Good luck Dragonslayer! Why don't you just play it by ear...if you are handling the treatments and nobody can visably tell anything is wrong with you then heck, don't worry about telling anyone? For some people it's not as completely evident that something is wrong...I was one of the opposite people it made a HUGE difference in me so I had to say something.
It's not right that there is SUCH a stigma but...it's the way it is. Most of my friends here at work wouldn't ever talk to me or come near me if they knew what I had really had.
I only told my immediate family and 2 close friends. No one at work. I've been happy/comfortable with that.
I can not speak for all trials but for this one the screening process was just me supplying them with my records from my recent blood tests, biopsy etc. so they saw I fit the criteria for the study (geno 1 naive in my case). Then they perform EKG and take copious amounts of blood. I will also have to give them 24 hours of urine and a fecal sample before starting. If I remember correctly in another trial that I did not participate in they mentioned something about chest x-rays in addition to the other stuff so I think it depends on the drug and what they are watching for. Good luck in your decision on participating in a future trial. I hope that helps.
If you choose to go on this trial good luck to you, it sounds very promising. The only ones who know that I am HepC positive are my immediate family, my wife and a few friends most of them I don't even see anymore. My wife's family doesn't know either and I hope they never find out, if it were me this is what I would do. I would tell the people who know I have HepC that if I need to tell anyone else who doesn't know, that I would be telling them that I was on chemo. That way if anyone ask anyone else who knows you, the person who knows already knows what you're saying. That's it, if anyone ask you any questions, I would just say that this is very personal to me and I really don't care to share my personal healthcare with anyone at this time, maybe I will at a later date. Personally I hope I never have to tell anyone at work, I work with peace officers and it wouldn't be a good idea. At my job it's supposed to be illegal for a supervisor to share anybody's medical history with another employee or anyone else period. The problem with that is supervisors are human and people gossip, and I trust nobody. That's just me, I wouldn't feel like I was lying if I told anyone that I was on chemo b/c I don't see a difference. To take it a bit further, since I work in a professional environment if I had to absolutely had to tell someone I would have my doctor write a note b/c I had to do that once before, and the doctor asked me what I wanted him to say. The last time it happened to me and I became toxic in 2003 and I had to miss a bunch of work all the doctor wrote was that I had liver disease and was under his care. I told both supervisors that day that I had HepC and I told them b/c of the stigma attached to the disease that's it's imperative that nobody find out. I don't work there anymore, oh and they didn't ask me anything about how I got it or anything. I think it's illegal for them to go there as well. I don't know your job situation, but that's what I would do. God Bless
Unfortunately there is alot of stigma, just look at how we feel about it. I dont care if someone is a junkie or a nun, no one deserves to have this virus. There is so much judgement going on and my reality is if your sick you deserve help.
I think there are alot of people out there who agree, however there are alot who dont understand, sooooo I would just say to anyone you are not really close to outside of your medical team is that you are on chemo, and frankly, you'd rather not talk about it, but thank you... This is one big crazy world and you can get all the support you can take right here and from whoever you are close to.. that is my 2 cents... M
I decided I finished treatment 9 weeks ago and did not tell anyone but 2 close friends and my immediate family. I did stop doing anything unnecessary and just did work and things I actually had to do on treatment. For me, treatment was hard, but not impossible to still live my life.
Now that I am off treatment I am glad I did not go public, there are days as I wait for the results I just forgot about hepc and I am grateful. Maybe some day, if I clear I will be more forthcoming, but handling my own emotions was more than enough for me. Handling others questions and issues is just to hard for me right now.