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Telling Others About My CLL Diagnosis

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Published on October 12, 2020

How Should I Tell My Family and Friends About My CLL Diagnosis?

Chronic lymphocytic leukemia (CLL) accounts for roughly one-third of all leukemias. Once diagnosed, there are many things to consider, and telling your loved ones is likely at the top of the list. Listen in as Host and CLL patient Michelle Nadeem-Baker, joined by CLL patient and advocate Leslie Powell and Robin Katz of the Lurie Cancer Center of Northwestern University, discuss communication tips and advice for telling others about your diagnosis.

They will cover topics including how to prepare for the discussion, how to be upfront and set boundaries, and what their own experiences were. 

This is Part 1 of a 2-part series on CLL. Part 2 coming soon.

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Transcript | Telling Others About My CLL Diagnosis

Do You Have Any Specific Advice on How to Tell Others About My Cll Diagnosis?

Michele Nadeem-Baker: 

I know it's really tough to tell people when you're diagnosed and especially family and friends and how do you do it?  

Robin Katz: 

Yeah, it's hard. I recommend being upfront with them. First of all, find a good setting. And it's a little difficult now because of COVID so a phone call or FaceTime is good if you can't do it in person. And really keep it to the people who are the most important in your life for the first time you disclose your diagnosis. And give them the facts, be honest and open, but also recognize they're going to ask you questions. Figure out how you want to handle the questions as well as being upfront with how you feel. You may not know how to explain how you feel. You could say, "I'm angry, I'm upset. I don't know how I feel," because they're going to take the cues from you as the patient. 

Michele Nadeem-Baker: 

Do you suggest a particular… to do it at the beginning? Leslie, I know you have such a positive attitude. Leslie really shares this in a lovely way. If you can say the diagnosis at all is, but she just really is positive about the way she presents it.  

How Did You Tell Your Family and Friends? 

Leslie Powell: 

Well, I think I was blessed cursed that when I was diagnosed, my best friend from high school was going through breast cancer. I've always had the attitude that compared to what she's dealing with, CLL, and especially with the new treatments now with the oral meds, it's no longer chemo per se. It could be much worse. And I acknowledge that and I'm grateful for that fact. I just told my kids that I had good news and bad news and the bad news was that I had leukemia, but that the good news was that I wasn't going to need treatment for a long time. I would carry my life on and my life would be unchanged for the foreseeable future. And at some point, I was going to need some treatment, but that time wasn't now, and I'd know more information down the road. 

Michele Nadeem-Baker: 

That was much better than what I did. I did not tell my mother. I was afraid it might affect her. I didn't tell my mother for a very long time. I had only told my sister and I was just, yeah, it was really hard because you don't know what to think because you don't understand that CLL there's watch and wait. It's really a difficult time. And I waited, probably waited about 10 hours to tell my husband. 

Robin Katz: 

To be open and honest and also to give boundaries, say, "I'm giving you the information, but I don't really want to talk about it right now. Give me a week, give me two days, whatever it is." 

Addressing the Question of “How Do You Feel?”. 

Michelle Nadeem Baker: 

How do you share when people, when friends ask them how they're feeling? And many of us feel fatigue. It's a very common symptom of both the CLL and the treatments. What do you suggest so that you don't get tired of saying, "I'm tired" or so that people don't get tired of hearing you say, "I'm tired." 

Robin Katz: 

Yeah, so one suggestion I have is I tell patients to say, "I'm venting. I don't want a solution. I just need you to hear fatigue. I'm sleeping a little more because I'm tired. Sometimes it's physical. Sometimes it's emotional." Or, patients may have to reeducate their family and friends. People really care and they mean well, but they also want to help and they give you a lot of unsolicited advice. You might have to set those boundaries, but explaining fatigue is one of the hardest things to explain along with pain. Pain is a very subjective thing to explain as is fatigue. It's something you may have to go over and you may have to say, "I feel foggy. I'm just really tired. I can't get off the couch even when I want to." But telling them you're venting and you don't want a solution is very helpful. 

Can This News Affect Relationships?

Michele Nadeem-Baker: 

And another question and it's something Leslie and I were speaking of earlier, we had some different experiences in this, but sometimes people treat you differently when you tell them about your diagnosis and you don't share for them to do that. I've had a family member who never spoke to me again. I've had friends who just stopped and is this something that is common to happen? 

Robin Katz: 

Yeah, it is. It's very disappointing to say the least for someone, the patient. It's really common. And it's when you're ghosted in a way. The people you expect to show up, you thought were your closest friends and they would be there for you, kind of fall off the face of the earth. And then people you didn't expect to show up maybe were a peripheral friend, they show up and you're surprised. We don't know how they were raised, if they had a family member who was very sick and it scares them or they just don't have the way to articulate how they're feeling so they don't say anything. You don't know what the issue is, but it is upsetting. And I've heard this from many, many patients. 

Michele Nadeem-Baker: 

Leslie, did you experience some of that? 

Leslie Powell: 

Well, yesterday when we spoke, I said, "No, none of my friends disappeared other than my husband at the time." 

Robin Katz: 

Yeah, we hear that. 

Leslie Powell: 

He just checked out and couldn't deal with it, I guess. So, yeah, definitely. I would never have expected that. Shocking. 

Michele Nadeem-Baker: 

Is there any way, instead of this happening with friends, is there any way to strengthen relationships? 

Robin Katz: 

Yeah. A lot of relationships do get stronger. I had a patient tell me she was not very close with her cousin and they became super close and their relationship became really deep and meaningful. It just depends on the other party. But I wouldn't throw the baby out with the bathwater. If that person was really important to you and you're disappointed, if you have the tools to call them and ask them what's going on, it's worth the shot. If you don't get a response that you are comfortable with, at least you tried because there's a history there that you don't want to just get rid of. Maybe that person just needs the door opened because they don't know what to do. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.


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