Wed. Dec 18th, 2024
Occasional Digest - a story for you

“Why don’t you just get married?” 

This was what a doctor told Rahma Jamila Hassan when she complained about her inability to go to school at the tender age of 15. Now, while still battling multiple health conditions at the age of 24, her experience in the Nigerian healthcare system has not improved much. 

This experience is not just specific to Rahma. Women are more likely than their male counterparts to go through medical misdiagnosis, dismissal, and gaslighting.

Her crisis, which started about two years earlier, is still a puzzle for the doctors, and that affects how she is treated. “I have many unpleasant experiences with the doctors, but I have a mental blockage on most of them, so I won’t be able to recall many,” she said. 

Rahma had a pretty normal childhood until she started getting sick. What started with severe chest pain, anaemia and trouble breathing led to a referral to a cardiologist who later diagnosed her with Rheumatic Heart Disease (RHD). He prescribed medications and an injection that she was expected to take monthly for ten years.

“We were advised to see a cardiologist by a doctor at Barau Dikko Teaching Hospital [in Kaduna, North West Nigeria]. Then I saw another doctor at 44 [Nigerian Army Reference] Hospital before I finally started seeing the cardiologist who made the diagnosis at a private hospital in Unguwan Rimi, Kaduna state.” 

But the prescription didn’t work as expected. He even suggested that she start taking it on a three-weekly basis instead. 

“We kept going for appointments until I finally stopped after four years of taking the injections. I still visited different hospitals after that, including Ahmadu Bello University Teaching Hospital, Shika in Zaria, where they said the doctor I saw was the best in the field, so the diagnosis couldn’t be wrong even though things remained the same.”  

Eventually, in 2019, she was referred to a hospital in Lagos when recurring crises forced her to defer a semester in her first year at university. It was then confirmed that she never had RHD, which was a big shock to her because she had lived so many years believing she did. They instead suggested that a thinning in her lungs may have caused her crisis, but they weren’t sure about that diagnosis either. 

Chronic illnesses cause 63 per cent (approximately 29 million) of deaths globally, and this may be worse in developing countries like Nigeria as a result of limited access to health services that help in the management and early detection of these conditions. A study conducted in Nigeria indicates that 64.9 per cent of the population has experienced some kind of chronic illness. 

A trail of misdiagnosis 

Rheumatic Heart Disease is not the only misdiagnosis Rahma has experienced. More misdiagnoses from different hospitals will be something she will have to battle with for the next few years. 

The latest one was an asthmatic diagnosis due to the trouble she sometimes has breathing. It usually comes up randomly; sometimes, it could be triggered by smoke. Earlier this year, after she ran some more tests, she was told she didn’t have asthma, and it might be some other issue they couldn’t seem to figure out.

Symptoms like seizures, breathing problems, anaemia and the inability to do activities are not the only things she deals with. Most of the prescriptions she gets also have terrible side effects that trigger other issues. 

“The first medical side effect I can remember is when I had painful rashes that came with blood blisters. We later realised that the medication was too powerful for my age. I was 15 back then. Then I started having seizures, and I was later told they were chemically induced due to medical side effects.”

Sometimes, she experiences persistent headaches and severe weakness. There was a time I couldn’t see correctly for roughly a day due to a neurological medication she was put on. 

Gender bias in scientific research affects biomedical research, which makes women more prone to experiencing adverse reactions to drugs as opposed to men due to the myth that women are just smaller versions of men. Studies have shown this could result from physiological gender differences, which affect how drugs are absorbed, distributed and even eliminated in the body. 

According to Dr Erin Nance, an orthopaedic hand and wrist surgeon who uses social media to shed light on the misdiagnosis that women face in healthcare, rare autoimmune disorders present differently in women, leading to misdiagnosis in the healthcare systems. 

Rahma used to pretend that her health had improved just so she could make people around her feel better, but this made coping even harder than it ought to be, leading to both mental and physical exhaustion. Research has shown that chronically ill people tend to struggle with a phenomenon known as ‘health-related guilt,’ which leads to social isolation, poorer mental health, and even making their conditions feel worse.

“When I was much younger, it did affect my mental health a lot. I became severely depressed. I had to start taking antidepressants, which just made me sleep a lot. Gradually, I started learning how to cope, and even though my days are still not the best sometimes, they are very manageable.”

The stigma that also comes with being sick and the mental strain of moving from healthy to unhealthy and barely functional also made things harder on her mental health. 

Rahma didn’t get to go out, which automatically led her to become a secluded introvert. She was never an outdoor person, but her condition robbed her of the chance to choose. Most of the time, if she forced herself to partake in such activities, it triggered massive flare-ups and took her a long time to recover.  

A setback in education 

“Due to my health condition, I had to drop out of Senior Secondary School because I could no longer cope. Junior year was a big hurdle on its own. Afterwards, I read as much as I could because my hobby is reading and writing. I kept doing just that and I did enjoy it,” Rahma said.

She started homeschooling and taking a special lesson to prepare her for the West African Senior School Certificate Examination (WASSCE), which she couldn’t complete after a few months due to recurring health crises.

When she finally got to write the exam and the Unified Tertiary Matriculation Examination (UTME), she didn’t gain admission on her first try. The following year, she entered Kaduna State University (KASU) to study Sociology.

Rahma stayed off-campus until her graduation in 2023. It also helped that her circle of university friends were supportive.

“I remember there were times I had to go write exams while sick or just getting discharged from the hospital, and other times I got sick in the exam hall. It was a hurdle when I had to juggle two semesters because I didn’t want to spill, but I was still able to make it. I feel grateful for that.” 

It’s still challenging for someone as chronically ill as her to get a job or even an internship. “I currently can’t go for service until I can cope to some extent. There is a certain stereotype attached to chronic illnesses, especially when you are not getting properly diagnosed. Everyone looks at you like you are not doing enough or that it is a choice, and  that’s why you are refusing to get better.” 

Even though she was never a social child growing up, she still loved playing with her friends. But that slowly changed as she grew older because of constant crises and hospital visits, and her friends had to move on with their lives.

“I honestly don’t care anymore; I just try to stay alive while I indulge in some activities I can while I can, but I am in bed most of the time.”

Rahma Jamila Hassan’s story reflects the challenges faced by women in the Nigerian healthcare system, including medical misdiagnosis, dismissal, and gaslighting. Initially diagnosed with Rheumatic Heart Disease (RHD), Rahma endured ineffective treatments and endured a series of misdiagnoses over the years.

Despite multiple consultations, her actual condition remains unidentified, highlighting issues within healthcare systems, particularly for women, who are more prone to adverse drug reactions due to gender bias in biomedical research.

Beyond health struggles, Rahma’s condition has significantly disrupted her education and social life. She had to drop out of school, resorted to homeschooling, and faced difficulties while trying to complete her studies. Despite graduating in 2023, finding employment or internships is challenging due to chronic illness stereotypes.

These experiences illustrate the broader challenges faced by chronically ill individuals, including mental health strains, societal stigma, and limited educational and career opportunities.

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