This is how a chronic illness can steal your life when it strikes at 27. In the first months after diagnosis, you're shocked by the new and terrifying symptoms, but you remain optimistic, trusting that doctors will help with various treatments. However, after several years pass without improvement, and even with progression, you cling to hope because, despite the lack of approved treatments, there are still options.
Then, the government tells you that these options are not funded because they lack evidence-based medicine (EBM) approval. So, you work tirelessly to find ways to collect money. With that money, you buy treatments that help only about 10%. Meanwhile, you've virtually lost all your friends because, in reality, people don’t want to associate with someone who is always sick.
As a man, you realize you'll probably never have a family of your own; no woman wants a sick partner, and no children either. So, when your parents pass away, you'll be completely alone. Today marks the 10th year of my illness. I am now 37 years old, and the future has never looked bleaker. For my condition, there are no promising drugs in development. And even if there were, I'm excluded from trials due to biased classifications.
Here I am, 37 years old, still very sick and homebound, with no prospect of a better life. What would you do?