Suggestions...What do I tell family on treatment??

[BellaMamma]

Starting treatment November 17th or November 23rd.  I have surgery tuesday morning,(so I need time to recover before starting treatment) and my appointment with the pegasys nurse is on wednesday (the 4th).  Only my mother, father, and one brother know that I am starting treatment.  My mother has Hep C, but is fortunate enough to have a healthy liver at age 53, and has been clean for 23 years, so she understands.  My father is supportive because he would support any intelligent decision I make.  My brother is mentally handicapped, so he doesn't fully understand the whole situation, but he grasps the subject of "chemo" (it was the easiest way to explain to him).  Other than these people, the rest of family has no no no idea what is up with me.  All they home is that I am back home with my parents, doing excellent(clean),  have slight health issues.  My family(besides those mentioned) is nieve and judgemental when it comes to situations like mine.  Also, my family is very very large.  It would not be in my best interest to tell them what is going on.  However, they are very supportive when it comes to other things, such as my health, and just checking up on me to make sure that I am happy and doing great.  They constantly call and stop over to ask me or my mother how I am.  So what do I tell them is wrong with me when I am on treatment??  My mother and I do not like to lie, but we are also very private when it comes to certain things.  Like I said, my family is nieve to situations like this, so Pegasys treatment is the last thing they will suspect.  I can't use the exscuse about thyroid issues because most of the women in my family have thyroid issues.  I need help, can anyone suggest ANYTHING AT ALL??

[Isobella]

I told a few people outside my immediate family.  Looking back I wish I hadn't.  My tx was relatively light as far as sx.  

I told those that didn't know that I was having severe issues with anemia.  That explained the fatigue.  That gave me leeway to explain why I couldn't be in the sun, or eat certain things, or drink. My "anemia" meds were upsetting my stomach,or  I can't drink because of my meds....stuff like that.  

Alot of my family that didn't know are nurses, so I soon got good at changing the subject away from "why do you sound so tired/out of breath?"  I say I'm really anemic and ask how their kids were....stuff like that.

One dear friend got pretty nosey wanting to know what I was on and I told her I was in a drug trial and didn't know.  Kinda the truth because I was in a double blind trial, lol!  Google anemia learn a little about it.  I even got creative with some non-medical people and tied my sx into bone marrow issues.

Good luck.  

Isobella

[Rockerforlife]

All you have to say is    "ITS PERSONAL"....end of story.

[Mary4now]

Or you could tell them you will be going through chemotherapy, for a problem with your liver.  

[Rockerforlife]

It none of their business....ITS PERSONAL...you have the God given right to  say nothing.You will lose more than you gain by telling everyone you a contagious disease.

[nygirl7]

I just said I was on chemo - pretty much most people have some modicum of class and after they said "oh for what?" and I"d say "I don't want to talk about it but thank you for your concern" they'd let it go. But some..........Jez you can right to their face "it's none of your business I don't want to tell you" and they will still keep at you.  You just have to learn that it's really NOT lying and then stick up for yourself.  There is a huge stigma on our disease though and for every person you can have an intelligent conversation with and tell them the FACTS - that is a good thing.

Basically, it's up to YOU who you want to know but from experience...the less that know usually the better cause you just never know who is a big mouth that will tell everyone they can think...so be wise.

Good luck.

[BellaMamma]

Thank you for the comments and ideas.  I took something out of every message..the anemia idea was great, too.  I have thought about saying it is chemo, but I don't want people to feel bad for me.  Does that sound foolish or horrible??  

[Isobella]

Nope....it sounds just like what we all had to think thru when we were txing =)

I tried the chemo thing once too.....and then the lady I said it to told me her daughter had hep c.  I felt like a real crumb after that, so I stuck with the anemia thing.

(btw....I finally fessed up to her and we've been good friends since.)

[IAmTheWalrus]

I found it easy and theraputic to discuss it with some members of my family. In other cases, it was too complicated for them. Even though intelligent, it is difficult for some to understand. Trying to explain sometimes just seems to widen the "understanding gap". I sometimes wish I had told less to others.

It's a tough call and depends on a lot of individual circumstances. I don't think there is a "one-size-fits-all" answer. For sure, it is your right to so as you see fit. Don't let anyone make you feel like you owe them an explanation unless you feel that you do.

Best luck!
Brent

[merryBe]

please check out what I just posted on my Melatonin thread....the article at the bottom of the thread....it shows how to recover from surgery quicker, especially liver people need to take note. Good luck with your surgery.

MB

[Joey_M]

I have done treatment twice. When I first did it, I told all of my friends and family. Nobody reacted negatively but I was very disappointed in many people I told that weren't supportive when i needed it (like anyone else could understand some of the crazy side effects). Last round, I only told a few people and also joined a Hep C support group.

Bottom line - it was best for me to only tell people that could help me in some way.

[Marcia2202]

I hope your surgery went well.

I told people I was on chemo for hep c. Interferon is listed under chemotherapy. It is also used for certain cancers, so it is not wrong. I personally did not have any negative reactions from anyone. But I live in Denmark, I understand from the forum that the disease is not that well tolerated in the US.

There are always people who don't understand, feel sorry for you, are supportive, don't care or react otherwise. No matter what you tell them. It is not that bad, if people feel compassion or sorry. At least one finds out that they are caring human beings, instead of ignorant slobs. :-)

If I was in your situation, I would play it by ear. You will know whom to tell what, when you get there. You will most definitely become anemic during treatment, so that is no lie. The reason you become anemic are the drugs. You might have mild sides, so Izzy's strategy would be perfect. I was in bed during the whole ordeal, so anemia wouldn't have cut it as an excuse.

Good luck with everything. Marcia