I was born with a rare neurological syndrome causing me intense pain, which was difficult to manage. When I studied at secondary school, I could do my homework and fall asleep with the help of a few pieces of ice wrapped into a towel and put on my forehead. And it has always been a progressing pain. When I was close to graduating from secondary school, I frequently started to lose consciousness from the pain.

Within whole my life I could never get an adequate medical examination, diagnostics and treatment in several countries as doctors didn’t see it as a problem. Probably because MRI didn't show the issue, but not each medical problem can be visible on scans; then doctors argumented their approach as I was able to walk, etc. Solutions I have now I had to come to on my own, and the problem is that I lost lots of time searching for some way to ease the pain for decades. My body is already exhausted from the pain and attempts to fix it. I am clueless about how long I could live.

The problem on the global level is that there are no recommendations and guidelines for medical professionals to follow for diagnostics and treatment of fibromyalgia, strong chronic muscle and/or neurological pain of unclear nature. I think such documentation should be created and adopted internationally by the World Health Organization to prevent deaths from giving up from pain and suicide, as not everyone can live with it. Also, people with this type of medical problem should have the right for euthanasia when no measure works and the patient is already barely managing. If people like me could not live normal life, we should at least have the right to choose to die with dignity and without enormous suffering.