On June 1st 2022 we celebrated More Than Lupus’s 4th Anniversary as a nonprofit organization. With every year that passes, I try to reflect on some of the things that I have learned as Creator/Executive Director. I am so thankful for the many ways that I have been stretched and challenged through this endeavor, and wanted to share some of those here.
Here are 4 things I have learned in 4 years:
- ONE -
It’s not the Kelli show.
In other news, this is not about me. Every year I have become more mindful of the fact that not everyone thinks like me, processes like me, and connects with the things that I might find important. Every person with lupus is unique; therefore, every person processes their diagnosis differently. “Lupus Support” never has been and never will be a “one size fits all” formula. Some lupus patients desire facts, while other lupus patients want to read something funny. Some want data, while others want distractions. It can be a challenge to find the right balance, but I have tried over the last 4 years, with the help of our amazing Board of Directors and all of you to navigate our way through these waters. Truly, we are a diverse and eclectic community that I have grown to appreciate and hopefully reflect in our content and in the way we offer support for all.
- TWO -
We have to tune out the noise and resist the urge to conform.
Social media can feel like a melting pot of personalities, influencers, and constantly evolving social platitudes. Even in the chronic illness community, the content can feel over-saturated yet empty at the same time. As the leader of More Than Lupus, I have asked myself many times, “Where do we fit in here?” and “Are we even needed?” Over the last 4 years, those check-in’s have become a regulatory process, and what has been made clear through them is this: From my perspective, I am not a “lupus personality” and I’m not an “influencer.” Nor am I interested in flash in the pan trending social platitudes. However, I am a patient-centered advocate that supports justice and believes the heart of More Than Lupus is the commitment to a continual plan of action to improve lupus support and patient connection, which has very little to do with big industry, big money, or networking for the sake of popularity.
- THREE -
My feelings have been and will be hurt.
I am not saying this for you to feel sorry for me, but I am saying this to be transparent with you. We are a small nonprofit and have continued to show up in spaces with other people, platforms, and organizations where there is not only variances in opinions but also power differentials. In these scenarios, I have been hurt by trusting too much, by giving too much, (I am an enneagram 2 with a 3 wing..it’s rough) and by assuming people wouldn’t take advantage of me, take my content, and then throw me to the side for the next more popular or powerful networking opportunity. It has happened and will most likely happen again. My takeaway from all this is that I have the right to set boundaries and be intentional with my relationships - professional and otherwise. In doing so, I have possibly hindered how much we have grown financially. That's on me. But I am not a sell out nor am I glutton for punishment. So, there it is.
- FOUR -
We have not arrived.
I read a quote from former President Obama that said “Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek.” I think we can get so comfortable in our circles (yes, even in our lupus circles) that we can think that we have arrived. We have our worthy causes that we champion for, like more funds for lupus research and more awareness in May. But there are other important issues that can make us uncomfortable to support. They feel too big, too outside our circles. But as the Talmud says, "Do not be daunted by the enormity of the world's grief. Do justly now, love mercy now, walk humbly now. You are not obligated to complete the work, but neither are you free to abandon it." We are not free to abandon the work, even when it might make us uncomfortable. I am just going to say it, we have not arrived. We are not static. Or we shouldn’t be.
In closing, I must say that the most important lesson I have learned in my 4 years of leading More Than Lupus is that I AM STILL LEARNING. I am still learning how to love more deeply, and to listen with intention and grace. I hope you join me in learning and growing and loving.
Because we are just getting started.
In this together,
Kelli
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