Who to tell?

@gigipatula: I totally get where you're coming from; I've been surprised - and hurt - by some of the responses I've gotten to my Stage 4 cancer diagnosis along the way of treatment and assorted illnesses, even a couple of remarks from a psychologist friend I really expected more from. I had to tell her that I felt she was projecting by saying that might be the way she would feel in the circumstances but it's not the way I'm feeling. I've since learned not to share so many details with her. Not everyone is capable of the support we find helpful.

I've found that when we're facing something as vulnerable as a serious illness, the responses we receive from others can stay with us for a very long time. It makes sense to protect ourselves from being hurt again. Basically, we don't owe anyone all the details of our medical information. If keeping this health challenge private feels like the healthiest choice for you right now, that's a valid boundary.

As for the part of you that wants to say, "Oops...did I forget to tell you?"—I understand that impulse. Hurt often wants to be witnessed. But I'm wondering if that "slap back" response brings the healing we hope it will as it may feel satisfying for a moment, but might lead to more pain and poor communication.

Sometimes a direct and honest approach can work best: "When I was going through breast cancer, I didn't feel supported. Some of the responses I received were painful, and it made me reluctant to share difficult news again." That way you're giving them an opportunity to understand your experience and hopefully respond differently this time. If they proceed with unhelpful advice, try gently telling them that while you appreciate they're trying to help but what you need most isn't advice/stories about other people's experiences/how they would handle it if it was them - but. someone to listen, acknowledge that this is hard, simply be present with you.

Despite those few individuals, do you still have some close to you with whom you feel comfortable to confide? No one should have to walk a difficult medical journey alone.

Family members and superficial friends can certainly let us down with emotional support. I’ve had many serious health issues and 26 surgeries throughout my 70 years, and as a result I frequently get the “what, another problem?” response. I don’t believe that people intend to be unfeeling, but they can be nonetheless. I’m picky about who I share health information with. Only family members that I know will be supportive, and a very few friends who have demonstrated over the years that they won’t be judgmental. I even had a friend suggest that I liked having health procedures or was a hypochondriac. I pointed out that doctors get proof of a health issue by doing tests to verify the diagnosis, they don’t just take your word for it. I think you need to go to people who will support you through health issues, as you have been doing, but with family members (those who are close relatives) I send a text and leave it up to them to respond. Many just respond with a “I’ll be praying for you “, which is fine - they can’t say that I didn’t let them know.

Shorter response, I read the others. It's your business, not theirs. You don't share your bowel regularity, so why this? It's personal to you.
We never share our health info. It's never worked out well. How well can anyone handle someone else's bad news?
No passive aggression here. Scar? Removed fatty tumor. Sick? Long Covid. You owe nobody nuthin'.

gigpatula, I had some funny experiences in this vein. I don't know if any of it will resonate with you. I didn't tell about my cancer. At first I didn't want to worry anyone until I knew the extent of the disease. But during that time I discovered that I wouldn't be able to bear the fuss. I had extra medical attention when personnel discovered that I was alone. I was strongly "encouraged" to tell family and friends, so that I wouldn't be alone.
I had the opportunity to watch the behavior of the family and friends of others in my position--telling them when and what to eat, when to sleep, the constant vigilance of well meaning people. One fellow traveler would hide among large decorative stones at the cancer center just to have a few moments of peace.
In the group therapy sessions I found out that no one can ever say the right thing to a cancer patient.
I got into the practice of translating all these manipulations into the one thing that is probably true. They care.
The woman who had to wear a headcage for her treatments wanted to smash the cage, but her husband wanted to save it for his photography projects. And she was one of his projects--"the worse I look, the better the photo," she confided. She did not want to ring the bell. She wept and swung angrily at the bell, while everyone cheered.
Then her group all set off for celebratory dinner. She just begging to go home.
You won't get all the unimaginable advice available. And, some found it unseemly that I suddenly went on vacation for an entire month and a half.
But, I ran on the beach everyday, ate whatever I wanted-- whenever I wanted, danced most weekends, had massages, saw chiropractors, saw a play. Even staged a few rescues for my friend with the headcage. I met so many unforgettable characters. I recommend the experience of not telling.

I found trying to say to someone that a comment was hurtful usually backfires. The people who are truly callous, maybe a bit self involved, usually lash back with a “how dare you” attitude. The ones that just didn’t think through what they said before saying it, often get offended and then you’re trying to soothe their hurt.

After breast cancer, and a surprising array of comments including, “they’re different sizes” I adopted Mel Robbins “Let Them” attitude. Let them say what they will - it reflects about who they are and not about me. I learned more about family and friends. It was like WoW you just told me who you are and it isn’t very nice. In a way, I was thankful that I now knew something more about that person. Let them say it, and dismiss them - you are in control.

Yes, I understand.
I was sickly since the day I was born. Literally. I had every childhood illnesses that was going on in the 1950’s.
My parents got frustrated and as I got older, I was really tired of being sick.

Now that I’m a lot older (76), I am having a very hard time with rare, unusual diseases that nobody else understands.
Ten years ago I was diagnosed with a rare disease that is 3 in a million.
They had no clue how I was feeling and when I shared, and tried to explain I felt like I was talking to the wall.

Now it’s another different disorder. This is a visual thing. I have a neurological disorder. It makes me fall, shake, hand tremors, double vision…
I told a family member that I almost fell in a restaurant restroom. Her response was, did you? Then let’s go.
No concern or empathy.

I end up talking about my aches and pains because that’s a good part of my day.

My children almost never inquire about how I’m doing. One said “if I don’t hear anything, I guess you’re alright”. That was after surgery.

Oh well, I have to concentrate on me. I can’t waste my energy on anyone else’s thoughts. I certainly can’t change anyone.

So, here I sit watching the birds in my yard, all alone. That’s a perfect way to spend my day.

There's a difference between Secret and Private.

I am sooo tired of trying to explain how I feel to people.. told my sister-in=law I was about to faint and needed to get off the computer (we were messaging) she said "wait a minute I want to send you a pic of my new stove"..so I waited.. gee whiz.. and they just don't understand ..and they are all too busy to care.. sometimes I hint at them and deleted the facebook messages ..all of them.. then they're like "why 'd you do that?'' I'm sick of trying to elicit a sympathetic response ..or even a simple I'll pray for you" ..or a grunt from most.. I have one niece who is so awesome.. she's been sickly all her life..I take it to Jesus..He is always there and He understands and He cares!! Some people..once I told my sister.. good thing you weren't a counselor, all you clients would have slit their throats..people.. they can actually make you feel worse.. I will pray for you..to Jesus who cares and is also the Healer!!

standinginfaith, sometimes people care enough, they just don't know enough.

@gently perhaps.. but after I've told them and been to ER 30 times ..2 in an ambulance..once with a blood pressure of 60 0ver 40.. looks like they'd get a hint after 6 1/ 2 years.. and I moved to Oklahoma and after 36 years out here.. my younger sister (about 60 then).. decided to visit me..she and hubby were on a "road trip".. I said I am so sorry I am soo sick and in so much pain I can't open the gate.. they came anyway and left and messaged me how cute my 2 yard dogs were..and what they ate afterwards..Hmmm..everyone out here said perhaps were sizing up what she would inherit as I have no children..last year her husband passed (i lost 2 one 30 years ago and one 15) and she said just TOD the property to your boyfriend..(yes I have one..I'm 72..) ..and basically don't bother me..I won't come out there for your funeral..I'll pick up all the genealogy later..much later.. (years of my and my Aunt Peggys' work)..ok..I think she knew enough.. as I sit here completely hived up from IDK what I ate wrong again waiting on getting a Xolair shot..so perhaps you're right.. I don't know how anyone could have missed it..I dropped from 140 to 98 lbs..sorry for the rash response.. ..I know too much.. unfortunately..if I had a dime for every time someone sluffed me off ..when I tried to talk to them,I'd be rich... therefore I give it to Jesus .. HIs burden is light.. and just talk "happy" to everyone.. 🙂 have a wonderful day!!