Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLeukemiaTeam Member asked a question 💭
San Francisco, CA

I have not told my family about my CLL diagnosis and I am not sure I need to, what have others done and how/when did you decide to tell them
If you decided to tell them how much did you share, if you didn't tell them how did you come to that decison
I am only in the very beginning stages of CLL and I don't want cause alarm or worry them and I don't want attention either because I don't need it and it may be years before I need treatment. My thought is, why worry my family now? I am let them… read more

May 8, 2023
 · 
Reactions

Answer Summary

Members shared a wide range of approaches to telling family about a CLL diagnosis, from being fully open right away to waiting until more... Read more

Members shared a wide range of approaches to telling family about a CLL diagnosis, from being fully open right away to waiting until more information was available. Several members described how framing CLL as slow-growing and treatable helped ease family worry, while others found comfort in building a large support network through friends, church, and community. A recurring theme was the value of honesty balanced with reassurance, with many reflecting that if the roles were reversed, they would want to know.

A MyLeukemiaTeam Member

Hmmm ... I see your dilemma. My situation was very different. I was very advanced in my CLL when diagnosed. I had already outlived my family. I was supposed to die within a month or two. So I called up all my friends and gave everything I owned away except for my TV, computer, car, cat, and mattress I slept on. The mattress was on the floor by the way. Then life played it's funny little trick. I lived. ROFL! I started going to thrift stores to regroup. 😊 I was happy that I'd given to everyone the things I wanted them to have. But I was straightforward about the cancer. That's been years ago now, and I'm currently in remission. With a house full of thrift store artifacts. 😂

May 8, 2023
A MyLeukemiaTeam Member

I was transparent with everyone in my family, I also gave them the truth exactly what I knew about CLL and encouraged them if they wanted to seek their own information. I tried not to be over dramatic about the "C" word. Assure them it's not the end it is slow growing, and there are lots of treatment options. Hope that helps.

May 8, 2023
A MyLeukemiaTeam Member

I was diagnosed in Sept 2023. I came right out and told family but buffered it with the fact CLL is generally slow growing. I have told friends, neighbors, people in our church. For me I find it comforting having a large support group.

November 4, 2023
A MyLeukemiaTeam Member

I just came right out and told them, I was more worried about my kids since They have already lost their Mother in 2020, But They are ok since I told them I am ok

May 23, 2023
A MyLeukemiaTeam Member

It is very different for everyone, isn't it. Those of us with Acute forms have no choice really. I went in hospital by ambulance so kind of hard not to tell anyone. I know I felt almost guilty being so sick and putting the family thru that. They were told I would not make it at one point. Now that I am post 3 years they have settled down, are still somewhat protective and if a hint of a sniffle, will not come to visit which I appreciate. Some families want to know everything and some individuals cope by not knowing too much and just sticking with hope. So giving information at a level that you have some idea how your family members will cope and talking individually to each one, may in some circumstances give you some control over the narrative. Example a very elderly family member you want to reassure them you will be there for them, that you will do what is recommended to keep yourself as healthy as possible and that if you do end up in hospital, you will arrange for someone else to look after them. Reassuring others often goes a long way, even if we are not so reassured ourselves!

May 8, 2023

Related Questions

View All
Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In