I’d been seen crying at my desk. “But I was having a panic attack,” I shot back. “You knew that.” She simply smiled and said, “See? This job isn’t for you.”

As I was escorted out of the office, seething with fury, I wondered whether there would ever be a place for someone like me in the working world. These final, bold and italic words constitute a key reason for the mentioned future article that will detail how people fired for just suffering from mental illness work out, to live.