LIVING WITH LEPROSY IN A COUNTRY WHERE IT’S LONG BEEN FORGOTTEN – EVELYNE’S STORY

 

Blog - Evelyne Leandro
Evelyne Leandro was diagnosed with leprosy when she was living in Berlin, Germany.  Photo: Tom Bradley

Born and educated in Brazil, Evelyne Leandro moved to Germany to start a new life. She learned a new language, secured an exciting new job and made new friends. Then some patches appeared on her leg. Many examinations later, she was finally diagnosed in 2012. It was leprosy.

Read on to find out more about Evelyne’s journey in an interview with Katharine Jones.

Q. You were young, educated, with a new job, a new language, a new life ahead of you and then you were diagnosed with leprosy. How did that make you feel?

Even as an informed person, my first thought was that I was being punished for something I’d done wrong. It was the age-old image we have of the disease that concerned me. Of course, I hadn’t done anything wrong to deserve this, but I was already desperate. The idea of giving up everything I had conquered at that time was very painful. Starting a new life isn’t easy. In another country even worse. And ill? I had an idea what kind of future I would have and that was very scary.

Q. What did you family back home in Brazil think and how did that make you feel?

My family in Brazil, especially my mother, was very supportive. But the distance and the feeling of impotence were there, and I had to deal with my mother’s feelings too. She wanted to help, but didn’t know exactly how. She was in Brazil, I was in Germany. Bringing her to Berlin would be an additional issue for me, because I wanted this experience for her to be special. And I would need to be brave for both of us. I wasn’t strong enough for that. However our exchange during the whole process was very important for me. I could tell her my fears and she would listen to me.

Q. What was your husband’s reaction to your diagnosis and how did that make you feel?

At the first moment, he was as desperate as me because it was difficult to understand how this diagnosis could be possible, and what the next months or years would be like. But I believe, my husband was one of the pillars of my healing process. He supported me a lot and ensured me every day that I was loved no matter how I felt or looked like. That gave me a feeling of belonging. At least, I wasn’t alone.

Q. What was your employer’s reaction to your leprosy diagnosis?

My employer didn’t know about my diagnosis until I published my book. And at that moment, I wasn’t an employee anymore.

Q. Can you explain why the leprosy reactions upset you so much?

The many ups and downs during a long-term treatment are the most difficult part of it. One doesn’t ever have peace. When I needed time to concentrate on my healing I was surprised with a leprosy reaction. That meant a break on the treatment, more steroids and pain. With the pain and the other issues that a reaction brings, it’s difficult to focus on the most important thing: mental health.

Q. What was the one thing that upset you the most?

Not only were the reactions difficult for me. The side effects of the disease were the worse! It caused many other problems, such as depression, suicidal thoughts and weakness. I had to fight against the disease and the side-effects. It was a huge effort to maintain my sanity. A lot of therapy, and writing helped me with that.

Q. What was the worst moment and how did that make you feel?

The worst moment was, for me, was when the treatment ended and a couple of weeks later my body was reacting without the medicines. I thought, I had to start all over again and that would be the end for me. I couldn’t imagine going through all that again. I was feeling crazy until I went into therapy again, and with the support of my husband and doctor, I mastered the situation.

Q. What was the best moment and how did that make you feel?

The best moment was one year after the end of my treatment, sitting in a café in Berlin, I began to think of all the things I had lived, learned and overcome until that day. It was a relief. It was a magical moment for me. I was feeling free. I was proud of me. I made it!

To read more about Evelyne’s epic journey and how she conquered leprosy, please find her book here.

 

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