Living with Scoliosis: My Journey as a Zambian Mother

June is Scoliosis Awareness Month; and today, on International Scoliosis Awareness Day; June 26, I am choosing to share a story that is deeply personal to me. A story not just about the condition itself, but also about love, sacrifice, resilience, and the urgent need for awareness in Zambia.

First, in case you may not know what Scoliosis is; let me try to explain it simply.

Scoliosis is a medical condition where the spine curves sideways, often in an "S" or "C" shape. While it can develop at any age, it most commonly appears in children and adolescents during growth spurts. The severity can vary from mild cases requiring monitoring, to cases that are more serious where one may need bracing or even surgery.

Scoliosis can affect posture, movement, breathing, and most importantly, confidence; especially in young children navigating their way through school and social life.

When my daughter was 2 year’s old she diagnosed with scoliosis, I entered a world I knew very little about; a world filled with medical jargon, tight appointment schedules, expensive procedures, and constant worry.

I was not prepared.

However, I learned quickly; because I had no choice. I had a daughter who needed me to advocate for her, to show up for her in spaces that were not always ready or kind.

The Hidden Costs of Scoliosis in Zambia

Unlike in countries where health insurance often covers scoliosis care, in Zambia, orthopedic care ( a medical specialty focused on the musculoskeletal system, encompassing bones, joints, ligaments, tendons, muscles, and nerves. It involves the diagnosis, treatment, and prevention of injuries and diseases related to this system. This includes both surgical and nonsurgical interventions); is rarely included in health insurance packages.

I have had to pay out of pocket for nearly everything including X-rays, specialist visits, follow-ups, and even the brace material itself.

A single lumbar X-ray cost about K700 (US$28) on average; and an X-Ray is required every six months to monitor the progression of the curve.

That is not even counting the consultation or review fees. Once it is established that a brace is needed, the financial demands rise even higher.

Bracing is a whole other affair. There are very few places in Zambia where you can access scoliosis bracing materials, and most; if not all; are not covered by health insurance.

The last two braces I had to get for my daughter recently cost K10, 000 (US$400) each, and I had to pay out of pocket both times.

What made it worse was; I had to justify this expense to my workplace to request a refund; something that felt invasive and emotionally exhausting.

I had to present medical records, referrals, and diagnostic reports; documents I did not necessarily want circulating in the office.

It was a cumbersome and emotionally draining process for something that should simply be treated as essential healthcare.

There were times I had to skip work to take my daughter for reviews or to search for specific brace materials, only to be met with unavailable equipment or inflated prices.

Some health care providers even tried to personally profit from my desperation; suggesting “faster” private routes at extra costs I could not afford. It was disheartening, and frankly, infuriating.

There is also the part that no one really talks about; what it costs you at work.

I have had to skip work multiple times, asking for permission multiple times; to attend medical reviews, X-rays, or search for bracing material.

But; I’ve also carried the unspoken pressure of needing to prove myself; to not be written off as "just a woman," and even more so, "just a single mother.”

And so I’d find myself working extra hours, staying late, pushing myself to deliver; just to prove that I could still do my job.

The silent stereotypes were always there. For example; certain tasks would be passed on to the more “capable” male colleague who was always physically present at work and, therefore, seen as more consistent… “more serious than I was”.

It was never said outright, but it lived in the unspoken conversations during meetings, the innuendos at office breakfasts, the subtle ways I was overlooked or doubted. It chipped away at me.

But I kept showing up. Because I am dependable. I am capable and I’ve learned that in many professional spaces, motherhood; especially single motherhood; is still seen as a liability, when really, it’s a badge of strength.

A Society That Stares, Not Supports

One of the hardest parts of this journey has been the stares.

When my daughter wears her brace in public, people stop and look. Some ask outright, "What’s wrong with her?" Others say nothing; but their eyes ask all the questions or show pity.

At her school, I have had to explain her condition repeatedly, only to be met with casual dismissals like, “She’ll grow out of it.”

Some teachers would comment on how sad it was to see her wearing that hard plastic brace; especially under the blazing African sun during hot seasons; and in their tone, I sometimes sensed judgment, as though I was being too harsh… as though I didn’t believe in her “growing out of it.”

At one point, I even had to show her X-ray to the supervising teacher; just to make them truly understand why consistency with bracing was non-negotiable.

It hurt me at first; but with time, I have come to understand that most of it stems from a lack of knowledge. Scoliosis is not widely understood in Zambia, especially in children. And unless you’ve lived through it; watched your child struggle to move, or tried to keep them comfortable in heat while wearing rigid plastic; it’s easy to make assumptions.

Scoliosis is not just a physical condition. It is an emotional one ; especially for children. Imagine having to wear something rigid and uncomfortable every day, all while trying to fit in, be normal, and feel beautiful.

I have seen my daughter carry herself bravely through this journey. At times, I think she is stronger than I am. Where I may be crying quietly on her behalf, overwhelmed by worry or frustration, she is smiling; always smiling.

The first time she had to wear the brace she toppled and fell from the weight of the brace and I had to help her up, I was crying silently; internally but she just smiled at me.

She is a happy soul. Her joy, her strength, and her light have been my anchor in the storm.

This humbles me every day. Every single day.

The Emotional and Financial Toll

Being a single parent has made this journey all the more intense. I carry it all; the emotional weight, the financial burden, the appointments, the research, the advocacy.

Some nights, I lie awake thinking about her future.

Will she be in pain, as she grows older?

What about when she becomes a teenager, how easy will it be to live in a society that expects you to be perfect; that rushes to make memes out of someone’s situation?

What about her love life?

Will she find a partner that will love her for who she is?

Will she have children without complications if she decides to?

Will I still be alive to support her through it all?

Will she ever get the surgery she might need?

The current price for surgery alone is K,200,000 ;(US $8000) and this is not covered on insurance, one would have to slave and save for it whilst juggling the other health demands.

I have cried in bathrooms, fought battles in boardrooms for time off, and pushed through exhaustion to show up for her. I have no regrets, but it has not been easy.

Finding Connection in Unexpected Places

In my desperate search for scoliosis support in Zambia, I came across the Matimba Spinal Surgery Foundation of Zambia; a small online page created by a father who, like me, was navigating this journey with his child.

Major funding does not back the foundation, nor does it have a big team or extensive programs; but it exists.

Because a father decided, he needed to do this.

And sometimes, knowing that someone else in this country understands what you’re going through is a comfort in itself.

It reminded me that there are parents out there trying to raise awareness, trying to build something meaningful despite having very little. I wish we had more platforms like this; more organized support, more awareness, and more resources for families like ours.

A Call for Change

Scoliosis does not just affect the spine; it affects the spirit, the family, the finances, and the future. As we mark International Scoliosis Awareness Day on June 26, I hope my story sheds light on what families like mine go through.

I hope it reaches someone who feels alone in this journey.

I hope it reaches policymakers and insurance companies who need to do better.

And most of all, I hope it creates space for kindness; because every child in a brace, every parent behind the scenes, deserves more than stares. They deserve understanding, support, and care that does not come with impossible price tags.