Here at Patient Worthy, we believe in the power of patients. We know that sometimes information you get from someone who shares your disease is exactly the information you need. Hearing another “regular person” talking about Cushing’s disease, for example, can actually change lives.
For one thing, we may act differently around a fellow patient than we do around medical professionals. (Just the term “medical professionals” indicates a formality and sense of acknowledging authority, for example).
Some people feel as if they let their doctors down if they didn’t have such a great week being perfectly compliant with their treatment. So they may fib or fudge or (or entirely skip over!) that part of the doctor-patient conversation.
Some people worry about sounding stupid when asking their doctors or nurses questions—so they stay quiet. In some cases, you may not know that something that happened to your body between doctors’ visits was Cushing’s-related.
You may not mention it to your doctor.
But people are generally more open when talking about their disease to someone else who has it. Face-to-face, over the phone, or online conversations with others who “get it” can be cathartic, validating, and important.
So often with rare diseases like Cushing’s, there’s no one you know dealing with the same challenges you are. And do any of us really believe that a person who doesn’t have Cushing’s wants to hear us talk about it?
But speaking with another Cushing’s disease patient is a different story altogether.
That’s why sharing personal experiences is so important. If you’re a woman and you hear another woman talk about menstruation issues that you have too, it may encourage you to talk to your healthcare team about it. After all, now you know that it’s not all in your head; it’s not just you!
We encourage everyone at Patient Worthy to share experiences through our comments section or on our Facebook page—that’s what builds community, after all.