My road to recovery has been long and expensive

My name is Samuel Boiyo. I have been suffering from a mental disorder for 10 years.

My problem started when I was in secondary school but got worse in adulthood.

On the two times I fell critically ill, I was taken to jail instead of being taken to hospital.

The first was in April 2006, when, four days after getting a job as a waiter in a restaurant in Nairobi West, I got involved in a scuffle with my colleagues. They called the boss, claiming I had beaten one of them.

The boss called my sister, who told them I unwell. Apparently, she had noticed something unusual about me a few days back, and that morning before I left for work, I had been behaving “abnormally”.

When you are the patient, you don’t quite appreciate the absurdity of your behaviour because honestly, I don’t remember behaving oddly at any time.

Anyway, by the time my sister got to my place of work, I was in a cell at the Nyayo Stadium Police Post. She says when she came to bail me out, I scolded and told her off.

At dusk I was taken to the Langata Police Station, where I was badly beaten by police officers for “being uncooperative and a nuisance”; my cellmates also beat me “for being an irritant”. Apparently, I was singing and praying loudly the whole time. They kept saying “Ni chizi (He’s crazy)” as they beat me.

Eventually, my sister bailed me out and took me straight home to Elburgon.  My parents took me to the Elburgon Hospital where I was injected with Modecate, an antipsychotic drug that helps control aggression and hallucinations. I was also treated with Chlorpromazine (CPZ) an  antipsychotic medication also known as Thorazine or Largactil. That was my first encounter with these drugs, which had too many undesirable side-effects.

After that I was taken back home, where I stayed for a year.

The second incident occurred when I was attending an overnight church service at Our Lady Queen of Peace Catholic Church in Nairobi’s South B. I am told I went to the pulpit and interrupted the service, after which I went outside and sang throughout the night.

CAUSED A LOT OF COMMOTION

At dawn I wandered into another evangelical church, dirty and shabby.  I made to remove a bag from a chair so that I could sit on it but the owner of the handbag, who was sitting on the next seat,  shooed me away. But I was determined to sit on that particular seat. The woman caused a commotion and the next thing I knew, a guard had come and pushed me out, beaten me and called the police.

I ended up back at the Langata Police Station, this time for attempted theft. The court process began and I was remanded at the Industrial Area prison in an isolation block for people displaying psychiatric behaviour.

I was injected with CPZ and remained in a zombie-like state for three days.  I was in prison for five months, receiving the CPZ injections to manage my condition. I was taken to Mathari Hospital once but received no treatment. The doctor who saw me said I should be taken back to prison.

Luckily, the woman whose bag I had touched in church somehow heard about my situation and withdrew the case, so I was released. 

Thereafter I was taken to Mathari Hospital, where I was admitted for three months. I was treated with Haloperidol — a drug that gave me seizures so I had to take Carbamazepine (Telogretol) to control the convulsions — Quetiapine and CPZ. But these drugs made my limbs stiff. 

They work like tranquilizers. Your brain sort of remains inert. I would just be there like a zombie, dull and unseeing. My hands felt rubbery. My appetite increased but the problem is that in prison and hospital, you don’t have food readily  at your disposal like at home.

After a few weeks on the drugs, I could no longer think or speak articulately, and I also lost my self-confidence.  After a week on Haloperidol, my speech became slurred. My tongue felt extremely heavy and no matter how hard I tried, I couldn’t say anything out loud and could speak only with the greatest difficulty. My life was characterised by gibberish talk, drooling and tremors.

It was then that I realised that the drugs were only making things worse.

Between 2007 and 2012, I was in and out of Mathari Hospital. I hated taking the drugs that numbed my body and mind, so I began this  rebellion inwardly; whenever I could, I refused to take the drugs.

In June 2010, four years after I was diagnosed with a mental illness, it turned out my condition had been misdiagnosed. I had been receiving treatment for schizophrenia when in fact, I had bipolar disorder, Dr Victoria Wamukoma, the new doctor who saw me, said.

RADICAL MOOD CHANGES

The condition is characterised by radical mood changes, ranging from periods of elation to feelings of depression or hopelessness.

When you are hyper, you think of great things and people. You talk a lot, fast and excitedly.  You are distracted, have increased libido and are obsessive about things.

For instance, there was a time I was listening to the radio and believed it was talking to me. Then there was a time I spent almost the whole day showering. There were also times I’d go for days without sleep and others when I would not get out of bed. 

When you are low you, you isolate and neglect yourself, and have suicidal thoughts.

The doctor explained the manic phases of bipolar disorder, saying in can cause euphoria, or irritability that leads to violence; that explained my violent outbursts.

She said that to stabilise my condition to enable me to live a normal life, I would have to be on medication for life.

Dr Wamukoma told me about the second- or new-generation drugs which, though expensive, are more effective. And since I started taking them, my condition has stabilised. And unlike when I was on the first-generation drugs, I have not had a relapse.

Now I mostly try to remain healthy. You could say I work to stay sane. Every day I take two tablets: Escitalopram (Lexapro or Cipralex), a mood stabiliser in the morning, and Aripiprazole, an anti-psychotic, in the evening. Without them I would still be what people call “chizi” (crazy). The drugs are not a cure for my condition but manage it.

The problem is that they are beyond my means. As a hawker, I earn about Sh200 a day, and sometimes nothing.  Every morning I buy  one Escitalopram tablet for Sh79 and an Aripiprazole tablet for Sh84 on in the evening at a cheap chemist I found in CBD.

The medication is not available at government hospitals like Mathari. Only Aripiprazole is available there at Sh50 each when pharmacies want to dispose of drugs that are about to expire. At such times if I have money, I buy  them in bulk. Unfortunately, they’ve never had Escitalopram.

MADE FRIENDS

I have made friends with people at the hospital who alert me whenever they re-stock because the drugs run out fast. I have to buy the medicine, even if it means going hungry.  It is the price I have to pay to function normally and live a useful life.

Since I need the drugs for the rest of life, no one in my family can  support me, so I must make the sacrifice myself. They are better than the first-generation drugs, which cost between Sh2 and Sh5 per tablet at Mathari.

Mental illnesses hits poor extremely hard in Kenya. My journey back to sanity has been a pricey affair, one during which I have had to make lots of sacrifices. I wish the government could do something about the availability and cost of drugs.

Still, I consider myself lucky.  I have recovered while many don’t. But I believe that anyone can recover. That is why I want to start a patients-for-patients-run organisation.

I would like other patients to recover and become empowered like me.  I want people suffering from mental problems to regain control of their lives and the resources that affect their lives.

I want to be a psychiatric survivor activist and speak out on behalf of those I left behind in that gloomy world.

The side-effects of the first-generation drugs are degrading. Is it possible for the government to make life better for us? Is there something the government can do for those of us who are too poor to afford the better, second-generation medication?

Many are being treated with medicine that is not ideal for them. 

I am not advocating that patients stop taking the first-generation psychiatric drugs. What I am saying is that I wish the government would do for mental health patients what it has done for people with other chronic illnesses, that it  get the new-generation drugs and subsidise them so that it makes them more affordable for us.

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The high cost of mental illness

The drugs for managing these conditions must be taken for long periods, yet they are beyond the means of most people. Inside, one survivor shares his story

New generation drugs are better, but most people can’t afford them

Dr Ngugi Gatere, a consultant psychiatrist, says most first-generation antipsychotics, especially when used in high doses — as often happens — have extrapyramidal effects. These include dystonia (continuous spasms and muscle contractions), akathisia (motor restlessness), parkinsonism (rigidity), bradykinesia (slowness of movement), and tardive dyskinesia (tremors, drooling and irregular jerky movements).

He says tardive dyskinesia is the most severe form of dyskinesia and has no remedy, although giving the patient new-generation drugs can help.

He adds that while they would like to recommend that patients take the second-generation drugs which have fewer side effect, they are too expensive for most patients.

“In spite of the side-effects, the first-generation drugs are quite effective,” he says, adding that  the newer drugs are better because they are condition-specific, and hence have fewer side effects. Meanwhile the old drugs work on many areas of the brain, hence their many side- effects.

As the functions of the various parts of brain are revealed through research, drugs that target specific areas and receptors can be manufactured.

“Most patients get them [mental illnesses] between the ages of 15 and 25 years (men) and  between 25 and 35 years (women). Many are jobless, so they depend on others to buy them the medication. Often, these drugs financially drain  those paying for the treatment, or they get tired or exhaust their resources and stop because buying medication that costs almost Sh100 a day for the rest of a  person’s life isn’t easy. That is why patients get abandoned and have to rely on government medication,” says Dr Gatere, adding that the government should subsidize he treatment of chronic mental illnesses just  like it has done for other chronic illnesses.”

He says out of 80 patients, only about 10 can afford the second-generation drugs. 

Meanwhile, the medical superintendent at Mathari Hospital, Dr Julius Ogato, says that since affordability determines compliance in  taking medicine, the hospital  prescribes drugs that the patient can afford, taking their socio-economic situation into consideration. “If we prescribe medicine that you cannot afford, then we haven’t helped you,” he says.

By not treating the mentally ill with the appropriate drugs, the country is losing a good majority of the estimated 5million mental health patients to un-productivity.

It remains to be seen whether the recently adopted Kenya Health Mental Policy 2015-2030 will help this long-neglected group.

A neglected area

Mental healthcare receives little attention in the country and remains a low policy and budget priority.

Less than 1 per cent of the Ministry of Health’s budget goes to the national health facilities, according to Dr Simon Njuguna, the Deputy Director of Mental Health

 Mental patients account for 12 per cent of the population, according to Dr Catherine Syengo, the deputy head of the Mental Health Unit.