BULGARIA
15.09.21
I spoke to Svetoslav about what life is like for him in Bulgaria, he tells me his story here:
I had a sudden onset in the winter of 2007 when I was 26 years old - one day I started feeling fatigued and my brain was foggy and on the evening I also had chills. I never recovered since then. In the beginning I was still relatively functional and was able to force myself to work but as time passed I deteriorated. It's fair to say I was abusing with alcohol till 2009 so this might have played a role.
I was never diagnosed with CFS or ME. When I first went to doctor all my blood tests were normal so he sent me to psychiatrist. I was diagnosed with depression and borderline personality disorder. I, however, am not convinced these diagnoses have anything to do with my chronic fatigue and brain fog. So yes, it's difficult to impossible.
Well, I can't work anymore. I was able to work up until 2016, but then I deteriorated and started experiencing post exertional malaise. Which means I couldn't anymore force myself because that made me even sicker. Now I spend about 14 hours a day in bed and can't do much but browse websites. My old mother provides for me and I find this humiliating. At one point I was even thinking to end my life.
I don't know such doctors. The ones I've visited don't seem to understand this disorder. I hear phrases like "You don't have a disease", "There's nothing so much wrong with you", "It's all in your head", "You need to find a job", "Why don't you train?" all the time. This only suggests they have no idea what's wrong with me. There might be doctors who are interested but I haven't met them.
The thing is it's impossible to get a ME/CFS diagnosis in Bulgaria, so one's only chance to get disability benefits is to apply with some other diagnosis. I'm currently applying for the first time with the diagnosis from my psychiatrist which is borderline personality disorder. They gave me 50-70% disability for it which means I should get the minimum disability benefits but I'm still waiting. And it's for one year only, so I should reapply every year. Lastly, I believe age also matters - the older you are the better chances you have.
Again, to have a proper treatment one must first have a proper diagnosis. I'd like doctors to stop prescribing antidepressants, CBT and GET because they are not helping and can only make things worse.
Bulgaria is the poorest country in the EU so I don't have much hope. If I have some hope it's because of the richer countries which make some proper research and have a better understanding of the disease.
I spoke to Svetoslav about what life is like for him in Bulgaria, he tells me his story here:
- How did you get ill?
I had a sudden onset in the winter of 2007 when I was 26 years old - one day I started feeling fatigued and my brain was foggy and on the evening I also had chills. I never recovered since then. In the beginning I was still relatively functional and was able to force myself to work but as time passed I deteriorated. It's fair to say I was abusing with alcohol till 2009 so this might have played a role.
- Has it been difficult to get diagnosed?
I was never diagnosed with CFS or ME. When I first went to doctor all my blood tests were normal so he sent me to psychiatrist. I was diagnosed with depression and borderline personality disorder. I, however, am not convinced these diagnoses have anything to do with my chronic fatigue and brain fog. So yes, it's difficult to impossible.
- How does this disease affect you?
Well, I can't work anymore. I was able to work up until 2016, but then I deteriorated and started experiencing post exertional malaise. Which means I couldn't anymore force myself because that made me even sicker. Now I spend about 14 hours a day in bed and can't do much but browse websites. My old mother provides for me and I find this humiliating. At one point I was even thinking to end my life.
- Do you know of any support groups or associations in Bulgaria for those suffering from ME/CFS? If so what are their aims?
- Are there doctors who would be interested in the research into ME/CFS?
I don't know such doctors. The ones I've visited don't seem to understand this disorder. I hear phrases like "You don't have a disease", "There's nothing so much wrong with you", "It's all in your head", "You need to find a job", "Why don't you train?" all the time. This only suggests they have no idea what's wrong with me. There might be doctors who are interested but I haven't met them.
- Do patients receive adequate support? Can they receive disability benefits when they are unable to work?
The thing is it's impossible to get a ME/CFS diagnosis in Bulgaria, so one's only chance to get disability benefits is to apply with some other diagnosis. I'm currently applying for the first time with the diagnosis from my psychiatrist which is borderline personality disorder. They gave me 50-70% disability for it which means I should get the minimum disability benefits but I'm still waiting. And it's for one year only, so I should reapply every year. Lastly, I believe age also matters - the older you are the better chances you have.
- What changes would you like to see to the treatments currently proposed in Bulgaria?
Again, to have a proper treatment one must first have a proper diagnosis. I'd like doctors to stop prescribing antidepressants, CBT and GET because they are not helping and can only make things worse.
- What does the future look like for ME/CFS patients in Bulgaria? Is there reason to be positive?
Bulgaria is the poorest country in the EU so I don't have much hope. If I have some hope it's because of the richer countries which make some proper research and have a better understanding of the disease.