What do you tell people?

I’ve had symptoms for a month and they’re progressing rapidly…muscle and skin wastage etc. In that time I’ve seen nobody I know but that can’t last. What do you tell people who see you for the first time in your wasted state. Do you simply explain PFS? Or come up with a lie they might understand.

I posted a video on China’s YouTube. I almost began to show my cards to everyone. We need to be paid attention. We are patients, not monsters


I think everyone is different, but personally, I would try and explain honestly, clearly and slowly what is going on with you.

I think one of the mistakes patients make when they’re first affected is trying to explain everything in one sitting, forgetting that for the average person this is an extremely bizarre disease and one which is not easily understood. Too often they are in the worst of it and don’t communicate their situation and the bigger picture clearly.

I would start by just telling them your personal story. How long you took the drug, what happened on it, and what has happened since. Clearly explain your symptoms as best you can. Don’t try and explain why this has happened to you, just explain what has happened.

From there I would explain there are many others experiencing the same issues. Share our YouTube channel with them, which includes many patient stories and our explainer video about PFS. Those experiences help contextualise your situation and demonstrate this is a real condition.

From there, you could then explain to them the bigger picture of PFS. Share some of the meaningful scientific literature and explain we’re still trying to understand the disease.

Take it slow, be clear with what has happened to you personally and if someone reacts negatively, don’t be surprised. This disease is highly complicated and unbelievable, so it often takes time for people to understand.

Good luck.


Depends on how much you know them. I wouldn’t say pfs, lot of people won’t understand. Would say you got pretty severe potentially permanent side effects from a medicine you’ve been taking.

I would definitely recommend resistance training to combat muscle wastage. Otherwise , once it’s lost, it’s probably harder to regain, because muscle metabolism and hormone levels are somewhat related. I do so (never quit during or after fin) and never got muscle wastage, maybe only on the wrists and face (46 days pfs).


The only person I tried to tell about my condition is my brother. And I feel he doesn’t really believe me thinking “it must be all in my head”. Well, my appearance (at least currently) doesn’t raise any questions. I do look a bit worse, but it could be easily attributed to my ageing(I believe it’s some skin changes due to isotretinoin). Same for the hairloss.
But what’s bothering me is questions like “Where’s your girlfriend” or “Why aren’t you married in your age”. I feel it would be really uncomfortable to explain the whole story. Moreover, even those who aren’t asking any questions are likely to think something must be terribly wrong with me.


hhhh,it is true,:sweat_smile:

I tell everyone. I’m past caring after suffering this shit for so many years. Most don’t get it but I’m past giving a damn… People need to know and no one on here should be afraid, embarrassed or ashamed. When this comes out one day we’ll be the ones in the ascendancy while the doubters/dismissers will be the ones left ashamed I do appreciate that getting emotional being unable to explain it very well and then getting the look of disbelief can be a barrier after a few attempts but don’t give up. Fine tune your approach .I console myself in the knowledge that its down to their lack of caring, intelligence, selfishness etc. Those who are genuine and good to have in your life are the ones who will listen and the important ones to have around