Carol Makandi Nkinda recounts her journey of hair-loss, denial, stigma and finally embracing baldness.

Proverbially, a woman can skip a meal to have her hair done. There are women who believe that well-kempt hair accounts for 95 per cent of their beauty. But imagine waking up one morning and finding that all your hair has fallen off; worse still, your doctor tells you that there is no hope of regrowth. This Alopecia Awareness Month, Carol Makandi Nkinda recounts her journey of hair-loss, denial, stigma and finally embracing baldness.

You wouldn’t know the real value of your hair until disease robs it from you. I loved my long flowing hair; I would play with it and come up with all manner of styles. I became a hair stylist long before I even knew there was such a profession; no wonder I still style people’s hair during my free time regardless of my bald head. My father loved my hair too, he always complimented its curly waves and when in 2015, I decided to put my hair in dreadlocks, he was very disappointed.

“Why! You have spoilt your long, beautiful hair!” he exclaimed the first time he saw the dreads on me. He did not know it, but I would still play with the locs and come up with different lovely styles. But all those are now just nostalgic memories; alopecia crept into my body and robbed me of all my hair! Alopecia, also known as spot baldness, is a condition in which hair is lost from some or all areas of the body.

I was always sickly, even when I was growing up in Kaaga village of Meru County 44 years ago. I am the second born child among five siblings who are all healthy and have been extraordinarily supportive with my ailing health. With me, if it wasn’t tonsillitis today, it was bronchitis; tomorrow it would be an allergy of some sort hence my body was quite familiar with illness.

As a baby, I also developed eczema; a condition that causes the skin to become itchy-red, dry and cracked which I have managed to this day. With that history, I thought it would be easy for me to absorb the news when I was diagnosed with autoimmune disease two years ago. Since I have managed different illnesses all my life, and none of them has brought me down, I was confident that this too, was a mountain I could climb easily.

Autoimmune disease is a condition which develops when your immune system, which defends your body against disease, decides your healthy cells are foreign and gets rid of them. How wrong I had been that this would be a downhill task! This condition brought along alopecia and unfolded the mystery as to why my hair had started “disappearing.”

My journey with alopecia started gradually and would have gone unnoticed if my sister hadn’t noticed a lump and a patch of hairlessness at the back of my dreadlocked head. Earlier, I had developed skin-ulcers around my waistline and a doctor had advised that I was getting allergic to the elastic-band of my pants. The ulcers were bursting out into painful sores and the doctor had prescribed ointment which seemed not to be helping. In desperation, I had opted to stop putting on underwear but was soon uncomfortable and devised strapped pants that had no elastic-band. When my sister saw the swelling and the hairless patch, I related it with the sores around my waistline and my fingernails which were also getting weaker by the day. I became panicky and anxious; theories ran through my mind of what the relationship of the three symptoms would bear.

Two weeks later would find me at the dermatologist’s clinic after my sister’s discovery on my head. My hair was falling off but I didn’t see any strands falling. Had the hairless patch not been growing bigger by the day, I would have thought that I was imagining things. However, to my dismay, I would later learn that the hair was thinning and shrinking off and if any fell off, it would have been unnoticeable.

Within the next two days, another patch had formed and by the third day, I had three big hairless patches and could barely recognise myself. I was downcast at the mere thought of my locs all falling out. I had never heard about alopecia before neither had my dermatologist treated such a case. This left me puzzled and frightened because as it were, the condition was strange to both doctor and patient. Today, I know the weight of ignorance and that is why I have made myself an alopecia champion, to educate people on what the illness entails.

After the visit to the dermatologist, I went home feeling empty and defeated. I didn’t know what to make of the hair loss. I was embarrassed and could not dare to look at myself in the mirror. When I did, I found that the reflection wasn’t me at all. I felt like I was no longer beautiful even though my face and every other visible feature were intact. I was thrown into a spell of denial where I tried all manner of wigs to replace my once beautiful hair. My hairstylists would also come up with different-styled wigs and put them on me but nothing could ever compare to my original hair. After much persuasion from my siblings, and friends, I sought a second opinion from a specialist who ordered for a biopsy.

The tissue examination confirmed that I had autoimmune disease and alopecia was active in me!  This would lead to many hospital visits and admissions but the verdict had been clear: regrowth of the hair was not guaranteed. I felt defeated; the steroid treatment I was getting while at the hospital also blew up my weight and I became abnormally overweight. My colleagues at the manufacturing company where I work could only look at me sympathetically or whisper questions to each other. I felt stigmatised and different, though my family and friends were always there to support me.

To date, my father calls every day to find out my progress and to ask if there are any new developments. Not many people would understand that this was happening to me as a result of sickness. I can’t blame them though because I also had not heard about this hair loss condition and it is evident that the condition isn’t common in many African communities. I blamed the number of times I had used chemicals on my hair, I blamed my dreadlocks and practically looked for anything I could blame as I tried to wrestle down denial.

The drama with my head wasn’t over yet. There are times I would feel like insects are creeping within my scalp. The first time I had this feeling, I went crazily to my new doctor but they told me that this is not a known symptom of alopecia. Up to now, I have no idea what creeps in my scalp but I do know it’s pretty itchy and causes a lot of discomfort. It amazes me why the society tends to brand and whisper when they don’t understand someone’s health condition. The fact that I finally decided to shave off the remaining hair and was bold enough to go about my business with a bald head brought a lot of stigma on me.

Those who wanted to christen my condition cancer, did, those who thought I was shaving my hair to look younger also said so. Now that I have overcome denial, I educate people today no one goes to the supermarket, picks a shopping basket and puts disease in there. Sickness doesn’t need your permission to enter your body. I remember a time someone had sent me a parcel and left it at some reception. When I got there, the receptionist gave it to me without even asking for my name. “Wow, how did you know it was mine?” I innocently asked.  “She said the lady with a bald head!” That answer reverberated in my ears for many days as I considered what people said behind my back. 

That made gave me the strength to educate people the more that this is not just a beautification strategy but a medical condition that has cost me not only lots of money but also pain and distress. Recently, my daughter asked me if alopecia is hereditary. I saw the genuinely innocent worry in her eyes and had to act fast. “Yes darling!” I said confidently “and if that happens to you, you have already learnt a lot from momma, haven’t you?” How I phrased these words was magical because I could see the understanding smile on her face.

After many weeks of desperation and frustration trying to understand why my hair would just peel off, I decided to start studying about alopecia so I could get to educate other people. I searched online and asked doctors questions about alopecia and started a blog about it. Before I knew it, I had made lots of followers and most amazingly, an online support group was born. Today, I have a great support group with over 1000 local and international members where we talk and joke about our experience with alopecia. Strangely, some members of my support group feel the “creeping insects” in their scalps too!

Some of us think it may be a sign of regrowth while others think it could be a sign that even the remaining hair will be taken away. That, I must say, is the power of a support group. I have been able to interact with different people managing alopecia from across the globe and we always discuss new developments at individual levels.

I have no tears any more, but humanly speaking, when I start styling someone else’s hair, I can’t help but ask God why he chose my head out of the billions of women in the world, to have alopecia.