Posted by Alex Jofriet on November 01, 2016
Have you ever been so annoyed by people you just want either to slap them or crawl under a rock and hide from them? It could be because they don’t know when to stop talking, or they constantly complain about such petty things. Sometimes you find yourself wondering how the heck they got this way! I have been mulling this over a lot lately because, no matter how annoying people can be, I also know that each individual was made unique for a specific purpose. Hear me out…
My sister, an amazing person inside and out, recently showed me an episode of Grey’s Anatomy…I know some of you are probably rolling your eyes (believe me, I am too) but others are probably like S.C.O.R.E.! Anyhow, this episode had me thinking about the value that each individual carries in them. It talks about the importance of understanding that each individual is so much more than just a name written on a chart; that each patient has value. As I watched I thought about how I’m always hearing stories of patients being treated like a number on a page, instead of a unique human being. I’m not sure if it’s because doctors are too busy to really invest in patients or whether they think too highly of themselves to find value in patient interaction; whatever the reason I believe it’s a gross miscarriage of their responsibility.
According to a great quote by Abhishek Shukla, “The richest people in the world build networks and invest in people; everyone else looks for work and invests in survival.” This quote really resonates with me because I think it alludes to what I see as a vital need for doctors to invest in patients’ individual personalities more than they currently do. And, if they do, what they receive in return will be nothing short of miraculous.
As someone who has a wealth of experience on the patient side of medicine, I have come to really understand this notion: that each patient I meet is an individual with a unique personality and unique interests. However, it’s so much more than just that. Each patient, each individual, is someone who…wait for it…has the capacity to change your life. Each person has something to teach you, whether big or small, and if you miss your chance to let them into your life you have missed an opportunity to better yourself.
I used to shut myself off from others; in college I didn’t make many friends because I wasn’t investing enough in building relationships with other people. The result was, not surprisingly, that I felt isolated and alone. My patient life is a whole different story; I love meeting and learning more about my IBD peers. Each person I meet with IBD is someone I can learn from, I can trust in, and most of all I can lean on when times are tough. It doesn’t matter where they come from; it doesn’t matter that I haven’t met them in person; it doesn’t matter how old or young they are…the list goes on. All that matters is that they are valuable and that they are beautiful just the way they are.
I have been fortunate to meet many of these awesome IBDers through ImproveCareNow’s Patient Advisory Council (PAC). I joined the PAC to get involved and help other IBD patients but what I have received is an “IBD safe haven”. The PAC is judgement free place where I can express myself while also being shaped by a great group of my IBD peers. It was not this safe haven that originally brought me to the PAC, but it is what keeps me coming back.
Recently, I’ve talked to other PAC members to better understand what keeps them coming back. Many have the same feedback: ImproveCareNow (ICN) and the PAC know how to make people feel valued. As a research network ICN and the PAC know the importance of data, and they understand that there are stories behind it. They know that having a solid foundation rooted in valuing all stakeholders is the key to success. But what makes ICN and PAC really incredible is that they delve farther than just knowing people are valuable; they express gratitude for the value they see in their colleagues as much as possible. People want to know they are valuable. But sometimes we’re too busy or wrapped up to let our peers know. We live in a busy world where often letting someone know they did a good job, they made a difference, they are valued is an afterthought. However, these easy expressions of gratitude can go a long way to boosting self-confidence and fostering a sense of community amongst those involved.
The PAC has several tangible ways in which we express gratitude for our members. We start by not having an application process so we can breed inclusivity. We work on projects in task forces and as a full group because members shouldn’t be limited to one set of interests. We celebrate one member on each monthly call and share our members’ stories via social media. And, above all, we celebrate each other by supporting one another. PAC members can lean on their friends when they’re sick. A perfect example of this was during the Fall Community Conference when our co-chair Bianca landed in the hospital the day she was supposed to head to Chicago. Despite being really sick, she still came to the conference. My take on this is that a) Bianca is one of the toughest people I know, and b) her wanting to be able to see PAC friends in person was such a strong motivator…enough for her to find a way to get out of the hospital and make it to the conference. We support each other because we know we’re stronger together, than we are apart. A strong council can be a successful council.
The PAC is also successful because of the platform and people we are connected with through our partnership with ICN. The PAC is an integral part of the ICN network that includes 92 centers in the US, UK, and Qatar. Metaphorically we are small fish in a very large pond, but yet ICN staff and members make the pond feel a whole lot smaller. Its emails telling us we did a good job, emails that are devoid of jargon and filled with honesty that do the trick. It’s bonding over hockey or sharing real life experiences that transforms a working relationship into more of a friendship. In the end this little fish is valued and sees value all around him and he likes that; this pond is this little fish’s home. This is why I ImproveCareNow.