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How do you feel when other people downplay blood cancer?

Why do you think they do it? How do you cope with it?

  1. That's been a thorn in my side, too. My friend read one of my articles telling of my life expectancy. She said, " Oh, I didn't know it was that bad!" That's because you don't listen, I thought. I don't have a cold.

    People assume there is a fix for everything. When I explained that I wasn't interested in substituting at my former school because of my diagnosis of blood cancer, one lady I had just met said, "Oh, you'll be fine!"

    How do I cope? I refuse to let someone bully me into something that I am not sure if I have the energy. As much as I enjoy spending time with friends, if I don't feel up to going out, I don't. Even at church, when I am asked to help and I am lacking the stamina, I have said, "Since I helped last time, I thought someone else could help this time."

    1. When people reply with comments like that, I get so frustrated because it’s so insensitive. I wonder 💭 when people mention insensitive comments if they think twice about what came out their mouth.

  2. Thanks for answering. Normally I can just chalk it up to someone being ignorant but it is a sore spot at times after 7 1/2 years of mostly struggling with CML. On another site (which I've just withdrawn from), I was chastised for calling it cancer when it was likened to high blood pressure and scolded and told that everyone responds to the medication within a year and is fine. As politely as possible, I wrote my usual, "not everyone experiences the same," things and that it is great when you have a good outcome but please be aware that everyone does not have the same experience. The back and forth continued on the other person's end, not mine, and I was accused of "fear mongering," and I'd had enough. It's bad enough dealing with people I know who still don't get it, but don't need to get annoyed by strangers. Just wondered if others run into this situation. I learned a long time ago that if I was not up for some outing to just say no--rather than suffer later.

    1. I know you get it. This person said her oncologist said it was like high blood pressure or diabetes and everyone was fine after the year mark. I'm all for trying to be positive but I also like to live in the real world. When I replied that it's great when people have a positive outcome but not everyone does, that's when I was attacked and branded as a fear mongerer and the person kept insisting it was like high blood pressure. I know when to "peace out," of things--not what I was seeking in terms of support just a bunch of bickering online back and forth. CML sucks and I'm not afraid to say it. Going through a bad period with Daniel's "Keep on Keepin' on," in my head.

    2. Decided to remove myself from the group entirely. Too much to deal with without the added stress of what was suppose to be a support group going south.

  3. Honestly I wish there was more compassion and an understanding for what other people are going through. Unfortunately, the world 🌎 is not set up like that😔

    1. Absolutely. We're in the real word here with the good and bad expressed honestly. It's good to know we're not alone in our experience.

    2. Agree. Keep smiling and your cheery outlook, though. I know you have difficult days too but you are a strong person. We'll all get through this.

  4. As said "That's because you don't listen." It drove me insane! I felt like I was fighting to be understood. I would be very vocal about how I was feeling, I knew I had blood cancer again this last time because it felt the same but no one wanted to believe it. That's why validation for me and being able to validate others is so important to me. Because even the people closest to me who meant well didn't understand. Sometimes I feel like they still don't.

    As for coping, I try to distract myself with things that make me happy. No matter how extra they are. If I want to pretend it's Christmas for the day that's what I'm going to do. Also being here helps, everyone here actually gets it and understands. There's a wonderful support system in place here. Therapy also helps, and writing out my feelings can be a good way to get the bad feelings out. It can still be hard at times though, but it's a process.

    Reading all of the comments above, I'm so sorry the things that you guys have experienced. It sucks, I hope from here on out it's smooth sailing. <3

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