When his heart started racing and the weight started falling off, people told him he was “just stressed”.

Diagnosed with Graves’ disease in early 2024, Thembalethu John Kumatana from Kraaifontein in Cape Town has turned two years of living with the autoimmune condition into a guide for others.

His book, Living with Graves Disease: A South African Perspective, published this year, grew out of the journaling he started just to make sense of it all.

Born in Elliot in the Eastern Cape in 1982, the author wanted to share his journey with others in the hope of strengthening them.

“I have come to learn that you do not write for applause. You write because you must, because your story might be the one that helps someone else feel less alone,” he tells TygerBurger.

Awareness needed

Graves’ is an autoimmune disease in which the immune system attacks the thyroid gland, causing it to produce too much thyroid hormone.

The result, he says, is that the whole body goes into overdrive, racing heart, unexplained weight loss, insomnia, trembling hands and mood swings.

“The hardest part was hearing ‘but you look fine’,” he says. “Because not every day is the same. Some days I had energy. Other days I could barely get out of bed from fatigue and muscle weakness.”

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Thembalethu says thyroid disease is under-discussed in South Africa, where getting a diagnosis, understanding medication like Carbimazole and Methimazole, managing frequent blood tests and covering the costs is “a journey”.

He also tackles three myths head-on, that patients caused the disease themselves, that a pill cures it, and that it only affects the thyroid.

Graves’ can also impact the eyes, skin and heart, and remission can be followed by relapse.

Why the book

“I’m not a doctor. I’m a Graves warrior,” he says. “And our job is to educate and share.”

He says he wrote the book so the next person diagnosed doesn’t feel alone, so families understand what is happening, and to build awareness and survival strategies together.

His advice to others is to ask questions at every doctor’s visit, find a community, track symptoms and advocate for yourself in the healthcare system.

“If you’re reading this and you’ve just been diagnosed, please know: it gets better. It’s a journey, a process.”

Writing a book is an experience that is difficult to put into words, says Thembalethu who has authored several other books on topics such as the importance of fatherhood and a counselling guide.

“It begins as a thought, a whisper in your heart that refuses to leave you. A story that needs to be told.

There is a deep excitement that comes with it, the moment when the first words finally find their way onto the page. Your heart beats faster. You feel a sense of purpose, a feeling that your voice will finally be heard. Seeing your name on the cover for the first time is an overwhelming moment, a mixture of tears, joy and disbelief. It is the moment you realize, I really did it,” he says.

“But behind that excitement is also hard work and vulnerability. “We do not write for ourselves. We write for people to understand.

“Everyone is going through something. So our role is to communicate, to educate, to inspire, and I have chosen to do that through writing. I do not know any other way of fighting my battles, but when I get a pen and paper, I transfer my feelings and it makes a lot of sense to me. It leaves me lightened.

“It relieves the stress, it relieves the anxiety. Writing for me is therapeutic. That is how I have found peace, between those pieces of paper.”

For more information about the book contact the author on 071 880 2717.