I shared this with @Exsexgod recently, but I think it’s relevant for any patient thinking about giving up. Trust me, I have been there hundreds, if not thousands, of times myself.
Please, please do not give up. We genuinely need all of us in this battle, as we are the proof that this disease exists and has destroyed countless lives. I can assure you, myself and the PFSN team, along with the PFSF, are working extremely hard every day to find a way out of this. It takes time, but we are making progress.
If we give up, what we are saying is we are ok with this problem being dismissed. Your life - our lives - are worth far more than that.
I am always here to talk if you just want to speak over the phone. Let me know and I’d be happy to organise something.
Take care
Same applies to any patient thinking about giving up. Reach out and I’m happy to chat.
Take care.