Bulgaria: Living With Hepatitis C

I discovered this blog [bg] by chance. The title read, “Hepatitis-Minded: Thoughts of a Contaminated,” and it was moving to get that close to someone's everyday fight with Hepatitis C, this awful and insidious illness. The words were simple yet sharp and touching [bg]:

Аз съм момичето, което чака с теб автобуса на спирката. Което сяда на втората седалка и зяпа разсеяно през прозореца. Аз съм тази, която се смее високо на съседната маса, която ти се усмихва пред асансьора в офиса. Аз съм просто една от многото.

I am the girl who waits for the bus with you at a bus stop. The same girl who sits on the seat next to you and stares absently through the window. I am the one laughing high at the neighboring table, who smiles to you in front of the elevator in the office. I'm just one of the many.

And I kept on reading, remembering back in 2007 when I used to work in infectious diseases at a famous institute in France. We were obliged to have all the possible vaccines when handling human contaminated samples. While waiting for the doctor to transform my arms into a colander with all the injections, we were talking, and it was quite a shock to observe how concerned she was: hepatitis C had become a serious public health threat in France and especially in Paris. Even more shockingly, no big, country-wide campaign to raise awareness and invite people to undergo tests had been organized.

It is thus understandable that I was reading the “Hepatitis-Minded” blog with great interest: because this blog does a fabulous job informing people about HCV and why it is important to know. I was thinking of how poorly informed people were in France, a country with a (still-)functioning health care system, and of how in a ravaged country such as Bulgaria thing would probably be so much worse. And when Toshka – the woman behind the blog – wrote a post to say that her treatment was successful, I decided to talk with her.

Toshka. Photo by Andrey Katanski, used with permission

Toshka. Photo by Andrey Katanski, used with permission

Who are you, Toshka?

A 30-year-old girl from Bulgaria. A copywriter and a blogger.

What is your story with Hepatitis C (HCV)? How did you discover you were infected?

By accident, as most of the people do. Along with some other tests, I was offered to make free HCV and HBV tests – and I said yes. I was shocked to hear the result – HCV-positive.

The problem is that I used to share the common opinion about this disease – I believed it only happened to those who used intravenous drugs. And I didn’t know that you could be infected without any symptoms. I may have had it for 10 years or more.

How did your family react?

I didn’t tell them at first. I didn’t tell anyone. I couldn’t find the strength to talk about this.

When I told them, they were shocked, worried, scared. Most of the people here don’t know that hepatitis C can be cured.

How was the treatment handled by the health care practitioners?

Fortunately, in Bulgaria the HCV treatment expenses are covered by the National Health Insurance Fund. There are also qualified and experienced professionals in this field.

Maybe because it’s an expensive treatment (almost 4,000 lv. [~2,000 euros] per month), there are a lot of bureaucratic issues and requirements to be overcome by the patients. It’s not an easy thing to do, concidering the fact that the treatment spans over one year and has many side effects.

Why did you start blogging about this?

Because writing is my way of rationalizing what happens to me and what I feel. I decided to share my thoughts online in an anonymous blog because I knew how important it is for everyone with this problem to feel supported and not alone.

I believed, and I still do, that my story could be helpful.

How is this extremely dangerous public health issue handled in Bulgaria?

There are many more myths and fallacies than information here. The common opinion is that HCV is a former drug users’ problem, that it’s impossible to be cured and it’s not so widely spread.

Just a few facts: the population of Bulgaria is fewer than 7 million people. According to the latest statistics, around 2,000 people are HIV-positive. And there are more than 400,000 people with HBV and more than 150,000 people with HCV, most of them still not knowing about their illness. Hopefully, they will find out about it before it's too late.

Are there NGOs dealing with it?

Yes, there are two NGOs. The first one, Hepasist, has contacts and influence to make some changes in the health care system and practices in Bulgaria.

The second one – Hepactive – is a patients’ organization that provides everyday help to people with hepatitis and their families. Hepactive provides information and support online and is now starting offline Mutual Support Groups.

What was the most surprising thing for you while fighting with this disease?

The hardest thing in the HCV treatment is, perhaps, the fact that it takes a whole year. Your habits and the way of life change considerably during that period.

There is something in particular that struck me the first time I read your bio on the blog. You write:

Имам една молба. Ако този блог ти действа потискащо, ако те кара да се чувстваш зле, използвай малкото хиксче горе вдясно. Сериозно. Излез на кафе с приятели, купи си нещо непотребно, разходи се. Животът е прекрасен и най-нормалното нещо на света е да искаш да си здрав и да не се тревожиш. Имаш избор дали да влезеш тук или не, дали да четеш или не. Използвай го!

I have one request. If reading this blog depresses you, if it makes you feel bad, use the small x on the top right of the window. Seriously. Go out for a coffee with friends, buy something useless, have a walk. Life is wonderful and the most normal thing in the world is to want to be healthy and not to worry. You have a choice whether to visit this site or not, whether to read it or not. Use it!

I felt that, on the contrary, you should invite people to stay and read especially if this is unpleasant for them. Why? Well, because this is real life and because blogging about it and being read is what will make people realize that HCV doesn't happen only to others. Precisely for these reasons, people should stay and read and reflect instead of just closing the page as if this doesn't exist. Would you comment on this? You may have changed your mind since the moment you wrote this and perhaps you discussed this with someone already :)

"Hepatitis-Minded" in a book: "Pozitivno". Credit by Toshka.

"Hepatitis-Minded" in a book: "Pozitivno." Credit: by Toshka Ivanova.

I still believe in what I wrote, and for me it's the same case with the book. You cannot force people to do anything. You cannot MAKE them feel, understand, or appreciate something. It's a matter of their own choice and it should be.

If one feels this story is too painful or too scary, maybe he/she is just not ready to read it. It's not only about HCV, it's also about what we are doing with our lives, why we are here, whether we love ourselves enough. Some people do not want to think about that. It's too painful. And even if they force themselves to read the book, they won't make any use of it.

“Pozitivno” is my story and my thoughts about these questions. To read it, feel it, understand it or not, is a matter of choice. And as I said, it should be that way.

You have collected all the postings from the “Hepatitis-Minded” blog in a book and you are starting a new blog. This is understandable. But what will happen to your HCV blog from now on: is the battle to inform finished?

It will stay and it will be updated on a regular basis. I will use it to share some valuable information and news about HCV.

But the personal thoughts and experiences now go to the new blog. I need a new beginning.

The road is long, but the sidewalk blooms with hope :)

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