Change Begins With Me

My name is Dorothy Nyika. I am the founder of the Dorothy Thyroid Wellness Awareness Trust. I am a social worker. I am an advocate. I am a woman living with Graves disease.

But before I had a name for what was happening in my body, I only had symptoms.
I remember being young and feeling hot all the time. Even in winter, I did not want heavy clothes. I loved being near water and swimming because my body always felt as if it was carrying too much heat. My hair was thin. My nails were brittle. My eyes became red, swollen, and teary. Sometimes people thought I was crying when I was not. Sometimes my hands shook, and people asked if I had been drinking. Sometimes I dropped things and was called clumsy.

At school, I had once been bright and active. I loved athletics. I ran, swam, and took pride in what my body could do. Then my body began changing in ways I could not explain. I became tired easily. I struggled to breathe. I had severe muscle cramps. My joints and knuckles became painful and swollen. My memory changed. I would study, but in class or during exams, I could not always remember what I thought I had mastered.

People had explanations, but not answers.
Some said I was lazy. Some said I was trying to avoid house chores. Some said I had changed because I was going to school and thought I was better than others. In my culture, as a girl, you are expected to balance many things. You must work hard at school and at home. But I was trying to survive inside a body no one understood.
That was one of the most painful parts: not having someone who could understand.

It took years of moving through the medical system before I was diagnosed. Doctors tested different parts of me: my heart, my kidneys, my eyes, my breathing. Graves disease can mimic other conditions, and because there was little awareness, the symptoms were scattered everywhere before they were gathered into one name.
By the time I received the diagnosis, I thought the name would bring healing. I thought, now that we know what it is, things will become simple.
But diagnosis was only the beginning.

At that time, there was not much information available. Some doctors themselves had to open books during consultations because they were not familiar with Graves disease. That left me uncomfortable and afraid. When surgery became necessary, I had many questions. Would I wake up? Was it safe? Did the doctors know enough? Eventually, my family supported me in going to South Africa for care. My family and husband were instrumental in my journey. Without them this would not have been possible.

There, I spent months in treatment and management. Doctors studied my condition. I learned from them, and they learned from me. After about eight months, I had a subtotal thyroidectomy.
I returned home thinking I would finally be allowed to heal. But society often sees recovery as proof that you can return immediately to what everyone expects from you. Now you are okay. Now you can go back to school. Now you can do your duties. Now you can be who you were before.
But I did not only need physical healing. I needed emotional healing too.
I had dropped out of college. My grades had suffered. My appearance had changed. My eyes looked different. My neck had changed. I lost friends. I lost confidence. I felt as if life had forced me to settle for what was available instead of what I had dreamed for myself.

People asked questions about my body as if my privacy no longer belonged to me. What happened to your neck? Why are your eyes like that? Are you serious? Did you try to harm yourself? Why has your body changed?
The questions made me angry. But over time, I also learned forgiveness. I began to understand that many people were speaking from ignorance, not cruelty. Still, ignorance can wound deeply.
I became tired of explaining myself again and again. So I began to write.

At first, I wrote small memories and short pieces about what I had been through. Then people encouraged me to write a book. I wanted to create something that could help another person understand Graves disease without having to suffer in silence the way I did. That book is now written and awaiting editing and publishing. I have also written newspaper articles and awareness materials so that others can learn, speak, and seek help earlier.
The more I shared my story, the more people began to come forward. Some told me they wished they had known earlier. Some believed they may have lost family members to thyroid disease that was never diagnosed. Some were living with symptoms they did not understand. Some were ashamed. Some were afraid.

That is why I speak.
Not because it is easy. Not because everyone supports it. Some people have asked why I talk openly about my condition. They ask whether I am not ashamed.
But what is shameful about surviving Graves disease?
What is shameful about telling the truth if that truth might save someone else?

If I had received support earlier, I believe some of my suffering could have been shortened. If there had been information, support groups, awareness campaigns, and doctors who recognized the symptoms, my journey might have been different. I do not want anyone else to walk the exact path I walked. I am alive, so I can tell the story. I can use my experience to help someone else find diagnosis, care, and courage sooner.

I studied social work because healing led me toward service. Serving others became part of my own recovery. Through counseling, community outreach, support groups, social research, and advocacy, I have learned that chronic illness affects much more than the body. It affects school, work, family, marriage, finances, identity, faith, and self-worth.

I have seen people drop out of school because their symptoms were not understood. I have seen people lose livelihoods because fatigue and medical costs became too heavy. I have seen families strained emotionally and financially. I have seen people told, “You look fine,” while inside they were fighting pain, fear, exhaustion, and uncertainty.

But I have also seen happiness return when someone receives the right information. I have seen people become empowered when they realize they are not alone. I have seen families grow stronger when they understand what their loved one is experiencing.
I am grateful for Rare Disorders Zimbabwe because they have created a platform where people can speak. Many people think support is only financial, but information itself is a form of support. When families have the right information, they can make informed decisions. They can find treatment. They can understand symptoms. They can stop blaming themselves. They can begin to hope.
My vision is for a Zimbabwe where awareness, advocacy, partnerships, empowerment, and inclusion guide how we care for each other. I want schools to support learners with chronic conditions so no one has to drop out because teachers do not understand. I want workplaces to understand invisible illness. I want hospitals to have visible information about thyroid disease the way they have information about HIV, diabetes, and other conditions people recognize.

To someone newly diagnosed with Graves disease, I would say this: diagnosis is not the end of life. It is the first step toward a better life. It is the beginning of understanding what your body needs.
Find a good doctor who can walk the path with you. Find support groups. Ask questions. Do not be ashamed. Your journey is your own. Two people can have the same condition and still have different experiences. Share what you know, but also listen to your body.
And remember that doctors learn from us too. They may have studied the disease, but we live with it. We know what we feel. We know what happens in our bodies. When we speak, we help medicine understand more.
I am still navigating challenges. Medication is expensive. Some treatments are not available in my country. There are still financial struggles and social expectations. There are still days when the emotional toll becomes heavy. But acceptance has helped me. Partnership has helped me. Advocacy has helped me. Speaking has helped me.

I am grateful for life.
I believe change begins with me.
And I believe that together, we can beat this, not by pretending chronic illness is easy, but by making sure no one has to walk the journey alone.


Poem associated with the narrative