r/pediatriccancer • u/AvaaMuch • Apr 21 '26
Does anyone else feel disconnected?
hey
i’m a pediatric cancer survivor, diagnosed at 7 now I’m 17, so it’s kind of always just been part of my life
and i don’t know if this is just me, but as i’ve gotten older i feel like it’s actually gotten harder to relate to people outside of the cancer community. like you can explain things, but it doesn’t really land the same as talking to someone who just gets it
do you guys feel like that too?
what’s helped you with that, if anything?
and what do you wish existed for people our age going through this that you haven’t really found yet
2
u/rst012345 Apr 22 '26
As a parent, I can totally get this. Nobody understands the treatment, weekly hospital visits, rushing to the hospital over a 38° fever, etc. Explain it thoroughly, they seem to understand but they don't, or a week later forget.
The utter disbelief when my child comes running and laughing, and they cant believe how good she looks and start asking about treatment being over, and i have to yet again say that no, she is still receiving chemo daily. And the "but how, she looks good"
Ive really learned to pick and choose what's important for them to know, and accept that I can have a relationship without them understanding of over half my life. I have segregated my life a little to be able to maintain other relationships. It's hard, but for me it's similar to in high school where I had my dance friends, band friends, math class friends and best friends. They were separated circles for the most part and each surved a purpose in my life.
Youth groups are great for different purposes. You could find a great group of pediatric survivors who can relate, but maybe find another group that shares similar interests outside of treatment (books?video games? art? sports?) And give a chance to bond over a passion of yours?
1
u/agrimmfae 19d ago
As a fellow pediatric survivor (I had my first cancer when I in middle school and my second at the end of high school, I'm in my early 20s now) it can be difficult to talk with others who have not had this experience. Like you said, cancer has always just been a part of our lives, it's just a thing that happened to us when we were kids. I know as I got older I began to really understand what cancer meant to other people who have not been through that experience, the weight that cancer holds in the world. For me the disconnect happens between the weight that other's put on cancer and the neutral lenses I try to see it in. It's also hard because when everyone else can just swap stories about when they were kids we have to add this extra "by the way I had cancer so a lot of my stories are going to start with 'when I was in the hospital' or similar" which can feel awkward. I definitely encourage you to talk to other survivors your age but also don't be afraid to make outside of this community like you said explaining things is never going to land the same as with those who have been through it and that good. It's good to have a variety of friends with varying experiences and even with that most people have shit that they have been through so you probably have more in-common with non-cancer survivors than you think. IDK where I am going with all this but I just wanted to say I get where you are coming from and sympathize. Also I'd recommend finding yourself an individual therapist to talk you if you don't have one. Therapy has helped me work through these feelings in the past few years and I wish I had started sooner. Feel free to dm me if you want to talk more :)
1
u/Temporary_Visit4170 22h ago
Hi!! 19 year old pediatric cancer survivor here (diagnosed at age 4)! I completely feel you on this, it’s so hard to have to explain over and over without feeling like anyone actually gets it!! I would recommend looking for resources to increase community! Camp Māk a Dream in Montana is amazing, and the Ruth Cheatham Foundation offers great scholarships and community!! Hope this helps!
2
u/DefenderOfSquirrels Apr 21 '26
I am not a cancer survivor, but I have two thoughts to share.
One, some pediatric cancer treatment centers have an AYA (adolescent and young adult) program. Often times this includes survivors of childhood cancer, as well as teens and young people who are currently in treatment. But it’s a way for a unique group of people who have gone through, or are going through, the same thing to find support and community. Often times, these programs also offer support in transitioning care to adult-oriented providers (eg from Pediatric Oncology to Medical Oncology) and empowering patients to talk to their providers about tests that long-term survivors should be getting (hearing tests, heart function tests, etc).
Second thought: anyone who goes through a life-changing, possibly traumatic, event often has time connecting with others who have not gone through similar. A common group where this happens are veterans (my husband is a veteran). In his words: “you just see some sh-t that people aren’t really supposed to see, and you can’t un see it, and you can’t unlive it”. I think that sums it up.
I would urge you to find an AYA program and/or online support groups. :)