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To tell or not to tell....

Posts: 6
Joined: Oct 2013

Hi everyone,

Here's my resume in short:

Age of 12- Stage 4 Neuroblastoma

3 years of treatments

Age of 17- AML, Allogeneic Peripheral Stem Cell Transplant

Current Status: I'm Thank God, a few years post transplant, and I am Thank God well!

Now for the question:

I know of a few families who were determined to keep the diagnosis a secret. Whether it was out of a desire to protect loved ones or they couldn't fathom the idea of become the takers..... or they didn't want people to treat them differently. Whatever the reason, its their decision.

 I absolutely refused to keep it a secret, I didn't want the added pressure of pretending..... in addition I felt that I would need my family and friends to help me through. I was right, I couldn't have done it without them. I also did not want to pass on the opportunity of having people pray for my recovery (they can't do that if they don't know). 

I didn't go around telling everyone, but I was not under pressure to put up a facade that everything is just fine when it wasn't. As for being treated differently, you set the tone. If you act normally and communicate your needs and boundaries (ex. If you don't want questions) your friends will do the same. Keep the lines of communication open.

I really want to hear any comments you all have on the issue of telling vs.keeping a cancer diagnosis secret.



P.S. I am here if anyone wants to talk about Neuroblastoma, AML, or just wants to vent about cancer ( I know u gotta keep those spirits up, but every now and then venting is just fine!) Just send me a message and we'll talk.

lynnyb323's picture
Posts: 11
Joined: Oct 2013

I kind of get where you are coming from. In my case the issue was about me feeling comfortable to tell. I ended up sharing my story with others and that's how I found many of the other survivor friends that I currently have. I think the option to share the diagnoses should be left to the diagnosee. I think alot of it is pride...they feel they will be looked at differently..I was like that. I was the "popular" kid and thought I would lose friends or people would make fun of me. I was wrong but the fear existed. 

I guess it all depends on the person. For me, I am 100% glad that I told my friends and anyone else who would listen. I realized that not only is cancer a pain to endure but it also an opportunity to connect with a vast amount of amazing people who have endured similar things. I am so blessed to have met the people that I have connceted with thorugh my cancer. Granted I wish the circumstances were different and we wouldn't have to endure such things, but I guess sometimes you need to experience one extreme to experience the other...if that makes sense. 

My personal opinion...tell. Sometimes sympathy from a stranger or prayers from thousands is enough to make a huge difference. 

Posts: 12
Joined: Jun 2013

This thread came at an opportune time for me!  I was diagnosed with CLL in May 2013, and am still asymptomatic, on "watch and wait."  I've told close family members and a few friends, and that's been enormously helpful in my adjustment to the diagnosis.  I know there's no shame in a cancer diagnosis, but it's so easy to think of it as a deep dark secret.  Particularly since much of my social life revolves around running -- in  fact, I coach in a marathon program.  I'm healthy now, and don't want to be treated like the "cancer girl."  But in a month or so, I'll be going public in a big way:   I've signed on to run a marathon in March through Team in Training, as a fundraiser for the Leukemia and Lymphoma Society.  For years, I've seen people at marathons running for LLS and have cheered them on (they're quite visible with their purple Team in Training shirts).  I should have done this before, but it would seem especially wrong for not to do some fundraising myself, now that I have the CLL diagnosis.  However, this will entail solicitation, on facebook and elsewhere, which will "out" me.  I'm nervous about that!  Still, in the end, I expect I'll feel relieved to not feel like I'm hiding something.  My running friends who know about the diagnosis haven't been weirded out, and we mostly talk about everything else under the sun.  It's helping me get to a new "normal," and accept that I'm still "me":  just a new "me" with a deeper appreciation of how uncertain life can be.  So yes, my opinion is that it's better to tell than to hold it all in.  -- Terri

Posts: 3
Joined: Jul 2014

I'm currently experiencing this with a friend of mine. He told me he has leukemia but noone else knows. Neither his family nor his friends. The reason he told me was that something romantic was about to happen between us just before he found out about leukemia so he wanted to be honest. He says that he doesn't want others to feel sorry for him and he can't stand being asked questions or being treated differently. I don't agree with him. I thinks it's more pressure to pretend and coping with the disease at the same time. I understand being too proud but cancer can't be fought alone. I think one should get all the support he can. And it's totally unfair for the people close to you to keep them in the dark. But it's a personal choice I guess. Everyone is different. Some people withdraw and others want to share with their loved ones. 

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