#RealTalkRA Summit: Pharma, Fun, and Friends

This week, I was invited by Pfizer to attend the 2017 Real Talk Summit in New York City. While they did compensate me for my time and took care of accommodations, I’m going to go ahead and disclaim now that they are NOT paying me for this blog post, and did NOT ask *or* expect me to write it.

But I feel compelled to do so, because it was just such a wonderful experience that I just want to share it with all of you!

I’m sure that in coming weeks and months, I will be continually posting about themes and ideas that were discussed at the Real Talk Summit, so this won’t be a one-off. The topics we discussed, the memories we cultivated, and the information that was gathered will stay with me, and I’m sure will shine through the work that I do moving forward this year and beyond.

After all, it was an experience that will stick with me — one of those events that helps shape your perspective about both your illness and yourself. Real Talk Summit (hashtag: #RealTalkRA, and often cleverly branded as ReAl Talk — see what they did there?) was a gathering of pharma industry professionals and other speakers & experts, along with patients and patient advocates: a true meeting of the minds!

Its purpose was to have real, open, honest dialogue about the lives and aspirations of rheumatoid arthritis patients, and its goal was to address areas where there are gaps or unmet needs. What are we struggling with? What hurdles are we facing? What are unique challenges and unmet needs that we are experiencing as patients? What can Pfizer and other pharmaceutical companies do better? What does the general public need to understand? How are we coping? What are our feelings about our RA? What areas can we do better, and what areas can they do better? How can we make it less of an “us vs. them” situation? What would patients like to see? What questions do we want to ask, and be asked? What do we want the world to know? What do we want our doctors and drug makers to know? How can rheumatologists and patients better communicate with one another? What important dialogue needs to be started when it comes to RA?

These were all questions that were addressed, either directly or indirectly. Topics were broached that are sometimes a little taboo: sex and RA, how RA affects friendships/family/romantic partnerships/career, the idea of chronic pain/chronic illness patients being “lazy,” how RA affects body image, the sometimes-toxic idea of productivity, and so on. We also talked about ways the pharma industry can be more transparent, and there was a lot of discussion about self-love, self-care, and empathy.

It was refreshing that specific treatments and adverse-effect horror stories were not shared; nor was this a woe-is-me, competitive, let’s “one-up” each other kind of atmosphere. If you’re immersed in the patient community as I am, you know that sometimes the environment can become negative at times.

This wasn’t that.

I can’t speak for everyone, but I personally felt very encouraged, uplifted, and supported by my fellow patients, as well as the Pfizer employees and the experts who they brought in to speak to us. It truly felt like a judgement-free zone where we were all open to be honest about our journey and share in the discourse about important RA topics.

While I do wish that there were some topics we could have added to the agenda or expanded upon a little more (adaptive beauty & fashion, more inclusivity and diversity in pharma ads and patient advisory boards, ableism in general, gender bias in healthcare,) what struck me most was how much Pfizer seemed to actually care, and, how open and honest we patients were with one another. I’d spoken with or followed some of these folks online, but had never met any of them in real life. Yet, I felt unashamed and unafraid to share my true thoughts and feelings. I was able to feel both vulnerable and valued, transparent and empowered. I only wish that all RA patients could experience that kind of camaraderie and encouragement, and I think we need to do a better job of bringing that friendly and supportive experience to the online/social media/blogging communities, as well as to doctor/patient and pharma/patient relationships.

I was left wondering how we can translate this into the real world? At the Real Talk Summit, we were isolated in a little bubble, kind of like a “think tank” or an “incubator,” if you will. We got to be free and talk candidly about our lives with rheumatoid arthritis, without fear and judgement and without a competitive nature. We got to offer suggestions and give feedback to “Big Pharma” without worrying about any type of negative ramifications. We all got to be ourselves, and speak our piece.

And something I told my husband afterwards was that I felt like it MATTERED. I felt that I was being not just listened to, but HEARD. I felt like my opinions meant something; I felt valued and respected.

Rheumatoid arthritis and other autoimmune and chronic illnesses can be isolating and can be damaging to our self-esteem. We don’t always feel heard, valued, seen, understood, or respected. We don’t always feel non-judged or de-stigmatized. We don’t always feel free or able to speak our truth about life with illness — a topic that isn’t always pretty, and one that is uncomfortable for so many.

And THAT: that feeling of acceptance and being heard and respected, is invaluable.

Yes, I will always remember the fun memories and the poignant, heartfelt, inspiring, uplifting, encouraging, empowering, HONEST “real talk.” I am also SO glad that I met fellow RA patients who I could celebrate and commiserate with: people who “get it” and TRULY understand what I am going through. As patients, it is rare that we are in a room filled with so many people who can actually relate to us.

But, perhaps the biggest takeaway for me is that sense of feeling valued. The sense that while people on “the other side” can’t necessarily relate physically and may not fully ever understand our experience, that they still cared enough to want to learn about it, and to at least TRY to see things from our perspective: the good, bad, and the ugly.

And here’s the thing: some skeptics might think that “pharma” was trying to “buy” our affinity or loyalty to their brand — but that mindset is both cynical and completely inaccurate. We didn’t even talk treatments, at least not in specific or branded terms. There was no persuading or dissuading or “selling” going on here. And to be fully transparent myself, I have to say that in the past I have, at times, been a little quick to judge “Big Pharma.” There are a lot of myths and misconceptions out there, a lot of ideas about money and greed and the cost of healthcare, conspiracies about hidden cures, and to be honest, sometimes medications and their side effects have been scary to myself and to others.

If I am being honest, one of my biggest — and one of my only! — regrets from the past is going off of a drug (actually one that is made by Pfizer, ironically, but that is neither here nor there,) because of fear and this negative stigma and some myths and misconceptions/misinformation and anxiety that I let dissuade me, even though, for the most part, the medication was working well. I paid the price and have suffered some irreversible consequences.

But that is just an aside to illustrate that I get it, and I know I’m not the only one who has at times dealt with a little bit of pharmacophobia (whether fear of meds or fear of the industry.)

However, in recent years, through my work with Healthline and the Autoimmune Registry, and in my work as a patient advocate and a WEGO Health Patient Expert, I’ve gotten to learn a whole lot more about the industry.

Pulling back that curtain a bit and educating yourself can make a world of difference when it comes to choosing treatments that work for you and eradicating fears and misconceptions. Patients and the public and pharma have a ways to go in order to build trust and awareness, but it isn’t impossible. Perhaps the biggest issue that many patients (and the general public) have with pharma is healthcare costs. Why are medications so costly? What makes them so expensive? And this was something we talked about: it’s a concern that affects all of us, but especially those on Medicaid or patients who are worried about losing healthcare with the constant legislative battles surrounding it. The issue of accessibility and affordability is a big  one.

But I think that the Real Talk Summit allowed me to see that there is a compassionate and human side to the pharmaceutical industry, one that actually cares about and values patients and their experiences and opinions. And I think and hope that it allowed them to see the human side of patients: we are often hurting, we are sometimes frustrated or feeling invisible, but we are still people first: people with hopes, dreams, goals, and wishes.

And we are resilient.

This idea of resiliency crept up a few times, especially when the patients were asked to create their mantra. My mantra was in relation to RA and it was:

“This is just a chapter in my book, but not my whole story.”

That was an activity that was fun, and I think, valuable. This mantra notion is an idea that YOU can put into practice on your own, whether or not you attended the Summit. Come up with a mantra based on an affirmation, a song lyric, a quote, or a memorable compliment that you’ve received.

What would YOUR RA Mantra be?

Another idea you can put into practice: the Fishbowl activity. Dr. Logan Levkoff, a sex and relationships expert, spoke to us about self-love. She also talked some about interpersonal relationships. An idea she presented was to put questions in a fishbowl that you as a patient would want to be asked, or questions you have of a partner. You could do this with a friend, lover, family member, colleagues, or fellow patients, and it would be a great way to get to know one another!

So think about: what questions would you like to be asked?

We talked about other ways to cope healthily, too, from journaling to compiling playlists to suit our moods, to practicing self-care, and pursuing passions and a positive mindset.

Now, while you ruminate on those topics, I’ll leave you with a couple of parting thoughts from a more personal perspective.

Diane Chamberlain, a New York Times Best-Selling Author, came to speak to us on the last day of the Summit. Diane has RA. Her life and my own shared a lot of parallels, from the writing, to a love for dogs, to the “hating to wear our foot braces and ugly RA-friendly footwear.” Listening to her discuss the pursuit of her passion and a positive mindset despite RA really resonated with me: her attitude and interests were so clearly aligned with my own. But what really spoke to me was when I said “I’m an author, too, but nowhere near as established as you,” and she told me NOT to give up, because it took her 28 years to become a best-seller. It also heartened me to know that she wrote at least two books using dictation (talk-to-type) software because of arthritis in her hands. This made me feel SO much better, because, recently, I’ve lamented upon whether or not I’d be considered a “real” author/writer if I was “talking” my stories instead of typing them. Diane has 24 novels published in 20 languages and another book coming out in October 2017. (Note: it is called Stolen Marriage, and it is really good. I just finished it.)

So, I’d say she’s a “real” author, no matter the method she used to craft her stories: typing or talking, RA or not. And that inspired me.

The final thought I would like to leave you with is this:

If you’ve read any of my nonfiction books, or my Lemonade blog post (one of my personal favorites and most popular posts, but also one of my longest,) you’ll know that, as much as I love my work and my life, this isn’t exactly the path I had planned.

If you knew me in middle or high school or college, you’d have known without a doubt that I’d eventually be living in NYC, working at Vogue, living a Carrie Bradshaw/Sex and the City kind of lifestyle, or being a stylist, or songwriter,  or a manager or PR girl for a music artist or fashion designer.

Except it wasn’t without a doubt.

Doubt crept in as I got older, and my body reminded me that I may not be physically able to keep up with a fast-paced full-time job in the “big city,” or the entertainment or fashion industries, due to my health. So I set those dreams aside, realizing that I’d probably never walk the halls of Conde Nast.

Until this week.

The funny full-circle thing that happened is that my illnesses, including RA, kind of prevented me from a job working in music or at, say, Vogue or another Conde Nast publication.

But, RA is also what brought me to NYC for this event … in the World Trade Center … in the Conde Nast wing, inside Convene by Conde Nast, for this Real Talk RA Summit by Pfizer. Pretty ironic if you think about it. It was cool to peek into the Vogue offices when the elevator would stop as we headed up to Convene.

Was I fangirling a bit? Yes. Would I have loved to have hopped off and taken a look around the Vogue offices (before probably being escorted out by security?) Yes. Duh. But was I thrilled to be there nonetheless, even just passing by those floors — just catching a glimpse? Yes.

Yes, because I was there for a purpose. For a cause. For something meaningful that mattered to me, and to others.

My life may have landed me at Conde Nast for reasons other than those I’d planned years ago. But as the saying goes, make plans and God will laugh.

I trust that I’m on the right path and that I can make a difference where I am, with what I have.

What I have is RA. What I also have is my voice, my work, and my writing. So I will stay proactive, productive, and engaged. I’ll practice self-care. I’ll keep current on healthcare trends and stay up on the latest news related to health and rheumatoid arthritis. I’ll keep working on my books, and my blogs,  and my public speaking and media appearances, and my freelance social media and marketing consulting. I’ll try to stay as healthy and as active as I’m able to. I’ll stay attuned to my interests and passions outside of RA: writing, reading, astronomy, animals, birdwatching, music, travel, pop culture, and fashion. I’ll stay focused on volunteerism, charity, and helping others.

And I will treasure every experience where I get to make forward progress on my life with RA, especially experiences like this one, where I get to keep it real in a way that matters.

Thank you to Pfizer for the opportunity to be in the same building as Vogue 😉  … for the opportunity to meet amazing RA patients and other wonderful people … and for the chance to have some Real Talk about an illness that is complex and challenging, much like life itself. Thanks for allowing me and my fellow patients to be valued, and heard. I am very grateful.

Some photos and videos from the event are on my Arthritis Ashley and Ashley Boynes-Shuck Facebook pages and my Instagram, and more will be coming soon, so stay tuned! You can also view other #RealTalkRA “mantras,” here. And just for fun, in coming weeks I will also be taking topics we discussed at the Summit and will bring them to you guys via Blog and FB Live Chat, so stay tuned. I want to be able to stay engaged and continue all of the good work we discussed at Real Talk.

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