Expository! Overcoming Stigmatisation, Bullying & Depression: Scorned Nigerian Women & Mums Battling Alopecia Tell Their Motivational Journey To Self-love & Acceptance

Alopecia is a common autoimmune disorder that causes unpredictable hair loss in different parts of the head. Online sources note that some symptoms of alopecia include grey and white hair where there is hair loss, hair re-grows where it fell off and hair grows in a bald spot and starts falling in another area.

I was born with full, long hair,” said Tolulope Ogunmodede, a Nigerian battling alopecia as she caressed her hairless scalp.

Ogunmodede, like every other healthy child, was born with hair on her head. She prided herself in her long full hair during her formative years. According to her, her once-upon-a-time lush hair suddenly became a nightmare sometime in 2004 while in a higher institution.

No one had an idea what caused the sudden hair loss, especially as it began to shed off from different head patches.

Perhaps it was ringworm or side effects of some harmful products, her hairdresser had suggested to her. As it is a common practice among some ladies, she applied several things and medication on her hair. The troubled lady tried everything suggested to recover her once cherished hair. Ogunmodede said,

“I was not born with alopecia. I had healthy, lush hair as a child even till my early years as an adult. However, things changed sometime in 2004 while in my first year on campus. I went to the salon and my hairdresser called my attention to the patches on her head.

“I discovered a bald part on one side of my head when I went to make my hair. When the stylist called my attention to it, I thought it was a minor thing. But by the time I visited the saloon again, I noticed another bald part.

It was then I knew trouble was looming. I went home and showed my mum. She ignorantly also assumed it was a minor thing. She said perhaps it was a ringworm. My mum and I started sessions of self-medication, applying whatever could cure ringworm.”

Ogunmodede soon became ashamed of the hair loss because going to the salon like every other lady stopped being an option for her. She thus resorted to plaiting her hair by herself at home.

But the option didn’t last for long as she became tired with the hair herself and had to shave it for, hoping it would grow back. She added,

“I couldn’t go to the salon anymore and I started making my hair myself. At a point, I could not braid my hair anymore, so I shaved it, believing it will grow back. But it did not.

The balding started like the size of a coin, then it continued progressing and the balding patches were linking up. What was left didn’t make any sense and I had to shave the hair completely.”

From full hair to bald head

Mrs Ogochukwu Adesina, like Ogunmodede and others battling alopecia, grew up having full, luxuriant hair. She said,

“I had nice hair. I never had any issues with my hair; it was long and black and soft. It was absolutely beautiful and I miss it sometimes.”

Modupe Akindele is not left out of those who had beautiful hair as a child until she also began to lose it. Hers even came earlier as she noticed the first patch while she was 10 before other things started happening. She stated,

“As a child, I had healthy hair up until I got to secondary school at age 10. There was no symptom. It just suddenly started with a little patch that seemed like some hair was clipped off after I loosened the braids I had on that year.”

It is the same story for Upe Otaru and Moshoodat Adedeji who are also suffering from alopecia. According to them, it wasn’t something easy to be used to full hair and suddenly became bald. The situation is disturbing as it defies any solution at the moment.

Otaru noted that as a child, she had full hair to the extent that she didn’t experience the regular hair breakage during combing. She stated,

“I had no issue combing my hair and even stretching it because it was full and thick until I started to relax my hair. It was long because I could pack whatever style I desired. I would keep folding it whenever I was nervous; it was that long until I had the first patch in my hair.

“I noticed mine started with a sensation in my scalp like something crawling from under my skin and it would hurt. After a while, I noticed that the hair fell off whenever I combed it until I had a patch in my scalp. Those were the things I experienced alongside excessive hair loss.”

Adedeji (pictured above) also never believed that anything could have gone wrong with her hair until she was 21 and experienced patches on her hair. She said,

“From my childhood, I had full hair till 2015 when I was 21 before hair loss started. The first symptom I saw was a small round bald patch. I was at the saloon to wash my hair when my hairdresser noticed. Apart from that, I was physically okay. Afterward, I got more bald patches a few months after.”

Difficulty in diagnosis

Ogunmodede thought she was lucky enough to meet a doctor who could diagnose her condition. Not knowing it was the beginning of her challenges. She stated,

“Sometime in 2008, I met a dermatologist who diagnosed me with alopecia. That was in 2008. He told me that though autoimmune disease does not have a cure, my hair had a 50-50 chance of growing back.”

She said that was how the journey of growing back her hair started.

“The dermatologist told me that although it didn’t have a cure, there was a 50-50 chance for my hair to grow back. He afterward placed me on a medication that cost N15,000 per can. It’s to be taken fortnightly.

Between 2008 and 2011, I used the medication but there was no improvement. Instead, I lost my eyebrows and eyelashes. At this point, everybody became more worried. But before the end of 2011, my lashes grew back but not completely.”

Ogunmodede soon became worried like everyone around her. However, she met another dermatologist who also experimented with her situation whereas she was desperate for help. She added,

“I met another dermatologist who assured me that he could grow back my hair and that was what I wanted to hear. He started using all sorts of things to wash my hair, including a popular disinfectant. These caused me severe pain. Worse still, the dermatologist also placed me on wrong medications.

The drugs started affecting me mentally. I started having mood swings. I told my parents that I would not take the medication again and not visit the dermatologist anymore. That was the end of my experience with the second dermatologist. Nothing happened, no progress on my hair at all.’’

Adesina also had her struggles trying to figure out what the issue was as soon as she discovered some round patches on the side of her hair sometime in April, 2005.

She had no idea that the situation would make her lose her hair eventually. According to her, the main struggle with alopecia started while she was in the university.

“Battling with a disease that people weren’t familiar with was quite tough on its own,” she added.

She didn’t know what the problem was, neither were the people around her. Thus, it was the case of battling unknown diseases for some time. Adesina said,

“The only symptom I noticed was a small, round patch at the lower right side of my head. It was clean, almost as if someone shaved the part it with a blade. Apart from that, there wasn’t any other symptom I noticed.

“I saw the first patch in April 2005 and it was many years after, perhaps seven or eight years later and after many hospital visits before I got to know that it’s alopecia.”

For Akindele, she ran everywhere for help until a doctor diagnosed her with alopecia. She said,

“After several visits to different hospitals, I finally met with an American-trained doctor who discovered the disease to be alopecia. That was in 1992.’’

The case of Adedeji is however different. She noted that it took her seven months to know what the disease was. She added,

“The first diagnosis identified fungi infection. It took seven months before I was referred to the LUTH’s dermatology centre where it was properly diagnosed as alopecia areata.’’

Only Otaru appeared to have an idea of what she was experiencing. In 2009, she went for a consultation and got a medical confirmation.

“In 2008, I was diagnosed with alopecia and after that, I cut my hair. Then in 2009, I went to the hospital with my bald hair for another diagnosis, and I was told that I had scarring alopecia.”

According to WebMd, scarring alopecia, also known as cicatricial alopecia, refers to a collection of hair loss disorders that may be diagnosed in up to three per cent of hair loss patients.

Attendant stigmatisation, depression and other challenges

Ogunmodede, who has been battling the condition of 11 years, described the experience as traumatic. She added,

“You don’t want to know the pain that comes with trying to figure out what the problem is. When you can identify the problem, it is a bit easy but spending 11 years of your life trying to unravel what exactly was wrong with you. The stigmatisation that came with the condition even made it worse.”

Some people link hair loss in women to witchcraft or evil. She said living with the condition strained her relationship with people as some mock her. She said,

“When I was in school, there were people who mocked me. Even till now, people still do it. But back then, it was awful. Some people called me an alien. They discussed me everywhere I went. I started using a scarf to cover my hair, but some people sometimes moved to my back to remove it.

“Psychologically, it affected my education because my final year was a struggle. Finishing without a bad grade or extra year was a miracle.”

Ogunmodede, a graduate of Production and Operation Management from the Kaduna State Polytechnic, said it was a personal battle for her while in school. She stated that it was worse during her post-graduate programme in Management Information System at the Kaduna State University. She added,

“It was battle. I was the only one who knew I was fighting a battle. I was suicidal between 2008 and 2009. I know my mother will never forget that day. It was that bad. Now, we don’t use an electric boiling ring in my family because that was what I used.

If my mother hadn’t been at home, it would have been a different story. I could remember that water was boiling and I grabbed the boiling ring. That is all I could remember.

The issue is, I was placed on the wrong medication by the second dermatologist that treated me, and the drugs affected me mentally. The side effects affected my mental health and memory badly.”

Adesina, a mother of two, told PUNCH that it was quite challenging for her, especially during her tertiary education. She stated that she didn’t have peace until she came to a place of accepting who she is. She stated,

“When I was told of the condition, I read about the condition. I discovered it had a name contrary to what I thought. There were many people living with the condition. I also discovered that there were several other types of alopecia.

“I recall when I was in university. I was laughed at and mocked a few times when I uncovered my head. It was tough hiding behind wigs, scarves, and others to cover my head and hide the condition.’’

Akindele said her immediate family knew it was a medical condition, but they didn’t know how to go about it despite recommendations from family members and friends. She said,

“It was apparent that this was a medical condition. My family just didn’t know the right channel to turn to as I got bombarded with various antibiotics and antifungal cream by different doctors to no success.”

“I kept on asking why me. It made my childhood days devoid of certain exciting adventures. Like visiting the pool and going for holidays at people’s houses.”

Akindele said her childhood was full of bullying and stigmatisation. She added,

“I was called several names in school and bullied. I went to a secondary school that had a beret as part of the uniform. However, it was apparent I had no hair even under the covering. One day, a boy yanked the beret off my head and tossed it to his friends. It was passed from hand to hand. I felt the ground would open and swallow me that day.’’

On her part, Otaru said she was depressed, anxious and wondered when her hair would re-grow when she found out about the condition. She said,

“After waiting tirelessly, I decided to shave it. After cutting off my hair, I slipped into depression and had low self-esteem. Family members didn’t stigmatise me, but I was stigmatised by outsiders.’’

Otaru, a mother, said,

“But I didn’t let people make jest of me. Before I cut my hair, I had a huge patch at the centre of my hair. Because I have thick hair, I would pack it up so that it doesn’t show that I had patches in my hair. I kept packing my hair up till I was sure I was ready to go bald. I started to research about it.’’

Adedeji said when the hair loss started, she felt really low, adding,

“I was stigmatised. You know people get scared of what they don’t understand. I was scared. I didn’t believe I could survive it. But right now, I’m grateful and hopeful. I am enjoying life to the fullest without hair.’’

The spiritual link

Akindele said some people felt she could have been afflicted with the condition at the beauty shop. She said,

“There were suggestions by some family friends that it was the saloon I visited that got me afflicted with the disease. But it was strange that no form of illness came with the hair loss; neither was there any form of rash with it. We had enough prayer sessions.”

On her part, Otaru said she or her family members didn’t see it as an attack. She added that they however, believed that there was always a spiritual perspective to every aspect of life.

“For me, we didn’t have the fear that someone wanted to harm me; we were praying about my health because it was a scary condition back then,”

she stated.

Adedeji had a slightly different opinion as her mother especially didn’t rule out the spiritual aspect, wondering how one could explain sudden hair loss medically.

Relationship with men

Ogunmodede said that living with alopecia had affected her relationship with the opposite sex. In her words,

“Sometime in 2011, I was engaged and was planning my wedding. I saw my would-be mother-in-law then as my mother. My fiancé’s mom cancelled our introduction

“I decided to open up to her, though her son knew about it. I revealed to her during a chat that I did not have hair and my experiences with dermatologists. She requested to see my mother and they both talked. My mother told her about my hair when I was growing up and how the whole thing happened. She told me that the discussion should be between her, my mother and me.

“But I was shocked when one of my fiancé’s siblings requested to go to the saloon with me because I have a unique way of making my hair. Three days to our wedding introduction, my fiancé’s mother called off the wedding for fear of the unknown, stating that the family didn’t want grandchildren that won’t have hair.
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The whole thing threw me off balance for a long time. But thank God I am fine. It did not affect my career. I have my own business and I am doing well.”

Adesina said the condition affected her relationship with men but thankfully, she had a male friend, who stood by her through the years,

Adesina, who is one of the few lucky ones with men who accepted them, said the man who is now her husband, had always been aware of her condition.

“Well, as I said, I was covering up for a long time, but my husband knew about it long before we even started dating as we were excellent friends at the time. I’ve been blessed with a partner that is understanding and has been supportive from the first day,’’

she said.

Otaru said alopecia never affected her relationship with men as they didn’t talk about it. She said,

“One of the men liked me because of my bald hair. When the hair started to re-grow, he said he didn’t like my hair growing. The most important thing is that we victims of alopecia that must love ourselves first before our relationships with men.

Someone might like you, but your self-esteem issues and all might destroy the relationship. You might be so focused on your demon that you didn’t see the good that the person was doing to love you. You must love yourself first.”

For Adedeji, she said she had met some men in different categories from the good, the bad and the ugly. She said,

“The condition affected my relationship with men, especially as they see me differently now, and I get questions I wouldn’t usually get when I had hair. Men want to know if it’s hereditary or contagious. But I do not let it get to me. I have dated amazing and supportive people.”

Finding love among others

Ogunmodede, who is the founder of the Heroic Alopecian Foundation, shared how she overcame the challenges. She said,

“In 2015, I pulled myself together. I decided not see any pastor; I decided to deal with it. I went online to read about it. I read about people with alopecia. I overcame alopecia in 2015 because I became more aware. I read about people with alopecia, what they had been through, even though they are not from Nigeria. That was where I got my peace because I realised I was not alone.

“I told my mother that I will start opening my head and that I wanted to create awareness about it. I also established the Heroic Alopecia Foundation, which I have been using to raise awareness about the condition.

“We are over 50 peeople. The more we raise awareness, the more alpecians wants ti identify with us. We stand for each other, we sensitise people and also stand by each other. Once a person is having an issue, we rally round to support the person. We keep expanding by the day.’’

Adesina said she found out that she could conquer stigmatisation and other things associated with alopecia. She stated,

“Self-love and acknowledging the uniqueness of my journey. I also realised that people fear what they don’t understand and that fear can be projected differently. It could be through snide remarks, keeping their distance or not being accepting.’’

Adesina said having gone through a lot herself; she discovered that she could be a shoulder to many suffering from the condition. She added,

“It can be challenging mainly because hair is seen as an aspect of a woman’s feminity, which should be enhanced; therefore, it is still taboo for a woman to be bald in many societies. But who defined this standard, and why should women be ashamed or bound by them?

“I stopped covering up about two years ago, and I no longer wear wigs or cover up out of fear or shame. I have embraced my body and flaws. I love myself fiercely because I deserve that love, and so does everyone else.

“If you know someone who’s living with Alopecia or anything that defies the world’s standard of beauty, please be kind. Kindness goes a long long way.”

Akindele said the awareness level on the condition was still low in Nigeria.

According to Otaru, knowing that she wasn’t the only one with the condition helped her to move on quickly and become a voice to others battling the same battle. She said,

“I saw different people that talked about it. It informed my decision that it’s only a fashion statement and nothing serious. The day I wanted to cut my hair, I had the community around me, they were there to support me and made me feel beautiful.

“Being part of the community, you’d meet the joyful ones, the sad ones and you’d learn from everyone.’’

Adedeji said she was able to move on when she learnt to love herself and join a community of alopecia. She said,

“I moved on by learning to love myself and educating everyone I know about what alopecia is. When I became bald in 2016. I lost hair everywhere. I just had to motivate myself and love the new me. It was easy for people to accept me when I had accepted myself.’’

Alopecia victims should consult a skilled dermatologist — Expert

On his part, a dermatologist, Dr Sebastian Oiwoh, said alopecia simply means hair loss. He said,

“In simple terms, alopecia means hair loss which can result from production decline, early or accelerated shedding of produced hair shafts, presence of non-functional or dead follicles; holes where each hair shaft comes from.”

He said that alopecia was caused by various things depending on the type. He added,

“There are varied causes. Based on the specific cause, alopecia can be androgenetic alopecia (also called common baldness or pattern alopecia), autoimmune causes of alopecia, that is, body fighting self in the case of alopecia areata, inflammatory causes; frontal fibrosing alopecia, central centrifugal cicatricial alopecia, pressure/ traction etc.

“Based on how they appear when the area of hair loss is examined with a dermoscope, alopecia can be divided into scarring or non-scarring alopecia. Scarring alopecia means the hair follicular; opening tiny holes from where each hair comes out from is close and can’t produce hair while non-scarring alopecia means although there is still hair loss hope of hair growing again because the follicles are still patent.

Oiwoh said examples of scarring could be from discoid lupus erythematosus, lichen planopilaris, dissecting folliculitis, folliculitis decalvans, while instances of non-scarring were pattern baldness, alopecia areata, traction alopecia (although in the later stage can be scarring), trichotillomania (compulsive feeling of pulling hair out of the follicles), telogen effluvium (which can follow stress, illness, etc.), and hair loss following anticancer drugs use.

The dermatologist added,

“The causes vary depending on if it is pattern alopecia (which in most cases is commoner in the elderly people although younger age group have also been found to have such), traction alopecia, frontal fibrosing alopecia and psychological (trichotillomania). It can also result specifically from hair shaft related disorders that make the hair break without getting long enough.

“The treatment of alopecia also depends on the cause of hair loss. The symptoms can range from itching, scales, plenty of hair strands being lost on combing the hair every morning, thinning hair till it eventually becomes lost, etc.

“Treatment of hair loss generally depends on the cause as it is not one shoe-fits-all kind of treatment. This means whoever has such symptoms should see a dermatologist trained to ask relevant questions, examine appropriately, run some tests where necessary to ascertain the specific cause. Then treatment commences as the cause dictates. And in all, with an initial presentation in many cases, the varied causes can be managed successfully.”

Oiwoh advised that alopecia victims should be treated like every other average human as the condition wasn’t transferable from person to person. He stated,

“Alopecia in itself is not communicable. There has been a hereditary link to common baldness otherwise called androgenetic alopecia.”

The medical practitioner advised that victims should visit certified dermatologist to avoid the trauma of wrong diagnosis.