My name is Biljana Kosanovic and I was born in 1971. I’m married and I’m the mother of two children aged 14 and 9. I was diagnosed with PH in April 2016. For the last 6 years, I’ve been struggling to find out the real cause of my condition, of my illness, of my constant exhaustion. No one can understand my real condition, since I look and behave in an ordinary way, but sometimes I cannot take two steps, or even get dressed in the morning. Most people cannot understand that, because when they see me, they think I’m ok.

They are aware that I have some health issues, but they accept it as something which occasionally makes me fell unwell, but nothing more than that – nothing serious or severe. I just say nothing, I keep quiet, because there is no purpose in saying anything. I just smile and nod my head. No matter how I feel, and most of the time I feel unwell, I always say I’m OK… But in fact, only I, and maybe other PH patients, know how I really feel.

People are usually surprised and they say: But how? So what is it? What is pulmonary hypertension? No one has ever heard about this illness, starting from general practitioners and all the others… But that’s it, no one knows what to do further, there is no cure. This is where the story ends, because they also cannot do anything to help me…

How do you feel? They ask me.

I am fine… I reply and say nothing, because there is nothing more I can say.

My friends consider this as something strange, because they only see me during those few hours when I can function normally. They never see me in a situation when I cannot even take a shower, when instead of that, I go exhausted to bed since this is the only thing I actually have strength for. I don’t think they see me as someone who is pretending, not that, but I should explain to my children that at certain moments I absolutely cannot get up and get them a cup of tea… I simply do not have the strength, not even to take a few steps. I often cannot get up from bed and help them. It’s really difficult to explain that to my children…really difficult. I’m really trying to shield my children from all of this, and I have been explaining what this illness is about to my husband, I’m not sure whether he will ever understand it. He got used to my being 99% in charge of everything in the house and all the other activities and obligations, but the situation is deteriorating gradually.

My situation can be compared to a car which at first was perfect and after that all of a sudden bad things started to happen: the clutch and brakes don’t work, as well as the other parts. At first the car has some difficulties and after that it breaks down. That is how I got myself into a situation from a perfectly healthy condition to a condition where I‘m not able to do anything. The acknowledgment of my being seriously ill was devastating, especially for my parents, because they still do not know what I suffer from. Since we are a big family, all my cousins are shocked and really concerned, especially because they all know me as a strong and active woman, who could go beyond her limits.

The places that make me most annoyed are health institutions, and their behavior towards us who suffer from this condition. When I go to the Community Health Centre for a prescription, the first thing I need to do is to climb all those stairs, and for me climbing the stairs is just like climbing the Himalayas. As someone who’s health is threatened, I don’t have any priority. There are a lot of patients at the Community Health Centre who only come for a referral letter, and I have to wait in the line.

I don’t have any priority, I’ve never had any. The staff at the medical center are usually concerned about whether the code on the prescription is properly written, did I bring the correct papers, and other formal things. None of the doctors have ever asked me how I feel, or if I need anything. Everything I do, I have to do by myself. General practitioners don’t know much about how the system works, so this is why I have to study everything first and then go there and ask for what I need. I tell them which referral letter to give me, what code to enter, what to write, which is simply incomprehensible.

I feel really discriminated because I don’t have the possibility to be provided with a portable oxygen concentrator by my health insurance. This is something that could drastically help me, because I would then be able to go wherever I want, whenever.

I cannot explain the feeling you have when you stand or walk and your oxygen level is decreasing and your whole body is craving oxygen, it is fighting to survive.

So, I have to go back to that story about the car again. I feel like a car. As long as I have oxygen I can function, but when my oxygen level is low… I’m like a car without any fuel. This is when I have to stay at home, the range of my movement is 4 meters, just how long my oxygen cannula infusion is…