When Shira joined the Patient Advisory Council - in October 2020 - she wrote that she was looking for a place where she could use her voice to influence the quality of care other people receive - to change someone else's life for the better. Since then, she has set about doing just that - co-chairing the PAC's Advocacy Taskforce and joining the imPACt podcast where she has contributed to patient-led discussions on topics ranging from Parent-Patient Relationships to Arthritis to Queerness & IBD. In her Fall 2021 Live Online Community Conference Ignite Talk, Shira brought us deeper into her IBD journey by sharing a raw and beautiful account of her own self-inquiry and discovery, of learning to lean in during the dark moments and hold space for the hard feelings IBD brings. She challenged us, as she has challenged herself, to acknowledge that, yes, IBD is a burden and it brings a certain loss of control, but it does not mean the loss of one's happiness or identity.

Be inspired by Shira's #IgniteTalk 🔥 

The first person I told about my Ulcerative Colitis outside of my family was my 9th grade homeroom teacher.

As I was sitting in the back of the classroom struggling to find the words to describe how I felt, she asked me a question that I continue to ponder today. She said “what about your life is really going to change?,” as if she wanted me to realize that I was the one who was making it seem like a bigger deal than it is. I heard her question and I thought to myself maybe it really isn’t a big deal. If I stuff it down deep inside of me it will fizzle away and disappear. I realize now that it wasn't my UC that I wanted to disappear, it was me. I was a month into high school, I barely knew anyone, and I just wanted to fade into the background. This wasn’t the kind of new adventure I signed up for, and it was my ultimate goal to do whatever I could to make my illness and my whole self disappear, regardless of what it would cost me.

The months following my diagnosis were a really dark time for me. I lost so much of my life because I was so desperately trying to hide myself. By trying to appear less sick to others, being sick became the only thing I could see in myself. As I looked at the world around me, I could see the life I had imagined for myself crumbling. And yet, I had so many people in my life praising me for being strong and for handling everything so well.

My question to the people telling me that is, are you telling me I’m strong because you’re proud of me? Or are you complimenting me because I make it easier for you to live your life without feeling the burden of my illness? Don’t tell me my illness isn’t a burden, because you and I both know that’s a lie.

I wish that I had the chance to meet patients early on in my journey and to really see how much more there is to IBD than the burdens of the disease. As I started to learn how to advocate for myself I started to see that it was possible to pull myself out of that deep dark place I found myself in. Connecting with patients and especially joining the PAC allowed me to see that a diagnosis doesn’t take everything away. It’s tough and we miss out on stuff but everything else about me as a person was still there. Getting sick was a new situation added to my life, but I am still living. It wasn’t switched with anything else about me, and maybe I’m not living how I thought I would be, but it certainly didn’t take anything away from me; except for my poop schedule of course. 

Building those relationships with patients who became close friends led me to be able to take solace in those painful moments of grief and anger and frustration. I had to hold space to feel whatever emotions come up without judgement and with no obligation to feel a certain thing for someone else. In those moments I don’t have to hide anything. I rely on being able to give myself the chance for the pain that I’m feeling in my soul to be the biggest thing in the room. The despair can be so deep but at the same time, I found so much peace in having time to retreat into my soul and honor what was really there.

As patients, we don’t get to let go. There is no surrender; there are no breaks. We need to be able to lean in to the dark moments and give our big feelings the space they deserve if we want to work with our bodies and not against them.

Even still I struggle with feeling like I owe it to someone else to cope with my health a certain way. But at the end of the day, it’s my body and my life and I get to choose how I want to live. The darkness doesn’t last forever and I want to be the one who gets to decide when to turn the lights back on. Letting go of the need to live that ‘double-life’ and allowing my illness to take space as part of my identity was something I had to do if I wanted to find my happiness again.

On this journey to put my broken identity back together, I have dealt with so much fear that I won’t ever have the same control over my life because of chronic illness. It’s true that I have a lot less control than I used to, and for me, that is such a scary, foreign feeling. Holding space to process that anxiety helped me see through it and recognize that I am still living. Sometimes IBD dictates my life more than I would like, but as patients we have so much more power than we’re shown just by making the choice every single day to rise above and to push beyond the limits we thought were there. It’s my choice whether I push myself beyond those limits--no one else’s. Knowing I can get up and say “not today IBD. You don’t get to ruin things for me today” has empowered me to work harder to pull myself out of the darkness and advocate for the quality of life I knew I deserved. I couldn’t have learned that without the PAC around me to lead by example and show me how much power I really had to change things for myself and for other patients.

It turns out, my UC diagnosis was a bigger deal than that teacher had convinced me it was. When I heard ‘ulcerative colitis’ come out of that doctor’s mouth 3 years ago almost to the day, my life did a 360 (we took a big turn, picked up some baggage on the way, but ended up near where we started). It took me a long time to learn that my life didn’t disappear, and it took even longer to learn to hold space for the grief and sadness my illness has caused me. But I’ve also learned that IBD didn’t take my happiness or the rest of my identity.

Health is not a requirement for happiness. Let that sink in. I don’t have to be healthy to be happy, and the PAC has done an incredible job cultivating a space where you can see and feel that so deeply.

I am so thankful for my Stanford team for empowering me to keep learning, growing, and advocating for myself throughout my IBD journey, and especially for connecting me to the PAC. I never thought I would want or need to become an advocate for the disease I thought would ruin my life, but here I am. PAC people are special people, and being a part of that has changed my life in ways I can’t describe.

Thank you.

--

Want more 🔥 Ignite? Read all Ignite Talks from patients, parents & clinicians.
Join Shira and the PAC - patients with IBD (14+) are invited to learn more & connect at improvecarenow.org/patients
Feeling like it's time to take action? No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:
  • Invite someone to save the date to attend our December 8 Virtual Community Conference (this free, web-based event is a great way to learn more about ICN from the patient & parent perspective)
  • Invite someone to stay #InTheLOOP with our stories on the blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint (We will be posting 3 more #IgniteTalks - like John's - to the blog over the next couple weeks. By signing up, you'll be the first to know!)
  • Invite a patient (14+) to join the Patient Advisory Council "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 
  • Invite a parent or guardian of a child with IBD to join the Parent Working Group - "I believe I have helped other newly diagnosed families not feel as lost as I was. I believe I am making a difference in my community. And none of this would have happened if I hadn't joined the Parent Working Group." - Carrie
  • Invite someone to download our free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
  • Invite someone to Join Our CIRCLE (connect with our welcoming & supportive community, and receive IBD resources, stories, and ICN updates & opportunities)

Built by Veracity Media on NationBuilder