While using the internet for a diagnosis is not recommended, there’s great power in finding other patients willing to share their own stories. Doctors may be too busy to properly inform or empathize on the level that patients need to hear. They may speak at a technical level well out of reach for most. Besides, they are not going through what the patient is going through, no matter how many times they’ve seen it. Likewise, family may be 110% supportive, but they too just don’t “get it” from the patient perspective.
But other people with the same diagnosis can share the evolution of their stories, share experiences and pitfalls, and provide support no one else can. Studies show that those who communicate with others who have their condition see improvements in their disease.
Don’t do it alone. There’s a place for doctors and loved ones, but also your new peer group. You might not just get the help you need from a perspective you can’t find, you can give back too.