In my late teens, I began hearing sounds in my right ear, and then much later, the left. That was fifteen years ago, and the closest diagnosis I have been given up until now is pulsatile tinnitus – a condition that equips me with the ultimate hi-def pleasure of hearing and, oftentimes, dancing to the tune of my own heartbeat. The sound can be described as a pounding or whooshing noise, which can be unsettling and debilitating at times.
The most common causes of pulsatile tinnitus are conductive hearing loss and a slew of heart diseases and blood vessel disorders, none of which, according to the battery of sophisticated and expensive tests I have done, relate to me. Specifically, my MRIs, Doppler scans, and conduction and hearing tests all came out clean: no underlying condition could be traced to my symptoms.
The first time I told a doctor in Nigeria about it, I was told it was all in my head. That was not very encouraging, to say the least.
My symptoms are worse at night, away from the humdrum of the city, causing me increased irritability. So I manage it as best as I can: ear plugs, earbuds, and not thinking about it are some of the ways that have considerably helped. For the most part, I have been able to cope with it. It doesn’t really affect me, except when it does. I think it’s bad enough having this.
Now hold on to the above image for a while, and imagine that rather than hearing your heartbeat, you hear actual voices. Voices that can neither be drowned by loud music nor silenced by earplugs or earphones, and having unique characteristics, names, and personalities to boot. This is just a tidbit of what those with schizophrenia go through.
Schizophrenia, then, is a complex, chronic psychiatric disorder that includes many symptoms, including delusions, hallucination, paranoia, disorganized speech and behavior, and estimated to affect 1% of adults globally. The causes are unknown, but it is speculated that genetic, perinatal, and environmental (including social stressors) factors, and altered brain chemistry and structure might play a role. Schizophrenia also presents with “positive” and “negative” symptoms, which provides for a more meaningful understanding of the complexity of the disease.
Positive symptoms are “positive” psychotic behaviours, which are not generally observed in healthy people — also so-called for when symptoms that the person was not experiencing before begins to happen. Examples include hallucinations, delusions, and agitations. Negative symptoms, which are the most debilitating to quality of life and whose long-term effect may include disability and loss of productivity, refer to symptoms arising from the patients’ consequent loss of certain normal functions. These include reduced speech and psychomotor activities, inability to experience pleasure, limited social interactions, and lack of desire to form relationships. Negative symptoms are worse not because they are “negative,” but because it is easier to lose what was added (as in positive symptoms) than to regain what was taken (as in negative symptoms). While most antipsychotics can help with positive symptoms, negative symptoms do not respond as well.
Diagnosing schizophrenia can be quite difficult, as there are no objective indicators. Therefore, medical doctors rely on patients’ self-reported experiences, as well as abnormalities in behaviours to make a clinical assessment. To be eventually diagnosed, at least two diagnostic criteria have to be met for a defined period, with a pattern of behaviour and some level of dysfunction. Antipsychotic medications and psychotherapy, in addition to adjunctive treatment (such as antidepressants, if needed), and social support are major forms of treatment of schizophrenia.
Schizophrenia often significantly impacts a person’s ability to function — this may limit their reintegration into the community. There is also a higher rate of suicide in people with schizophrenia, as well as a higher likelihood of being victims rather than the perpetrators of violent crimes, contrary to what has been portrayed in the media.
Schizophrenia outcomes have also been found to be better for patients in developed countries than in developing ones like Nigeria. Most of what I know about schizophrenia, I learned when I was in pharmacy school. I have also gleaned a little from the media (mostly bad information) and via reading books. I had never met anyone who opened up to me about having schizophrenia. Not until I met Sis.
Sis and I met on FIN, way back in the good old days, on a post I had openly shared about my struggles with intermittent bouts of depression and anxiety. That post had garnered hundreds of comments, but for one reason or the other, hers stood out to me from the deluge of responses. From then on, we became friends, and then sisters – moving our conversation from the vagueness and fakeness of social media to deep conversations on WhatsApp. Three years passed, and she finally summoned the courage and had had enough trust in me then to share her burden with me, of how she had been living with schizophrenia for years. To say I was a bit shocked about all she was going through would be an understatement. “I could never have guessed,” is indeed a prevailing theme when such discoveries are made.
Sis, who is in her 30s, currently lives in the south-south part of Nigeria and, according to her, had an idyllic childhood growing up. But everything changed in her late 20s. She was sexually abused and molested in the church she had volunteered to serve for a year. According to her, this was the trigger that led to the eventual diagnosis of her schizophrenia.
Shortly after, she left that job and moved to Lagos to begin another career. Her symptoms started not too long after relocating, and were at first visual and then auditory, in a description so bizarre that it leaves a lot of room for wonder. Her family rallied around her, taking her to churches and prayer houses, in a bid to get answers to her strange behaviors. She lost her voice shortly after, and had very limited interaction with her environment; a likely diagnosis of catatonic schizophrenia. During this time, she lost her job, and months went by before her mother, at the suggestion of a friend, decided to take her to the psychiatric hospital in Yaba, where she was diagnosed with schizophrenia.
Delaying treatment from the onset of the symptoms had made her condition go from bad to worse. The voices, which were mostly inaudible in the beginning, had now grown to three distinct voices, becoming uncontrollable — an experience she likens to a cacophonous orchestral performance without a conductor. During my chat with Sis, she gave a detailed account of these voices and their personalities.
Emem (which means peace in her native tongue – Ibibio), speculated to be eight years old, speaks in a cartoonish voice and has the exuberance of an impish child. Emem is the one Sis would likely want to get voted off the Island, due to how petulant she can be.
Christopher plays the baritone character of the ideal boyfriend who is trying desperately to woo Sis’s affection.
Lastly, Yetunde is in a one-sided relationship with Christopher, and the nature of this unrequited love makes for a fairytale love triangle. She’s grown to be dependent on these voices. They keep her busy, honest, and accountable. Nothing is hidden, as they remind her of forgotten memories and hold her accountable for misdeeds. I liken them to supercomputers of thought processes externalized. Sis has taken advantage of this situation, and her story captures the beautiful, awe-inspiring side of schizophrenia that gets left out of the public narrative. For example, she describes her voices as very helpful in navigating the complexity of the world around her. In fact, they have ‘helped’ switch her personality type to a more confident, assertive one. She even asserts to possessing some clairvoyance and the ability to detect lies easily.
Initially, she was easily irritable and would not acknowledge their existence, which made things worse, until she started her medications. Medications helped her manage the voices well, rather than make them go away. I chalk this up to delayed treatment. She also stopped taking her medications more than a year ago, due to how much weight gain she experienced, as well as their exorbitant cost. For the latter, I suggested talking to her doctor and pharmacist to place her on generic versions of the medications as a cost-saving mechanism. Plus, I was able to raise some donations recently to secure get a year-long supply of medications for her.
Colours like pink excite the voices, and in this state, they are less disturbing and more tolerable. So, she dons herself and her living room walls in this bright color. Noises from running taps, rain pelting hard on corrugated roofs, and generator sets, trigger her symptoms, increasing the cacophony of the voices, thus making her more irritable.
Schizophrenia cases are not all the same; what triggers one person’s symptoms might be innocuous to another. Unlike depression and anxiety, which are the Cadillac of mental health issues and are hashtag-worthy, schizophrenia has not been given the attention it deserves. As a result, a lot of sufferers suffer stigma, and are therefore less likely to talk about their condition openly. The invisibility of the stigma and discrimination compounds the experiences of those suffering from the disease, and their consequent reticence and disengagement further establish the stereotypes and mischaracterizations.
Sis is exceptionally bright and has a strong command of the English language. She is highly perceptive and exudes confidence without coming off as shallow. She is still strong in her faith and has found a much better Christian community. She is also empathetic and quick to apologize for easily-overlooked grievances. She has great administrative and organisational skills, and yearns to be given another opportunity and be provided the space to apply these skills in a job or vocational setting. She loves her voices (except Emem, of course) and has found a way to harmonize them; a feat she credits to psychotherapy and pharmacotherapy. However, she admits how strange her situation is, and how its uniqueness places her in a category that’s unacceptable in society. Yet, in another moment of ambiguity, she expressed a tinge of sadness for the time when the voices will disappear – likening this to losing her superpowers. Her dependence on these voices has made her a lot more withdrawn, preferring her own company to others. This is the most troubling aspect.
My overall experience with Sis has humbled me and given me a renewed outlook on the complexity and beauty of the human mind – far beyond what I know from my many years as a practicing pharmacist and information forager. But then, this raises some questions: pathological sources aside, could the hallucinations be a spiritual transformation, especially considering that these voices are thoughts externalised? Need we then label these conditions as abnormal for our lack of understanding of their whys? As a professional consideration, a psychotic condition would probably not pass as not being abnormal. But the validity of the point as stated in the article is something which I would consider as belonging in the field of Philosophy.
As a whole, our knowledge of psychotic disorders is still limited, and research has not significantly advanced in identifying the root causes of these issues. Pending then, the best we can do is be supportive and create space for exploration and affirmation, as well as for listening and empathizing. It’s why I am writing this piece, in the hopes that someone out there like Sis reads this, and knows that they are not alone. Let’s build a community, speak up and advocate for those with mental health issues.
Together, let’s rise!
PS: Sis needs a community of people with schizophrenia. If you are or know someone with schizophrenia (and in need of a support system), kindly contact me at [email protected] so I can make the introductions. I am also raising additional money for her to chronicle her story and experiences as a Nigerian living with schizophrenia via a lifestyle YouTube channel. Your donation will aid in purchasing a laptop, 4G phone, monthly data, a small stipend, etc. I have been mentoring her for some months now, and will continue to provide guidance as well when she gets started until she reaches a point of self-determination. Interested persons can also contact me for more information.
To listen to the one-hour long episode with more context around her diagnosis, symptoms, and life in general that I did with Sis on my podcast show, listen/download link: bit.ly/resurgam_2019
Got a story to set free? Or an issue to build community around? Let me help you share your story. Email me at [email protected]
Special thanks to Olalekan Kolawole and Ayomide Adebayo for their professional input in putting this article together, and to Joannah Otashu for her editing prowess.
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