June 12, 2009

Widening Your Cozy Cancer Community?

Being a freak in the dating world, wondering how long our futures will last, wresting with fertility, interrupting our work lives, our school lives.  Young adult cancer patients aren’t the only ones who get to lay claim to this nasty package of dilemmas.

I get incredible emails from patients who have read this blog and my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s. These emails are not just from cancer patients but people who are living with cystic fibrosis, endometriosis, multiple sclerosis, diabetes. Our diseases are so different, but the similarities of our lives are astounding.

Yesterday, on the New York Times Well Blog, Tara Parker Pope had an incredible slide show called Voices of Cystic Fibrosis. Check it out. It reminded me how much I can learn by expanding beyond the little shell of the cancer community.

There are other people out there our own age who get what it means to be a virgin because nobody wants to sleep with the sick girl, or who understand all too well how to tactfully enlighten employers about the Americans with Disabilities Act.

It makes me wonder if we limit ourselves too much by hanging out in the comfy cancer world. A lot of young cancer patients live in small towns where there are no cancer happy hours. So what if you go have a beer with the guy at school who has diabetes? A lot of us are struggling with health insurance or medical debt. So would young adults have more political power to advocate for change if we hooked up with other disease advocacy groups?

Do you read this blog and have a disease that is not cancer?  If you are a cancer patient, have you connected with other young adults who have different diseases?  What was it like?  What do you think about opening up happy hours, support groups, radio shows, and other young adult programming to people who are survivors of diseases other than cancer? Or, am I getting too kumbaya? (I have obsessively been watching the I’d like to buy the world a coke commercial lately).

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Comment(s)

  1. Kelly Kane Says:
    June 12th, 2009 at 12:53 PM

    I say open it up! We’re all struggling with the same concerns (money, health, relationships, isolation, etc) for the most part we’re very similar.

    XO


  2. Wendy Says:
    June 12th, 2009 at 1:03 PM

    Hi Kairol, I think there is definitely common ground to open up some social events and networking opps, etc., especially for young adult health ins, but I also think that there are many times when we need to specifically gather as a community of cancer survivors bc the disease has so many unique qualities, like the fact that you can get a completely clean bill of health and still end up facing death a few years later. That only happens with cancer (and sometimes AIDS). If camp mak a dream had been a bunch of people with all different illnesses we wouldn’t all have connected nearly the way we did. We all had diff lifestyles, upbringings, parentage, ideals, etc, etc, but the ONLY thing that brought together and gave that instant connection was not bc we were sick but bc at one point in our lives we had all beat cancer (i.e., the combo of chemo, nausea, IF, mortality, exhaustion, late effects-the combo of all those and other effects seems specific to cancer).
    but, like i said, there are opps when it is appropriate.


  3. laurie edwards Says:
    June 12th, 2009 at 1:19 PM

    I LOVE this post, as you knew I would. As someone with many different illnesses, I’ve always really believed that the universals of living with illness far outweigh specific symptom differences. We all suffer losses, get frustrated, have to disclose in vulnerable situations, etc. I suppose that’s why I enjoyed your book so much! :)


  4. Jen Says:
    June 12th, 2009 at 11:16 PM

    Wendy makes a great point that there’s overlap sometimes but not always between people with different experiences past and possible. I know that dealing with endometriosis has changed my life in ways that my friends who fight cancer relate to more than anyone else. (Mostly what has changed is how I deal with other people!) I think the most important thing we can do is open up conversation in forums like blogs and just in talking with the people in our lives, in all states of sickness and health. I find great power in hearing others’ stories. But no, I don’t want to get in the way of anybody telling the stories and making the connections they need to make. — BUT when it comes to POLITICS, yes, unite unite! We are not “special interest groups”; we are humans who want the same basic things!


  5. Tara Says:
    June 13th, 2009 at 11:07 PM

    Although I see how “cancer only” groups, etc can be helpful in regards to certain things, I do think communicating with young adults hit by other debilitating health issues can prove to be an unexpected resource and may also help with advocacy,good point.

    I’ve been suffering from various health issues for 14yrs now, since 16, and 8mo ago got cancer, the cherry on top, and have been completely debilitated since then. A friend of a friend, who has spinal issues, reached out to me after my diagnosis for support. And you do experience very similar social, emotional, financial, etc issues. And actually I find it better sometimes to communicate with someone who “gets it”, but who’s specific physical issues aren’t as “close to home” as my own. Although we both might be just as debiliated, and this might sound horrible, but, I don’t have to worry about developing her physical issues and she doesn’t have to worry about developing mine, at least not at this point.

    For me, and maybe cause I’m kind of new to the cancer thing, but I really get freaked out sometimes from the cancer forums and stuff. I walk away the opposite of supported but rather feeling anxious, after reading about all the other awful things that can be yet to come. Or the opposite, I read about people with the same diagnosis who are doing so much better than me and have so much more support, and then I think , “Crap, what’s wrong with me, and how am I supposed to handle this?”

    To Kairol, on a final note, and sorry I know this is already too long, but I have to just thank you so much for writing your book. At a time when I was ready to kind of give up on or at least temporarily walk away from the online young adult groups, cause I just wasn’t feeling better from them, and when the SW I talk to was just not getting it, I read your book and finally felt that, “Yes, exactly!” kind of feeling. So many of the exact things I’ve said or thought were in that book, it was kind of freaky. From the issues with the doctors, them saying they’ve never seen anyone react like that, to the whole “superhero” stereotype..(I remember telling my friend when I was just diagnosed, I feel like I’m supposed to be this amazing superhero, but what if I’m not amazing? what if i’m not a superhero?)… and many many more things.
    So thank you again, I finally felt some support and didn’t walk away with that freaked out feeling, even though I was reading about intense situations. I’m going to recommend your book to the oncology social workers I work with. I think it’d be great for them, as well as friends, coworkers, etc, to read it cause it would help them get things and know how to respond better.


  6. marielle Says:
    June 15th, 2009 at 2:57 PM

    Thank you for your link to the ADA info. This is such a gem of info that I can use with my employer. I didn’t know that I could be considered as having a disability since my cancer is in remission, and I still need to go get tests very often. YOU ROCK Kairol!!!!


  7. Kairol Rosenthal Says:
    June 15th, 2009 at 6:04 PM

    You are so welcome Marielle. I don’t know if you have read my book Everything Changes, but it is full of these simple bits of info that can make a HUGE difference in our lives. When I got cancer I was hell bent on learning about legal resources and my rights. I wanted to write Everything Changes because the services and benefits available to me were too good not to share with others. Here’s to getting empowered with our employers!


  8. Kairol Rosenthal Says:
    June 15th, 2009 at 6:10 PM

    Tara, You make a fantastic point about the benefits of talking to people who have different diseases. It is true, it can be a relief to not fear someone else’s same experience of your disease. Matthew Zachary and I are doing a Stupid Cancer Show in a few weeks about other young adult diseases and I’ll be sure to raise this point on the show.


  9. Patients for a moment: First-Ever Edition « DUNCAN CROSS Says:
    June 17th, 2009 at 4:24 AM

    [...] survivors can learn anything from other young adults with illness; her post is titled, “Widening Your Cozy Cancer Community?” Short answer: [...]


  10. anonymous Says:
    September 1st, 2009 at 8:25 AM

    My husband, in his early thirties, is on dialysis due to a rare kidney disease. As his wife, I find it difficult to be a “young adult” dealing with chronic illness. Most of the resources out there seem to be for older people, making me feel that much more isolated. I appreciate your blog because it brings up issues that I think impact people dealing with all sorts of chronic illnesses — not just cancer.


  11. Musings at the One-Year Mark | Laurie Edwards Says:
    October 9th, 2012 at 8:51 AM

    [...] Rosenthal recently wrote a great piece on the young adult cancer community, where she wondered if staying too close in the “safe” world of like patients meant missing out [...]

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