I would agree with @Toughluck24 and @Greek - telling my close friends about PFS was the best thing I ever did. I hid it from everyone except my family for almost 7 years and it was fucking exhausting. A constant act that drained what little energy I had. Trying to fit into societal norms (getting a good job, pretending I was “advancing” my position in life, etc) just drained me.
One of the problems we have with this disease is that because it’s so heavily stigmatised, we are an incredibly anonymous patient community. This leads to inaction on the regulatory and research fronts, which leads to dismissal of the disease by clinicians and others, which allows this cycle to continue. Speaking up is an incredibly powerful, but simple, action that any patient can take. If not publicly, then at least to your close friends.
If you choose to do so, come prepared. Bring the medical literature, share other patient’s stories and calmly talk through what has happened to you. Don’t theorise about what it is or why, just explain your story and then discuss what has been found in the medical literature at a very high level. By showing them other stories, you also show that this isn’t just you, or that you’re delusional. My story is one of those you can share, and I can assure you that I am not delusional
I’ve also connected with families of other patients on their behalf, when the situation is difficult to explain. That’s something I’m happy to do for any patient - to explain to their loved ones that unfortunately they are suffering from a severe and complex medical problem and need their support.