Profile of an Inspirational PeerPeer Stories

Monthly profile of an inspirational Peer: Jeanette

Jeanette was in her final year of University in 2011. She was studying for a degree in Economics in Kampala and living with her family. During the last semester, as the pressure of her final exams was beginning to grow, Jeanette’s family started to notice that she was talking a lot and making funny comments about people. She was not making sense. This was very out of character for Jeanette, and her family became concerned. Jeanette herself felt very excited and energetic about life. She knew her exams were soon approaching, but instead of attending classes, she began to spend all day walking aimlessly, she couldn’t concentrate, in fact she was barely eating as she was so distracted.

As the weeks quickly passed, Jeanette soon realised that there was not enough time to study and she began to fear that she would not pass her exams. This led Jeanette to feel very stressed and anxious. So much so, she started crying and at times this could last all night. She was hardly sleeping. Her family became even more concerned. Her mood appeared to be swinging from one extreme to the other. At times she would feel powerful, she thought she would graduate soon. Other times she feared the exams and cried.

Throughout this time, Jeanette’s classmates called her, to find out where she was. Sometimes she would pick up, and say she was coming, but she knew this was a lie. Then Jeanette lost her phone.

As the weeks past, Jeanette’s family tried their best to cope alone. They tried to keep Jeanette inside by locking the house. However, Jeanette found the key and was able to get out. She felt she had important things she needed to do, and at times would return late at night. The neighbours were talking about Jeanette, because they too had noticed the change in her behaviour. Some believed she was pretending she was sick to avoid the exams. After four weeks, Jeanette’s father decided it was time to seek help. He said, “Jeanette, let’s go to see the doctor”. Jeanette agreed. She knew something was not right, but she didn’t know what.

At first, Jeanette spent 3 days at a nearby clinic. After having numerous tests, such as for malaria and finding nothing, the doctors advised her father to take her to Butabika, the National Psychiatry Referral Hospital. Jeanette’s father was receptive to this and brought Jeanette to the outpatient department. At Butabika, the doctors realised that Jeanette’s symptoms, of talkativeness, lack of sleep and personal neglect may all be symptoms of a mental health condition, called bipolar disorder. They told her father that Jeanette needed to have an injection and be admitted.  Jeanette’s sister was not allowed to stay with her, and Jeanette felt scared when she arrived on the ward.

Jeanette spent 3 weeks in hospital. This was a challenging time, being separated from her family. She began to receive tablet medication. These medications reduced the symptoms, but led to feeling drowsy, and sleeping all day. During this time, Jeanette’s family visited regularly and one day they were able to take Jeanette home, provided she continued her medication and came back for review.

Although Jeanette now had a diagnosis of bipolar disorder, and was prescribed medication, the next five years of her life was interrupted by relapses and readmissions to hospital. Although she was able to complete her degree, she wasn’t able to progress further with her career. Jeanette denied her situation and refused to believe she needed medication. During this time, Jeanette would throw her medication away, and not come for her reviews. Even when she had money for transport, she would stop on the way. Jeanette’s family believed she was taking treatment and did not understand why she so frequently felt depressed, or overly energetic, or at times both.

In 2016, Jeanette was admitted to hospital and staying in the female recovery ward, when somebody approached her and asked her name. Jeanette was surprised when Angela introduced herself as a peer support worker. She had never heard of peer support before. Angela spoke to Jeanette for some time, she explained that she too had bipolar disorder, and offered to visit her at home.

From this point, Jeanette began to meet Angela every month. During these visits, Angela shared her story and experience of recovery. Through these meetings, Jeanette began to realise that she wasn’t alone. Angela had experienced challenges too, but she was still strong. This was life changing. Jeanette began to accept her diagnosis of bipolar disorder. She realised her first episode at University was triggered by pressure to succeed in exams, and the feeling of missing support from her mother, who had passed away two years before. Looking back, Jeanette could see that she had not been able to grieve her mother’s death, instead feeling she had to stay strong for her family.

With this new understanding, Jeanette regretted the time she had wasted. She came to see that mental illness is like any other sickness. You can live with it usefully, without it being a hindrance to your success. From this point on, Jeanette began to take her medication. It took some time to see the benefit, but Jeanette believed that as it had worked for Angela, it would work for her.

Following this, Jeanette’s relapses decreased. In fact, she began to work as a peer support worker herself. This allowed her to offer the same support to others that she had received. She recalls one peer she supported. At first, she struggled to find him. Then, with the help of the LC chairman, she found him at his house, tired and sickly. Then Jeanette met the peer’s mother, who was rude, and did not accept her son was ill. However, with the help of the community outreach team from Butabika Hospital, Jeanette was able to sensitise the family to mental health problems, and transport was arranged for the peer to receive treatment in hospital. In the end, the mother was grateful, and this gave Jeanette the courage to continue her work. Now, after many years, Jeanette can see how vital peer support is. Her story is a powerful tool to share with people. Through peer support, people can begin to believe in themselves and build a structure to their lives that supports recovery.

Jeanette now believes the main problem is people hiding their challenges, instead of opening out and sharing. The tragedy is, people live with sickness, even though treatment is available. This is because of the stigma in society towards mental illness. How society treats people with mental illness affects how they think of themselves. Jeanette hopes for a future where there is more funding for mental health services and peer support in Uganda.

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Monthly profile of An inspirational Peer – Teddy’s story

Teddy’s story

Looking back, Teddy believes her illness started when she was young. After a case of cerebral malaria, she was taken to medical hospitals, received treatment and seemed to improve. Neither her nor her guardians knew anything about mental illness.

However, when she was in her second year at University, she went to the village for family annual meetings. There she found that all her family were against her, they said she was going astray and criticised her behaviour. As a punishment, all of her hair was cut off. She returned to Kampala feeling so bad, she stayed in bed all day and wouldn’t eat. She cried and felt like she wanted to kill herself. She was supposed to be doing examinations, but she was weak and couldn’t read. She was going to miss them.

Teddy lived with her Auntie in Kampala, who took her to the University clinic. They recognised a mental health challenge and referred her to Butabika Hospital. At Butabika, a psychiatrist asked Teddy about her life story and diagnosed her with Bipolar disorder. She was experiencing a depressive episode and needed treatment.

The psychiatrist also explained to Teddy and her Auntie that Bipolar disorder may run in the family. It can be generational. However, Teddy’s aunt took this badly. She felt criticised and blamed, as if the problem was coming from home. Looking back, Teddy thinks this was a big misunderstanding. Unfortunately, it had repercussions later.

Teddy was admitted to Butabika that day. It was so unsettling to be in a new environment, but she recalls her cousin brother who visited every day, bringing food and new clothes. She says, “he was my consolation”. She stayed in hospital for a month, missing her University examinations. She was prescribed ECT treatment. This is where you are put to sleep and an electrical current is passed through your head to induce a seizure. It is a treatment for severe depression, which can be of benefit to some people. Teddy remembers being put on a bed, and a nurse saying, “Is it ready?”. She didn’t feel anything and hasn’t experienced any side effects. She was told it helps you to get new thoughts.

After a month she was discharged with medication, which she took daily. She was able to return to University and complete her course. However, in the run up to her Uncle’s wedding, which was to be a large event for the whole family, Teddy became overly excited. She was not sleeping and was talking a lot. It was abnormal and increasing on a daily basis. She was brought back to Butabika and admitted with a manic relapse.

After things settled down, she was discharged again. As she was taking lithium, she needed to go for regular blood checks. Everything was becoming expensive, and her Auntie was fed up. It didn’t help that she had felt criticised by the doctor at Butabika – thinking “the problem is at home” – although perhaps this was just a misunderstanding. Teddy was sent away. After living in the house from P5, she felt rejected.

She moved in with another Auntie who said, “you are not sick, you are making yourself sick, this medication is so expensive, it will disturb you, you will not produce”. Lacking family support, Teddy defaulted on her medication. Soon, she was readmitted to Butabika. She felt depressed and was suicidal. She did not feel loved.

At this stage in her life, Teddy decided to join a Missionary group. She was taken to Kenya. They did not know about her mental health challenges, and Teddy convinced herself she was not sick. She didn’t take medication and over the next three years the excitements and depressions would come. At times she would be taken to hospital. Nobody recognised the signs. After three years, her contract terminated, and she returned to Uganda. She felt depressed but did not want to go to Butabika – the stigma was too great to bear. Her brother found her in such a low state at her father’s house that he took her to Bosa Mental Health Unit at Mulago Hospital, crying, “what has happened to my sister?”

This time, on discharge from hospital, Teddy was referred to HeartSounds, a peer support organisation for mental health challenges in Uganda. When she went, she found lively people who were mental health users. Before, Teddy didn’t know anyone else experiencing mental health challenges. Now, she had peers to guide her and counsel her. It helped her so much. She was also chosen to receive training as a peer support worker. She became so active, “I used to say I’m useless, now I saw that I’m productive”. Since then, she has not suffered any more relapses.

Teddy now has a partner who accepts her and supports her, and two children. She is running a successful book making business and takes part in activities for Peer Nation, so she can use her lived experience to help others.

By sharing her story, Teddy has demonstrated that medication for mental health challenges does not affect fertility. She has two healthy children. Also, Teddy is able to provide for her family through her peer support work and business. Finally, she asks for family members and carers of people with mental health challenges to love and support them. Looking back on her first admission at Butabika, she says “if I hadn’t been supported by this cousin brother of mine, life would have been different”.

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