KANYI GIKONYO Mental Health Survivor Helping Others

Kanyi Gikonyo, 31, is a mental health survivor and shares his experience as a symbol of hope that with the right treatment, it is possible to recover and have a full and productive life. Kanyi says medicines are not the panacea, but only a small part of therapy. He compares medicine to a clutch that helps an individual to stand up but the person has actually to do the walking. He shared his experience with MWAURA MUIGANA.

“I was in high school in 1997 when my hands started turning cold and my forehead very sweaty. My parents suspected a heart condition and consulted several cardiologists who all gave my heart a clean bill of health. One cardiologist referred me to a psychiatrist, who diagnosed me with anxiety disorder. He prescribed anti-anxiety medication and the symptoms disappeared.

Soon I started feeling different about the other students. I was unable to interact and connect with them and slowly drifted to keeping to myself. The psychiatrist re-examined me and said the anxiety disorder had graduated to anxiety depression. He prescribed additional treatment for that as well. In effect, I was diagnosed with bipolar disorder in 2002 for which I’m still on treatment.

Bipolar disorder is a mental unrest characterised by abnormal mood shifts, as well as fluctuations in energy, activity levels and the ability to complete everyday tasks.  It’s a serious mental illness that can damage relationships, career prospects, academic performance and can even lead to suicidal tendencies. A patient with bipolar disorder has severe fluctuations in mood swing, from depression to mania.

The drugs helped me make better decisions, function better and express myself in a coherent manner without forgetting my thoughts or losing concentration. I consequently joined university at the Australian Studies Institute (AUSIE), Nairobi, in 2002. I studied for seven weeks before going down with what doctors called post-traumatic disorder. My brother had committed suicide in 1992 and I was still dealing with that loss ten years on. It interfered with my studies and I eventually dropped out in the middle of an academic year losing the non-refundable fees that run into thousands of shillings.

A long course of treatment followed and I regained normalcy after six months. My parents enrolled me at the London School of Commerce in UK in 1993. I intentionally left behind my medicine when I flew to the UK assuming that I didn’t need them. But my body has an adverse reaction whenever the anti-depressants are discontinued without medical supervision. Therefore, I suffered severe withdrawal symptoms within a week. My parents had to bring me back to Kenya for hospitalisation, which was cheaper than in the UK.

I was admitted at the Chiromo Lane Medical Centre for two months. I am grateful to my parents who covered the bills that were rather expensive. After discharge, I was put on rest from work and school for one year after which I was up and about again. My parents didn’t want me to go back to UK away from the support structure I had in Kenya. Luckily the fee they had paid was refunded and in 2004 I enrolled at the Swiss Management Academy (SMA), Nairobi campus.

I did the three-year degree programme in four years after I fell sick in 2006 and discontinued from my studies for a while. I was depressed and overwhelmed by my condition and I ended up taking an overdose of some medication. I was admitted at the Chiromo Lane Medical Centre for a week but later on resumed studies and graduated with a Bachelors of Business Administration in 2008.

The treatment was three-faced. First, there is a biological problem that needs medicine from a doctor, then there is a psychological problem requiring a psychologist or a counselor, and then the home, school or work environment that we interact with every day. If that environment is not conducive it will affect your mental health. So apart from psychiatrists, I also consulted many psychologists and counsellors for psychotherapy between 1997 and 2006. The therapy sessions were very expensive.

Trouble with employment…

Along the way, I had done some IT courses and decided to work for a software company instead of pursuing business administration, which I had studied. Bipolar has its ups and downs and only one month into the job I had an episode. Bipolar manifests itself through hypomania, meaning there are the mania side and the depressive side. When there is that fluctuation, you tend to behave differently.

One time I was feeling down and became depressed and didn’t want to attend work meetings. I went home and switched off my phone overnight. The next day my boss was so furious with me and I didn’t want to disclose to him about my condition. I resigned from my job without a word. Later I thought it wise to let my employer know exactly what I was going through and got a note from my doctor explaining I had bipolar and that was how it manifests itself.

I dropped it in my boss’s office and left. Seven months later, he approached me and said that he understood my health status. He further proposed that I work on a project the company had embarked on, which I agreed to but eventually things didn’t work out. I left after a week. He approached me again three months later with a consultancy proposal where I would only work when I was feeling well and would choose my working hours. That was a challenge I was ready to take.

Then I began to see the relationship between the hours I worked and the money I was paid. I realised that it wasn’t just about how I felt and acted, but about what I could do. My doctor had challenged me that if I could hold onto a job continuously for three years, I would be on my road to recovery, a challenge I embraced.

I worked for about two-and-a-half years choosing my hours and often working from home. This arrangement for people with mental health issues is called reasonable accommodation where the employer adopts the environment. My thoughtful employer really protected me while I worked for him.

Birds of a feather flock together…

The drugs couldn’t solve all my problems. I needed more information and to interact with someone with my specific or similar condition to compare notes. I didn’t know if any relevant movement for people with mental health issues existed in Kenya. One time, I saw a pamphlet from a South African organisation on depression and decided to write to them. They referred me to the Schizophrenia Association of Kenya and through this support group was connected to the Users and Survivors of Psychiatry in Kenya (USPK) in 2009.

At USPK, I met people with similar or related conditions who provided a community where we came together and exchanged experiences and ideas. It has been key to my recovery. I got the courage to go public about my mental health status and received a lot of encouragement and support. I found out that by sharing the fear of stigma is lessened. In deed I found more support than criticism by sharing experiences with my condition.

Since then I have participated in media interviews and published articles locally and in a South African journal, which has greatly helped in my recovery. The dose of my medication has reduced. I started working at USPK on voluntary basis. For a while my boss allowed me to do both but when the business started expanding and the USPK also grew I let go of my consultancy even though it was a better paying job. I felt that I was touching people’s lives and committed to work fulltime for this great course. It was therapeutic for me because I found my purpose in life.

 At the support group, I drew from my experience to help those suffering from mental health issues or their relatives calling in for information and solutions. We had several people calling in seeking information. The few officials and I were burning out and we decided to start a peer support group session where we came and reasoned together as peers since we have gone through different mental health issues. We called it ‘experts by experience’ by virtue of being experts of our own different experiences.

We go through individual experiences then compare notes and pick the best practices. Currently we’re addressing persons with mental health issues and enhancing their participation to reduce their vulnerability in society. After volunteering for some time, I became a board member then board chairman and currently I am the CEO. The support programme has 40 members in Nairobi and is being implemented in five counties. Already support groups have been established in Kiambu and Karatina with a membership of 20 and 25 respectively. The process is in progress to establish support groups in Nakuru and Eldoret in the next few months.

 The support group programme also empowers people affected, as well as their families, to understand and claim their rights. There is also the whole aspect of self-management so that they can live productively. We also hold awareness creation within their communities so that we can fight stigma and discrimination, in addition to media monitoring of what is written about mental health issues. This is in line with plans to develop a report that will be used to engage different stakeholders so that we can sensitise them on reporting about issues of mental health. Often there is representation or use of derogatory words which are very hurtful to people suffering from mental health and their loved ones.

The programme does a lot on policy and legislation because persons with mental issues are marginalised. We have been participating in the Mental Health Care Bill, the Legal Aids Bill and working on issues of mental health in the criminal justice system. For instance, what that happens to those who are sick and are in prisons? We have also worked with the human rights commission on legal capacity that deals with a person to make decision.

Invest in a doctor-patient relationship…

From my experience, a good relationship with your doctor is key because your doctor is your partner. Unfortunately most doctors treat you as a subordinate not a partner. They don’t explain the treatment or the reason you’re taking that type of drug. Fortunately my doctor explains to me the process. If I am adamant about something he asks me to explain why it makes sense not to take medicine. We engage each other on that level and have become trustworthy friends.

Despite the doctor-patient relationship, one has to take personal responsibility for their social issues. For instance, when I couldn’t reconcile with my brother’s suicide, I wasted ten years trying to make sense of it, blaming myself for it. It interrupted my school and it was a big loss.  All it would have taken was to find someone to talk to such as a counselor immediately the suicide happened. One has to find a way of dealing with issues otherwise they eat into one’s life later on.

Recovery is not just about taking medicine. There has to be a holistic approach including the work, home or school environment, because environment can be a source of problems. Often drugs are very expensive and a child with a mental condition will greatly be affected if the family considers him or her a financial burden.

Published on April 2013