Heavy bleeding and painful cramps are shadows hanging over Maimunah Abba’s* life and they are stealing so much from her.
In August 2019, Maimunah started having very heavy bleeding. “I was used to heavy bleeding and long days of menstral period, but that episode was unlike anything I have ever experienced. I bled for almost two months and I was afraid it was never going to stop,” she recalls.
This bleeding was accompanied by intense feelings of weakness, vomiting, and dizziness. Maimunah’s Aunt who worked at a private hospital took her to one of the gynecologists on duty but they couldn’t find the cause.
Medical Misdiagnosis and Negligence
In February 2020, Maimunah collapsed and was rushed to the hospital where she received a blood transfusion.
“I received four pints of blood,” she remembers.
“The doctor I saw made me feel uncomfortable because he was too fixated on the cause being pregnancy even though I made it clear I wasn’t sexually active, but he later gave me a diagnosis even before we got back the scan results. He told me I had fibroid and said I should come in the next week for surgery.”
The doctor did not offer any explanation on why that surgery was needed and seemed adamant about his diagnosis. She didn’t trust him enough to go back.
Medical misdiagnosis is a very common occurrence in Nigeria. In 2019, the Medical Council revealed that it was investigating 120 Nigerian doctors for different counts of professional misconduct, while half of that number are awaiting tribunal. Even though not all misdiagnoses lead to loss of lives or grievous injuries, some Nigerians still die of common ailments due to doctors’ mistakes in prescribing drugs and wrongful treatment including unnecessary surgery. This is a leading cause for why privileged Nigerians prefer to get treatment in more advanced countries.
A different doctor was recommended to Maimunah at a private hospital. She underwent scans but the doctor told her he found them unclear and could therefore still not tell what was wrong with her. It was shocking, then, that despite not knowing what was wrong, he went ahead to recommend her for surgery.
“The doctor gave me the diagnosis of endometrial polyp; he also recommended that I go in for surgery.”
Her family was sceptical, especially because the doctor had said the scans were unclear. It made them afraid of agreeing to surgery without a proper diagnosis, especially after hearing cases of people prescribed surgeries in private hospitals when they were not necessary. For these reasons, they decided it was best she went to a bigger hospital to get another diagnosis. These plans went South, however, when the COVID-19 pandemic came. She took the drugs he prescribed to her.
Research shows that about 61.69 per cent of Nigerians feel that medical practitioners tend to be careless about their conditions and 33.3 per cent believe that wrongful treatment by their doctors has caused them extra injury exceeding what took them to the hospital in the first place. But despite this huge number, there are very few reported cases of medical negligence in Nigeria due to poverty, illiteracy, reluctance to take it further as well as limitations in treatment options.
“Even though things got a bit better, my symptoms persisted, sometimes I will have like 17 days of period which will cease for a week or so before returning.”
Sometime after the blood transfusion, Maimunah started to get hives and swellings.
“It started from my throat, I thought I merely had a sore throat at first and got over-the-counter drugs for it. But it just kept getting worse; it affected my face and my entire body.”
To make matters worse, the bleeding, cramps, and weakness persisted. Maimunah was referred to the haematology department in the Federal Medical Center in Yola, Adamawa, North East Nigeria where she was based, but that didn’t yield much result.
“I am often dismissed and I never felt like they took my complaints seriously, especially when the results come out clean. They just kept giving me the same drugs that aren’t helping and ignored my complaints.” Maimunah had to seek help from a relative who was a medical student to get explanations on some test results because the doctors would not offer her any.
Medical gaslighting refers to instances where medical practitioners wrongfully dismiss the concerns of their patients by convincing them their complaints are unreal or ‘exist in their heads,’ not paying attention to the issues that the patients bring up, accusing patients of making things up, or writing off a patient’s symptoms without any explanation. Even though medical gaslighting is not always intentional, the impact is deep and sometimes irreversible– problems tend to worsen, deaths of patients can occur, or it can affect them psychologically, leading to increased self-doubt, anxiety, and sometimes depression.
Women are more likely to suffer from medical gaslighting than men due to wrong diagnosis; wide gaps in research especially in regards to issues specifically affecting women as well as gender stereotypes are big contributors to this problem.
Gender stereotypes such as the belief that women are dramatic, hysterical, and irrational make it easier for women’s issues to be dismissed. In 2016, the World Health Organization found that even though women in the European Union tend to live longer than men in the same region; women tend to spend more of their lives in poor health.
Studies also show that women are more likely to have their heart diseases attributed to mental health, less likely to receive emergency healthcare for stomach issues, and less likely to receive early cancer diagnosis or pain relief during obstetric care.
According to Dr Roger Fillingim, The Director of the Pain Research and Intervention Center of Excellence at the University of Florida, “Research also suggests that women are more sensitive to pain than men and are more likely to express it, so their pain is often seen as an overreaction rather than a reality.” He added that the possible explanation includes gender roles, hormones and genetics.
Adjusting To A New Reality
For Maimunah, this issue affected all aspects of her life. “Even though the law chamber I worked for was very understanding, I wasn’t paid a salary because it was an ‘earn as you go’ arrangement and since I wasn’t working, I couldn’t earn money.”
Maimunah’s father and brothers are quite understanding and try to help her as much as they can; they clean her vomit, run errands and rush her to the hospital when she needs to go and are very patient through it all, even when she gets irritable and snap due to her constant mood swings, she says.
“Despite their help, it was really hard going through it as they didn’t really understand and I felt really lonely because none of my close female relatives were alive to really understand what I am going through and when I tried to talk to others outside, they sometimes looked at me like I was a mad person or I am lying about how long my bleeding lasts.”
Some relatives have said she may be struggling with jinn possession or other spiritual problems and their advice is hardly ever helpful. Some Nigerians believe that physical or mental ailments, especially unidentified ones come from spiritual attacks and think that prayers and spiritual/religious leaders are more likely to help than hospitals.
Maimunah didn’t feel seen until a cousin connected her to a friend who suffered from something similar but unlike her, she had gotten a diagnosis for her problem.
When she first collapsed due to losing so much blood, her all-male family members couldn’t really explain what was happening to her and had to wait for her to do it even though she was slipping in and out of consciousness.
She was later referred to the gynaecology department in the same hospital. “I found a kind doctor who listened to and validated me. She asked me questions about my work and life and tried to better understand how my symptoms worked. This doctor also requested a scan.
“When I went for the scan, there were about four people in the room and when nothing showed up on the scan, they started shouting that I wasted their time. I was too weak to say anything back to them.”
The medicine combination she got from this doctor made things much easier for her.
Unfortunately, her bleeding started again in October and it was the longest bleeding period she had had. “It lasted for about 7 months. I started visiting other hospitals and talking to different specialists but my bleeding wasn’t stopping. “Maimunah managed to travel to Niger state for a close friend’s wedding and that was when she was referred to another doctor, who gave her a drug that slowed down the bleeding which she took for six months. But the drug caused a lot of bloating all over her body.
“I spoke to another woman who had a somehow similar issue to me and she confirmed that it was a side effect of the drug. But none of us were given any explanation on what it may do to our bodies.”
Part of the problems women tend to face in the medical system is the lack of explanation about how treatments or drugs can impact them, making it harder for them to make informed decisions. Many women tend to experience terrible pain during and after medical procedures like hysteroscopy, however not only are they not informed of the pain beforehand, they are also often dismissed when they complain about the unbearable pain.
Caroline, a 55-year-old woman who underwent hysteroscopy claims the worst part is the language used by the health providers, “The talking down- the standard script that tries to dupe women into having procedures. I felt completely worthless and on the verge of clinical depression, It was soul-destroying and still is.”
After going in and out of hospitals, Maimunah got tired of the endless trips and the lack of answers.
“I stopped going to the hospital, I started patronizing an Islamic chemist and the medicine has been helpful in some ways and a drug recommendation from a friend helped with the itching that I experienced.”
Islamic medicine which is also referred to as prophetic medicine are alternative treatment methods or drugs which originate from the practice of Muslims and the teaching of Muhammad, a prophet of Islam. However, this treatment option is believed to be strongly linked to faith and to require some measure of faith for it to work properly.
Research shows that about 85 per cent of Nigerians consult traditional medicine practitioners for psychological, physical, and social issues and this is largely because of dissatisfaction with conventional healthcare and poverty. Some of these traditional and Islamic medicines are registered and recognized by The National Agency for Food Drug Administration and Control (NAFDAC).
The use of alternative drugs is high among cancer patients and people living with chronic illnesses. Research conducted at the University of Nigeria Teaching Hospital shows that 65.0 per cent of cancer patients use alternative medicine and 31.1 per cent of children with chronic health conditions use alternative medicine in Lagos Teaching Hospital (LUTH).
They didn’t give her anything for the itching at the hospital even though she kept complaining about it. Maimunah has made some lifestyle changes such as avoiding triggers like heat, avoiding sugar and always wearing a pad when she is going out, etc.
But it didn’t make her problems completely disappear. “The hives caused me some skin issues and I decided to see a dermatologist, but he told me that this issue was blood-related and I needed to get rid of the source before my skin issues disappeared.”
Maimunah was happy when the swelling reduced greatly in September 2022 but the bleeding and cramps persisted. “Once, I had cramps for 16 hours, I went to the hospital by 6 a.m. but I didn’t see the doctor till around 10 a.m. They didn’t even take me seriously, however, they still did a scan but he told me even though he could see something, it wasn’t clear enough to tell what it was.” She left the hospital again with new sets of drugs and no answers, but even the ones that worked for a bit stopped working after a while.
“I had to leave legal practice because I can no longer handle any form of stress. I constantly have heart palpitations and when I feel strong emotions or overexert my body, I sometimes faint.” But thankfully, Maimunah got another job. “It’s not what I wanted for myself because I love legal practice but the work I do now gives me more time to rest and it’s a less stressful environment.”
Chronic illnesses tend to be invisible illnesses but their impacts are not. Due to the all-encompassing effects of these illnesses, people living through them tend to struggle with finding or keeping jobs which drastically impacts their lives. Many people are forced to leave what they like doing due to their inability to continue and for Nigerians living with chronic illness, there are little provisions such as disability checks to make their lives easier.
Maimunah is still terrified of surgery, mostly because of the unclear diagnosis. “I think I want to convince my Dad to let me get the surgery so they can remove whatever it is. I am tired of living this way and to make matters worse, when I struggle with walking or climbing the staircase, people will laugh and say it’s because I am fat or because I don’t exercise while ignoring what I am going through.”
People who have a lot of weight are usually stigmatized in society and unfortunately, this stigma also has an impact on employment, education, and healthcare. Living through such stigmas also makes people less likely to seek healthcare and make their symptoms easily dismissed by healthcare professionals. Fat shaming also increases the risk of depression, eating disorders, anxiety, exercise avoidance, and low self-esteem.
Maimunah hasn’t been to work for over a week and she tells people it’s malaria or a related issue because she learnt that people don’t always understand and end up saying cruel and insensitive things, making her struggle even harder.
“I constantly feel like I am slipping into depression especially after I quit legal practice.” Maimunah hopes that she gathers enough courage to see a psychiatrist as her experiences have greatly impacted her mental health as well.
“It hurts me when I look at my body with all the swellings and itching. I feel helpless when I bleed heavily and get painful cramps and sometimes I feel like I abuse drugs out of my desperation to heal and apart from that, I have to deal with people telling me I struggle with this because I am probably not eating healthy.”
Chronic illness can lead to a higher chance of developing substance abuse disorder and this can be caused by misusing medications especially opioids, being left to find solutions for their pains due to medical dismissal and gaslighting, struggling with the psychological toll of living with a chronic illness such as anxiety and helplessness.
Chronic illnesses do not just affect one’s ability to function normally but it can cause mood disorders such as depression and anxiety and can affect self-esteem due to changes to the body. This leads to constantly feeling out of control and increases feelings of loss and uncertainty due to the unpredictability of the illness.
Despite all the things that this sickness has taken from her, the 27-year-old still tries to live life as fully as she can. “I love writing and I still continue to do so. I also like dabbling in business but unfortunately, I can only do that when I am feeling a bit okay. I don’t like staying idle, but it has become my routine since I have very little energy.” But no matter how much she tries to not let her illness control her, it keeps slipping into her life in major ways.
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