How Hepatitis Made Me Happier: Toshka Ivanova at TEDxMladostWomen 2012


Uploaded by TEDxTalks on 07.01.2013

Transcript:
Toshka Ivanova Patients' organization "HepActive"
Hello, my name is Toshka. I'm part of patients' organization HepActive.
I'm here to tell you how hepatitis C made me happier.
The story begins five years ago, so first I will meet you with Toshka from that time.

This is me. The picture was made on a square in Venice.
I was there on my way back from an advertising festival in Slovenia. At this time I was working as a copywriter,
I really love my profession and I'm still working it.

The picture was taken at the end of 2007.


This picture is taken in the beginning of 2008. This is my second paragliding flight.
What you can see are the mountains surrounding the city of Sopot.
I'm not sure if I could explain the feeling of dangling your legs in 2000 meters above surface,

but this feeling is what I call "freedom".

And this picture is my favorite one. It is from the summer of 2008.

I was at "Smokinya" camping with friends.
At this very night we discovered that the bar offers shots called "Arabian blow-jobs" and "Brain tumors",

so this is the result.

I think my eyes here are staring at the future, where I can see the morning hangover.

So, two months after this picture was taken, I got this result.

I'm not sure if it is clear enough - there is a red "positive" stamp next to the Hepatitis C test.
I got it on September 8th, 2008.

And if you are wondering what is the first thought that came into my mind -
this is it: (now you are f*cked up...)

You are shocked, literally.

You don't know what's happening; you don't know where you are...
And I felt this way because of everything that I used to know about hepatitis C.
I believed that hepatitis C can't be cured. (hepatitis C can't be cured)

I knew that it's a recently discovered disease; that it was called neither-A nor-B virus;
and for some reason I associated it with AIDS.
I also knew that hepatitis C happens only to groups at risk
and you should be an intravenous drug user or a prostitute to get it.
And I knew that hepatitis C is a deadly illness.
I knew it leads to cirrhosis and liver cancer and if not immediately,
then in 5 or in 15 years the result will always be the same - death.
And as you can imagine, at this moment I was hit by a wave of emotions

that is impossible to manage.
I remember I was at work,
I got a phone call and I was informed of the test result. I just grabbed my things and left the office.
I was walking on the streets and I called my brother - I needed to talk to someone,
otherwise I was about to go insane.
I needed more than 6 months to get the courage to talk with my parents about that;
a few more months to tell some friends;

and almost 4 years to get to the stage that I could speak freely about it.

Actually, the place that helped me a lot at this moment - the place where I found information and support - was this forum.
This is the forum of hepatitis patients in Bulgaria.
The forum was initiated and created in 2007 by one person -
Radi, who is here now, in this hall.
The forum was meant for people with hepatitis in Bulgaria,
to provide them with information in Bulgarian;
and to give them a chance to talk with somebody with similar problem who can understand.
Two years later the forum has grown to become patients' organization HepActive.
What I learnt from this forum is that there are 150 000 people with hepatitis C

and more than 350 000 people with hepatitis B in Bulgaria.
It is a huge number of people.
It's more than half a million Bulgarians.
If you cannot get a picture of how many are these people,
you can imagine that there is a person with past or present hepatitis contagion on every row in this hall.
What I also learnt is that hepatitis C is a disease.
It may look quite obvious but it took months to realize it.
At first, you see the disease as a death sentence.
I learnt it's a blood transmitted disease
and besides intravenous drugs there are a lot of other ways to get it: (hepatitis C is a blood transmitted disease)
during a routine visit with the dentist,
during gynecological examination, manicure, pedicure, tattoos, piercing, surgery -
as a whole, every blood transmitting procedure contains risk about hepatitis C infection.
And maybe this fact explains the numbers above.
I also learnt that most probably I've been living with hepatitis C for more than 10 years.
And the reason why I haven't found until now was that I did not have any symptoms.
In most of the cases the hepatitis C infection goes without any symptoms
or with symptoms of a cold - temperature, weakness.
No one makes a hepatitis C test when he gets a fever.
That's why I have been living with the virus for 10 years without knowing when exactly the contagion happened.
I learnt something extremely important - that hepatitis C can be cured. (hepatitis C could be cured)

...and that in 50-70% of the cases the treatment is successful.
I learnt that it can happen to me.
And it may has been quite comfortable for me to put people in "groups at risk"
and to think that it won't happen to me, just because I'm not in a group at risk.
But actually all the people going to the dentist are at risk.
And yes, you can die from hepatitis C, but life also makes you die, after all.
We have a common joke in the forum - it's much more likely to die with hepatitis, than because of it.
And we also have some other jokes.
(If the hepatitis C doesn't kill you, the Health Fund will do)
The next year I was waiting for treatment.
At that time there was a waiting list for hepatitis treatment.
I applied for treatment and I was waiting for an answer from the Health Fund.
For this year of waiting I learnt that I lack an important ability for diagnosed in Bulgaria - the science to be patient.
After the year of waiting, the year of treatment began.
I call it "the year of the interferon".
The hepatitis C treatment is made with hypodermic injections once a week and you take pills every day.
The treatment is hard;
the side effects are similar to those of a chemotherapy.
The thing is that you feel weak,
you have no strength left.
In general, it was hard to get up from bed and I had enough power only to go to work,
to stay there for 8 hours, and then go back in the bed.

The treatment was hard, but after all, it helped me to learn some things.
It helped me to find out which are the most important things for me.
Which things deserve energy and efforts, and which things are just bullshits.
The trouble with your car, the color of the wallpapers, the problems at your job -
they are important, of course, and you have to think about them.
But the main thing is to put them at the right place and to give them the right amount of energy.
Because of the side effect of the medicines, I've managed to realize how many things in my life I took for granted.
How many things I had and considered as something I will have forever.
Like the ability to wake up every morning without feeling pain.
Or the ability to breath, to climb up the stairs, to run -
I really missed running at that time.
And because of everything that happened to me I learnt how to take care of myself.
Something that I thought I could do, but I was wrong.
I learnt to listen to my body,
and when my body tells me that it needs to take a rest - to take a nap.
When my body tells me it needs energy - to eat a steak.
I learnt to listen to myself, to pay attention to myself and to put myself on the first place.
The next time when you feel sick and still go to work ,
because it's sooo important and because there is no other way - think about that.
Think about whether you and your health are more important, or your job.
As a whole, it was a period when I was trying to stay disciplined,
not to show any weakness, because no one of my colleagues or friends knew what was happening.
I was trying to stay strong
and as a result of that - during the eighth month of the treatment I broke down.
I started a psychotherapy treatment.
I will never forget the first time when I got into the therapist office,
I sat on the chair and I started talking and crying.
And for more than an hour I was just talking and crying.
I think this was the first time in my life when I admitted that I was weak,
that I can't do this alone, and that I need help.
The whole period - waiting for a treatment, the treatment itself, and the recovery after that took 3 years. (Three years of self study)
For me this time was important to learn something about myself.
I was painting a lot, I was making a lot of photos -
you are seeing a self-portrait, which I took during the second month of the treatment.
I guess I was taking so many pictures of myself willing to learn who I am.
Or maybe I have been the only available model.
I was also writing.
At the beginning of the treatment I started blogging -
the blog was anonymous, of course.
With my typical modesty I chose the name of a star for a nickname - Altair.
I was aiming to describe not the side effects that happened to me,
but the way I was changing.
The way I felt when I found about the disease,
the way my life changed, the way I was seeing the world now,
the way I was communicating with others... everything.
Because everything was changing.
And it was important for me to write about that in order to understand it better.
And I knew that some people will find it useful to read about that
and to see that they are not the only ones going through this thing.
And that they are not the only ones scared.
This is the reason why now at HepActive we organize support groups for patients with hepatitis.
So the people with this problem have a place to go and talk with someone who will understand them.
Because this is extremely important.
The stigma that Yulia mentioned is the same here - it happens also to those with chronic hepatitis.
And the harm the stigma can do to people with hepatitis is much bigger than the harm from the hepatitis itself.
When I finally reached the stage where I could talk about this problem - it really took me a lot of time,
I gathered the stories from the blog, completed them and published the book "Positive".
And I wanted to publish it with my real name this time.
Because if I really want to change something,
that would happen only if I speak openly about this problem, with a name.
What I'm trying to tell you with this talk is that I learnt something from hepatitis C.
I learnt that to be happy or not
is something that depends on me, not on the things that happen to me.
You have just found out what is hepatitis C; and it didn't cause any pain, I hope. (congratulations)
If you want to learn something about yourself, too, I can offer you a simple exercise.
Close your eyes for a moment
and imagine that tomorrow will be the last day of your life.
I don't want to scare you, but in theory this is a true possibility.
Then ask yourself - do you like your life? (do I like my life?)
Is this your life you are living, or you are living according someone else's expectations?
Is this the life you have dreamed about?
Do you like your job, your friends, everything that happens to you?
And if the answer is "No"- change it.
It won't be easy, but there is no one else to do it. And there is no time to put it off.
Thank you.