Should I tell my friend about my illness?

I have a problem I hope you may help me with. I only have LCIS - my friend knows about that.



My friend has advanced pancreatic cancer almost certainly inoperable, diagnosed Feb 2008. That means she is going to die of it. Right now she is talking, walking, and driving. Some days she has bad days and good days. She says she's hoping to survive for 3 years. (I think the average would be something closer to 12 months, so the average survival might be until roughly next spring.



I had surgery for my carpal tunnel (through workman's comp) in Feb and Mar 2008. Last fall and winter, before my friend was diagnosed with pancreatic cancer, I told her that some of my docs were saying it was possible I may have a rare disease. It has a very variable outcome. The average survival is over 10 years. For some people it does not progress, and some people die of it.



Most of my current symptoms are in my hands, with puffy fingers, and decreased dexterity, and I limp after walking a few blocks. I've had foot problems in the past, so they may not be connected with my rare disease. My friend (who is a nurse) was the first to notice I had puffy fingers. I told her last fall and winter that a doc suspected I may have this rare disease, but I was only diagnosed in March 2008, after my friend's pancreatic cancer diagnosis. I did NOT tell my friend about my rare disease diagnosis.



I did not want to burden her with my problems, as she has so much on her mind. She does NOT want to talk about how she is feeling. I want to respect her wishes.



I couldn't stand the specialist who diagnosed me. He was kind, but he smiled the entire time he was diagnosing me. I have an appointment to see a specialist at a major institution in the fall. I don't think this affects things very much as the specialist who diagnosed me said there is nothing I can do.



It is certainly possible that all of my carpal tunnel symptoms were and are due to my rare disease. So I don't know if workman's comp is going to make me pay for my carpal tunnel treatment.



I don't want to burden her with my problems. I'd ask on my rare disease online support, but they only support positive posts. (You get blasted on the forum if you complain. Some forms of the disease have a MUCH worse prognosis, and some aren't life threatening at all.) I can't stand that attitude. I am much more into direct, flat out communication - good, bad, whatever.



Should I tell my friend about my rare disease? I am afraid I will let slip some of this stuff when I talk to her.

Thank you so much, Dotti, particularly since you are a nurse too.



She only knows what I told her about the disease last fall. If she hadn't pointed out my puffy fingers last summer, I may not be diagnosed with this today (thank goodness for the observation of nurses!) as none of the doctors or physician assistants picked up on my symptom (I thought it was part of carpal tunnel.)



I think our lines of communication are good. I take her to about 1/3 of her medical appointments. During her daily rad/chemo period 2 months ago, I took her to almost all of them.



We went out for lunch yesterday, and she said this week her radiologist told her that there was minimal tumor necrosis (in other words minimal response to her therapy), then he said "Oh, well." (which means it is inoperable and it is terminal.)



Would he say, 'Oh, well' if it was his life in question? I told her I'd be really angry too, and he needed to learn more about talking to patients. I've tried to make it safer for her to open up. She wants her docs to be more responsible for the outcomes of their treatments. I told her that some tumors have different cells in them, some respond and some don't. But that probably wasn't the right thing to say. But I can keep trying.



Thanks so much again, Dotti!!!!

Thank you for your support, omo. I don't want to burden her, but I think she is wondering about some of my extra symptoms and extra appointments. I don't have to tell her about my prognosis unless she asks, because it is so variable. Thanks again, omo.

Thank you all so much for your opinions!!! I do get counseling, and will thoroughly discuss this with my counselor. I wanted to post it here (rather than in the LCIS or just diagnosed topics) because then I'd get exposure to more people who had been closer to my friend's shoes - be in a more frightening position.



My counselor said if I tell her, it must be for my **friend's** benefit, not for **my** benefit. I don't want my friend to feel like she has to take care of me when she is ailing.



She very well may not remember many details about what my rare disease entails. (I get mired in details often.) It was several months after I had repeatedly told her I had LCIS, and sharing my anxiety about LCIS (this was in spring 2006, long before her diagnosis) that she asked me if I *had* LCIS. She *definitely* does *not* know about my decreased average survival span (because I didn't know it then), and I don't intend to tell her that.



It helps me very much to know that if you had a very bad prognosis, you might feel 'left out' if you didn't know. I will discuss this and practice thoroughly with my counselor.



Thank you all so very, very much!

It makes perfect sense, Janis. Thank you so much!