Originally posted on Jackie Zimmerman

I saw a Twitter thread recently from a friend and fellow advocate who was wondering what his future in patient advocacy looked like. I’ve seen these types of threads a lot over the years and I understand…I’ve been there. Maybe it’s the new set of Lion King socks I recently purchased, but I’ve been sharing this idea of the patient advocate circle of life a lot lately and now it’s time to share it with all of my advocate friends. Whether you’re new to advocacy, or you’ve been around the block a few times, take a peep. Let me know what you think. #sorrynotsorry about all the Lion King imagery.

I believe there is a lifecycle in advocacy.

After almost 15 years in the game this is what I’ve noticed:

  • New Advocates – These are the freshly inspired bunch. They’re newly diagnosed or have a loved one who is. They’re fired up about helping people and are excited to be sharing their stories. They do a lot of one-on-one education and support for other patients.
  • Strong and Steady Advocates – These are the advocates who have been on the scene for a few years. They’re still working on growing a following, and they’re getting some cool opportunities in advocacy. Their hard work is starting to pay off.
  • The OG Advocates – The OG advocates have been advocating for many years. Many started before social media and their names are permanent fixtures in their communities. They’re invited to be speakers at events, to sit at the table with pharma, and are often working hard behind the scenes on things that NDAs prevent them from sharing.

I remember when I started my first blog many moons ago, I was so eager to talk to other patients. To help them. To educate anyone who would listen. A few years in, one of my best friends in advocacy stepped back. She closed her website down, all of her blogs and resources were gone, and I was angry with her. I kept thinking about all the amazing things she had created for other patients that were no longer available. I couldn’t imagine walking away from advocacy and just being done. Wasn’t she letting people down? Was she turning her back on us? How could she do that?

Fast forward a few more years, and I was starting to feel the weight of the work that goes into advocacy. And I do mean work. Never let anyone tell you that your blogs or videos, even your Tweets, are not work. All of us here know the time it takes to write a blog or film a video, create the graphics, and schedule it out on social media. Whether you’re working a job right now or not, your advocacy IS a job and we all take it so seriously. This is why when it stops lighting up your life it can feel very heavy. I didn’t love advocacy the same way I did before. My advocacy fire was slowly dying. The work felt too much like work. The juice wasn’t worth the squeeze and I stepped back. And guess what? No one noticed. People with IBD didn’t have their butts blow up. The MS patients who read my blog didn’t collectively collapse. The world went on. And you know why? Because of new advocates.

The second someone decides to step back temporarily or permanently from advocacy there is always someone new and excited to jump on the scene. It’s some Lion King circle of life shit. Once the new advocate isn’t “new” anymore, they become the slow and steady advocate and if they stick around long enough they become the OG. And I want to really highlight this:

THIS ISN’T A BAD THING! It’s easy to read that and think, “oh so if I take a break, I’ll be replaced.” That’s not what I’m saying. I’m saying that if you take a step back, your fellow patients and caregivers are not abandoned. There are other people who will step in and support them and that is actually a beautiful thing. It adds new perspectives, diversifies our communities and adding more people who back the same cause is never a bad thing. Not to mention the harsh reality of advocacy is that sometimes our friends and peers succumb to their illnesses and in order to keep fighting the good fight we need new people to take their places.

All of this suffice to say: It’s ok to stop. But only if you want to. This isn’t like you’re aging out of the system. Your voice will always matter in your community. Your story will always matter. This is the internet, after all, your shit will live here forever. If advocacy doesn’t set you on fire (in a good way) anymore…step back. Take a break. Hell, stop altogether if you want to.

The work we do as advocates isn’t about us and it’s also 100% about us at the same time.

I always looked at advocacy like an appendage to myself. It is me. I am it. But it’s not. It’s something that I do and when it no longer serves me in a positive way anymore, I can stop doing it. And I have at times. I think that is something we all forget. You have permission to stop if you want to and it doesn’t have to be a moral dilemma. You can always come back and if you have somehow possibly forgotten…you’re probably sick in some way or support someone who is. You need to put yourself first. Your goal is to live a happy and healthy life, and creating content you don’t like, attending Twitter chats that bore you, and stressing out over weekly vlogs goes against the happiness goal and probably wears on the health goal.

The world of advocates, online and in-person, cross condition areas is one of the most amazing communities I’ve ever been a part of. In the last 5 or 6 years, I’ve seen a lot more advocates connecting outside of their primary communities and I think it is only making us stronger. This community sees you. We know how hard you work. We know the time it takes to be a digital creator and we also know that more times than not you’re not getting paid to do this stuff. You may not even be getting thanked very often.

So, fellow advocates, please take care of yourself. Take some time off. Come back …or don’t. Thank you for all the work you do for your communities. Thank you for being apart of my community and for supporting me and everyone else in our growing family of advocates. Your work matters and so do you. Never forget that.

treatments for ulcerative colitis

My story begins in 2011, when my then 13-year-old son first entered the children’s hospital for complications from ulcerative colitis. I felt helpless and powerless – a sensation that no parent comfortably bears. By the time my son’s intestinal health was on the path to recovery, eight months had passed, and a lifetime of irreversible consequences had been set in place. If a platform like IBDLyfe had existed, I believe some of my family’s circumstances would have come out differently. But my mantra has always been that timing is everything in life, and so here I am to tell you about my motivation for joining Lyfebulb on this journey.

My son had been diagnosed with UC at age 9, after several years of digestive issues, but his situation did not reach a life-threatening state until that December of 2011. At that time, he had been on corticosteroids for almost a year and wore the typical “moon” face and puffy weight gain of someone taking long-term steroidal medication. His recent onset of puberty growth had also been stunted. That December of 2011 would be the start of a decline that would lead him back into the hospital in April of 2012 for his colectomy and J-pouch reconstructive surgery (after becoming refractive to corticosteroids for 18 months), followed by his reversal surgery in July, which resulted in complications that led to a third surgery days later. In total, he spent 81 days in the hospital from December 2011 to July 2012.

During the time that I lived in the children’s hospital, so much of my life was put on hold. Of course, I could not leave my job at the college where I taught, nor could I stop raising my younger child, who was 11 years old at the time. But in my heart, I had abandoned the quality of my work outside that hospital. And other people suffered.

As the parent, one of my obligations was keeping family and friends informed of my son’s status. The only source I found at that time was a website whose name I will not mention here but which served then as a great source of sharing information and maintaining communication on an intimate scale with those who needed to know. However, what that site could not provide me were the resources I desperately craved:

I wanted to know what others in my parenting situation were doing or had done. I wanted to talk with those who understood what I was experiencing and feeling without being pitied. I wanted to know about predicted scientific outcomes for the surgery my son was undertaking. I wanted to journal about my experience in one organized place, to create a history of what was happening, lest my memory fail me when I needed to retrieve details for future medical visits with my son. I wanted parental advice on how to productively manage my professional and family life beyond the hospital. I wanted someone in the know to reassure me that my family and I would get through this intact, not just physically but also mentally. I wanted a community to call my own as the parent who was suffering in a different way from my son but suffering, nonetheless.

Here I am nine years later in 2021. My son lives a mostly healthy life with his J-pouch still appearing to do its job, but there are issues. Since he is 23 years old, I have had to step back and let him tackle those issues independently. Still, he reaches out to me as a caregiver and partner on this life journey of his, and still, I am often stumped as to what to say or recommend. Now I am the IBD Community Manager at Lyfebulb, and I am excited and finally optimistic, not only for my son’s potential access to information and resources but also for my own. I could not prevent the personal casualties of 2012, but now there is IBDLyfe. Hopefully I can help current and future caregivers along their IBD journey, encouraging their contribution to this community that has so much to offer … before it is too late. And that can only be better for the patients we love so dearly. I will conclude by repeating my mantra: Timing Is Everything in Life. And the time is now.