People spin a lack of acceptance in many different ways but the bottom line is, if you’ve put yourself out there and were not accepted, you feel and, have indeed been, rejected.
I recently received my rejection letter from the Medicine X 2014ePatient scholar program and it bummed me out even as I tried to rationalize the realities:
- It’s not personal;
- Only so many people can be accepted;
- A gazbillion empowered, educated breast cancer patient voices already exist
the back of my head still screamed:
- My words were not compelling enough;
- I pared the wrong things out of my narrative;
- My place in the healthcare community isn’t strong enough to benefit the masses;
- I should have focused not on my breast cancer but on my gluten issues or my allergic nature that leaves me without a proper cache of antibiotic treatments;
- [more thoughts of self-doubt and second guessing]
And then it began to all come together over a cup of coffee.
I don’t need to be physically in attendance at Stanford Medicine X 2014 to tell my story and make an impact.
And neither do you.
There are members of health care and the scientific community that are already listening closely over social media. Simply join an #hcldr or #lcsm tweetchat to see what I'm talking about. There are a myriad of organizations collecting patient voices to try and lend a face to disease and chronic conditions. Check out Patients Like Me, Cancer Commons and Army of Women for a glimpse. There are individuals who have invested their careers in modifying and evolving health care to meet the needs of the individual. Follow Lisa (@PracticalWisdom) and Andy (@CancerGeek) to participate in the movement.
If you applied to the MedX ePatient program, you have alredy demonstrated that you are an empowered & educated patient. If you want to change the status quo, it is absolutely within reach. Let’s keep working together and let’s help amplify the collective patient and caregiver voices by encouraging other conferences to do what Stanford Medicine X began and has set the gold standard for - patient inclusion.
And I know it can be done.
In the Fall of 2013, after discovering the wonder of #MedX over Twitter, I was curious to find other conferences who were as open and inviting to patients. I began an online hunt for events in my area and found Personalized Medicine World Conference 2014.
I examined the proposed program and, over Twitter, asked the organizer where could I find the ‘personal’ part of the conference including patient representation. I was told that the conference was ‘personalized based genomics’, intended for a non-patient audience and encouraged to take my thoughts into conversation with her by email.
We began a courteous exchange that, over the course of many iterations and the conference organizers’ willingness to reach out to local patient groups, ultimately led to an entire patient and advocate track co-sponsored and expertly moderated by Cancer Commons.
Track 4 was a first for PMWC and a first for me.
As patients, as caregivers, as advocates for a better healthcare system, we can facilitate the Medicine X model of patient-inclusion as the standard protocol for healthcare conferences.
Find conferences and events in your area, reach out to the organizers directly or reach out through established patient-centric organizations. Ask about patient representation. Ask about patient scholarships. Get yourself invited to the party. Better yet, work your way onto the agenda and directly into the conversation.
Believe me, you have so much to learn at an event such as this and so much to offer.
In fact, when I review the individuals who have been already accepted, I am honestly overjoyed at the attention lesser known conditions will begin to receive with MedX14 as the catalyst. I am delighted that others will experience first-hand what I was just able to experience at the Personalized Medicine World Conference 2014 last week. I met genetic oncologists, researchers, genetic luminaries and other patients like me. I asked questions, answered questions, was asked to share my story and felt extremely valued as a participant in the conference.
Together, let's make this happen on a broader scale.
Come September, know that while I won't be at the conference, I will be eagerly and closely following #MedX14 tweets and, in the meantime, I will use rejection as a catalyst to deepen the conversation and broaden opportunities for all of us.
You rock for working through this so quickly and articulating it so clearly.ReplyDelete
FWIW, I've spent years attending conferences and workshops and meetings via Twitter (and other digital technologies) because I couldn't physically travel. As a result, in the 6+ years I've been on Twitter, my world has opened up in amazing ways. You're 200% right -- many many ways to participate, being onsite is only one.
Thank you for reading Meredith.Delete
Yes, so many ways to not only participate but to truly transform the status quo.
And I am definitely feeling empowered.
All the best,
You're so right. I really admire you your persistence in successfully championing patient inclusion in the Personalized Medicine World Conference. A friend has been managing to do something similar in other conferences in Canada. And as a patient I have live tweeted some online conferences much to the surprise of the organizers.ReplyDelete
We need an army of patients working on the cause the way you did.
MedX will be the first conference where I will have an active part. The only other one I attended I wasn't even a token patient - I was a tagalong guest. Even that was a great learning experience
I told my rheumatologist that I wanted to go to a conference. He said that of course I could go but what he had not understood was that I meant the ACR meeting.
Annette, I am DELIGHTED you are attending and, like I mentioned, hope that we can meet up when you're here even if not at the conference.Delete
This will be a fantastic experience for you personally but will no doubt benefit the entire community you so wonderfully represent. (My BIL newly dx w/ RA, definitely interested in more resources for him)
All the best,
Now this is why we write! Or at least this is why we should be writing. To share our vulnerability and our humanity so that others can feel less alone in theirs. Marie @JBBCReplyDelete
Marie, with your first sentence, I did a fist pump (no really!). YES, this is why we write. It has been so good for me in so many ways and I am all the more delighted when other find value in my sharing.Delete
All the best,
Oh my goodness! This is just the thing I needed to read this morning. I'm a Medicine X reject too...but I'm really amazed and interested in PMWC next year.ReplyDelete
As someone who advocates for the BRCA community, I am so happy an excited that you made an impact on PMWC...I just wrote a long post about the need for a BRCA commons!!!
*hug* Love that I could provide just what you needed. Has made my whole week. You are doing amazing things already - let's do amazing things together!Delete
All the best,
There are many ways to make a difference and have an impact. You are doing a lot from right here on your blog. Of course, rejection always hurts, but we can all advocate from where ever we are because every voice matters. Period.ReplyDelete
Thank you Nancy. Indeed there are many ways to make an impact and my goal is to mobilize a community ready to take action looking for ways to make it happen.Delete
Rejection hurts briefly but has no power. The power comes from standing up and making the difference you want to make regardless of what's in your way.
All the best,