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It’s okay to not be okay – The gift of patients understanding each other | ChroniCarly

Before the internet, my favorite part of being a patient was interacting with other patients in the hallways of CCFA education presentation events. More than hearing about the latest medical innovation from the nation’s top doctors, more than sessions on IBD in women, more than the (often terrible) free food buffets, interacting with other patients was what kept me coming back to these events.

Eventually the events became less frequent, as CCFA became more nationalized and funding changed. I found other ways to get my “fix” of patient interaction. I attended a Lupus conference 5 hours away, even though I do not have Lupus.

Last year, I was able to attend Stanford Medicine X 2012 as an epatient scholar. I got to sit feet away from personal heroes and Stanford genius big shots. The best part? The part that makes my soul physically hurt as I sit at home and follow along with the 2013 conference virtually? The best part was the interaction with other patients, being able to look someone in the eye and know they understand a fundamental part of my story that so few people do.

This is so critical. I believe it is necessary to recalibrate our sense of self as patients. ChronicCurve’s (aka Emily Bradley) comment above hits home. Being with other people with chronic illness allows me the essential chance to shrug off the mask of “healthy” I struggle to wear 24/7 in my life. It becomes confusing to know which is the real ME. It becomes physically exhausting to do tricks to look healthy – hair and makeup, uncomfortable wardrobe. All this on top of fighting illness and symptoms!

The question was asked, what can the epatients do that physicians cannot? They can fundamentally understand.

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4 Responses to It’s okay to not be okay – The gift of patients understanding each other

  1. Boy, you are fast at getting this blog post out live even as the Medicine X patient panel is speaking! Such an important message, Carly, to be able to – “to shrug off the mask of ‘healthy’ I struggle to wear 24/7 in my life”.

    So true…

  2. Catherine says:

    So absolutely true – they can understand. I had an experience of this the other day when life was simply too overwhelming with an upcoming oncology appointment. I dropped a random comment into the online community and was answered back that those feelings were okay, and others shared them too. That in itself was so powerful, and it was patient-to-patient support.

    • Carly says:

      Thanks for your comment, Catherine! I love online communities, too. They are especially great when your health makes it difficult to get out of the house (or the bed) some days.