Do you Tell Family, Friends & Co Workers about your Cancer?

treehouse5437
Reading your post i wondered if you are at the very start of treatment or have a diagnosis. For me, I only told my good friends, and my immediate family of my siblings. I was not choosing to tell my friends network and ask my trusted friends to not share it. I watched others post on social media the cancer story, the updates, and I felt i did not want a forever timeline of my personal journey and i ask those i told to not post anything. It worked, they did not.
I had breast cancer in 2021 and MDS in 2024. It is my journey. My BC chemo journey was in late 2021. We still were working from home in August of 2021. It was easier to not tell people. I wore cute beanies from headcovers.com, so my zoom look was good.
With MDS and my hair loss, the sadness over losing my long red hair of 40 years was gone. I had hair that just hit my shoulders right before the MDS diagnosis and once my hair fell out, I just went back to the beanie with a rosette. I also realized the need to wear a wig left me. I still worked from home, so right now, my hair has grown as a friend said, to an Annie Lennox style. By the time i go back to work with very short hair, no one will have seen me with the long hair in over 5 years. The last time they saw me in 2023 i had near shoulder but i wore collections of hats. I still have those hats too and will start them again in April when i go back to work.
Keep your Hope alive and know a day at a time it will unfold how you wish to live and share this journey.

Just diagnosed & had 1st treatment- thank you for your kind words... one day at a time... hugs! 😊

From a New York Times advice column this winter -- advice that I wish I'd had when I was first diagnosed:

My advice is that you keep your condition to yourself unless someone asks you directly, in which case you may want to share more detailed information. I don’t say this because I believe that a cancer diagnosis is something to be ashamed of (nor are the side effects of chemotherapy).

And I don’t say this because I’m dismissive of your discomfort. I say this because I believe that you run the risk of feeling even more awkwardness and discomfort by explaining your cancer diagnosis.

Because though people may understand the broad outlines of what is going on, their reactions to this information, or lack thereof, may disappoint you in ways that you can’t even imagine. What if your disclosure is met with uncomfortable silence? What if someone communicates sympathy in a way that feels inauthentic? You may feel even more awkward and unsure of yourself, which is the last thing you need.

My MGUS is ramping up enough that a some point it might morph to MM. Along with hubby, I tell my sister about my health issues since some are genetic, but not with other people unless it becomes obvious. I learned after my celiac disease diagnosis 15 years ago that it is better to share only with trusted friends/family. I have to avoid all gluten, including asking servers at restaurants if food is celiac safe. If not, then I don't eat there. After the first few months of that my best friend said "you don't have celiac, you have some gluten intolerance and mostly stresses, and you need to stop getting on peoples' nerves." I call celiac a vocally transmitted social disease. It is better to be treated as yourself than to be seen as less.

I'm confused about who to tell, to be honest. I did tell my daughter and brother. I told a few friends a lite version of what is going on only to hear: "you look fine." Huh? What does that have to do with anything?

I feel I have to tell some people. I have a group of friends from elementary school, and we have a yearly girls' weekend each year. Those weekends are filled with one activity after another, and I can't keep up anymore. So I had to tell them something. Now they are going to visit me this summer, which I have mixed feelings about. I really like them, so I'm glad to spend some time with them, and this may be the last time I can do this. But I'm also stressed about what we are going to do.

Oh and @kayabbott I found out 20+ years ago I had Celiac and for the most part everyone knows only because I do go out with them or over to their homes for dinner and I'm not willing to get sick!

I am 79 with ET JAK2+ diagnosed in the fall of 2024 after a serious bout of multiple pulmonary embolisms in the summer. I too have chosen not to broadcast my journey. I'm very carefully guarding what goes into my ears, as this is a faith journey as well as a medical journey for me. What goes into my ears impacts my thoughts and then my feelings and I most definitely don't want to fall into the sympathy pit. It becomes addictive in the worst possible way. I need positive energy in order to carry out the purposes put before me to accomplish. I take my HU and go about my business. My first oncologist said "live your life." And while I eventually changed docs, I have hung onto to those words. Thank you for sharing your journey to date!

I would probably look for online groups, similar to this Mayo forum, with which to talk with others. If you have trusted friends/family to talk with about what to share, that is an option. If your doctor's office has a group therapy/discussion option that can be useful. I had a moderate TBI (traumatic brain injury) 31 years ago and joined a similarly-dented group for several sessions (the closest I've come to "One flies over the cuckoo's nest" because we were all stuck). Regarding celiac, I still travel and do stuff with friends, but bring my own food it isn't otherwise safe.

@treehouse5437 There have been some really nice comments here, something we can all relate to. I think you will find you do what makes you feel most comfortable.

In my experience, I am not the same person as 10 years ago. There is markedly less energy and less physical ability. But the "want to" is still there. So, I do what I can, the best I can. For me, telling others about my health situation is as much giving information as it is showing them that we can still contribute to our society and lives. That any diagnosis can be a fence to get over, not a wall limiting us. Some people reach out to protect me, others have no clue and stand back. Disclosing my health concerns to my siblings opened doors of communication.
Ginger

"Live your life" is difficult when first diagnosed. I've just started short term disability- seems like Groundhog Day on repeat after working full time for decades. I do get tired and rest- also, have appt days two/three days a week with bloodwork & treatment.

😊

When one is hit upside the head with illnesses and uncertainties, there is a grieving process. For me, it feels a bit like losing part of oneself and being isolated and unsure. I try to escape into books and interests as much as I can. At night, I think of or set up something to look forward to the next day. It helps me sleep. Meditation can help, especially mini meditations while waiting or during infusions.