IGNITE - Community and having a relationship with patients is important

Imagine being diagnosed with a chronic illness in the midst of a global pandemic and lockdown. How does a young person develop resilience and thrive when facing incredible health challenges in isolation? How can they connect with people who understand, who can normalize IBD and offer support and validation about experiences that are still very stigmatized? Not only was Hannah able to develop resilience (on her own terms) and thrive (in the face of difficult surgeries and complications), she also found a community in ICN and the PAC and has grown into an incredible patient advocate. In her #ICNCC23S Ignite Talk, Hannah shares the story of her diagnosis, what resilience and community mean to her, how asking questions and getting to know patients can open the doors to more inclusive and whole-body care.

Be inspired by Hannah's #IgniteTalk 🔥

Hey everyone! My name is Hannah Malerman and I am one of the communication co-leads of the PAC (along with the wonderful Caitlyn Morris).

I was diagnosed with ulcerative colitis in 2020. It was around April when I started to notice the severity of my symptoms: constant stomach aches, fatigue, easily tired out, loss of appetite, and so much more. Because of COVID I wasn’t able to see a doctor in-person. It took a few months for all of us (being my doctors, parents, and myself) to understand how bad it actually was.

I was admitted to C.S. Mott's Children's Hospital in July and stayed there for around three weeks. During that time I was diagnosed with IBD and a terrible case of C-diff. At the time, I was just excited to go home after a big diagnosis, however that didn't last long. A few days before my 15th birthday and 2 weeks after getting home I was readmitted to the hospital. I wasn’t thrilled to be back but I understood this was a necessary step so I could start feeling better.

In September of 2020, I had a total colectomy removing all of my large intestine. Recovery was a rocky process. It was a nightmare. It was a big adjustment. Yes, I was feeling better, but I was now figuring out what this new diagnosis meant for me. I was dealing with major lifestyle and dietary changes.

In December I had my J-pouch surgery. I definitely underestimated how my body would react. My 15-year-old brain thought I would feel back to normal in a few days. I was definitely wrong. A few weeks after my surgery I got pouchitis. During all of this I was reminded how important it is to give yourself grace. I quickly learned the hard way that if you push yourself too much to get better it would do more harm than good. But if IBD has taught me anything, its resilience, and the importance of community.

Being diagnosed with IBD was scary because I had never heard of it before. A lack of understanding of my own diagnosis brought many more feelings of stress and anxiety. Like I was describing earlier; the whole experience was challenging. But I got up. I’m not here to tell you how to be resilient. I’m here to tell my experience with resilience.

When you go through something that changes you, you have two options: The first one is to dwell. You can have your life center around the new obstacles you may face, or you can be resilient. You can get up and show others that no matter what you go through you are strong. Resilience doesn’t just show others how courageous you are, but it also proves it to yourself. It shows you that you can go through a lot but still choose to get up and keep going. IBD does not define who I am.

In my experience, something that fueled my resilience was positivity. Positivity was my main focus when in the hospital. Yes, I was having to do colonoscopy prep some days and it did suck, but at least I would later know what's happening to me. I chose to look on the bright side. That's one thing that always kept me going. I could be getting a total colectomy but at least it was better than keeping the colon!!

Yes, I did have moments when being positive was difficult, but those moments made me more resilient. They showed me that I can still have a chronic illness and come back stronger after a traumatic experience.

Resilience is the power to be able to bounce back. The power to stand up after you’ve been knocked down. Resilience is also learned. I’ve learned resilience from some of the greatest people within my community. Just some examples would be all of the amazing PAC members who consistently have resilience, my uncle who always bounced back, and my friends and family who constantly push me to be my best.

Even though this whole experience wasn’t the grandest, I learned so much. Having a sense of community is very important in general, but while experiencing chronic pain and many procedures, having supporters around you is essential. I am very lucky to have a community all around me helping me thrive.

I’ve been through a lot. But no matter what, my community was there for me.

When my doctor first told me about the PAC, I was hesitant to join. I wasn’t confident in the understanding of my disease, I didn't know anyone else my age who had gone through the same thing as me, and I was still healing, mentally and physically from what had happened. After many calls and talks, my family convinced me to join the PAC.  My uncle, in particular, normalized IBD for me. He taught me all the tips and tricks around IBD. And without my uncle and his advice I would not be a patient advocate.

I joined the PAC in February of 2021. I had just recovered from pouchitis and didn’t know anyone with a J-pouch. The PAC has provided me, and so many others, with such a safe space for all of us to learn as we go, lean on each other, and grow together. They normalized IBD for me and showed me how to advocate for myself and make sure my voice was being heard, not just in the doctor's office but in any environment.

Speaking from experience, it isn’t uncommon for patients to feel overwhelmed and alone with everything going on because they might not know someone who's going through the same thing. Having a community to remind you how much you matter and how proud they are of you even when you're at your lowest is so crucial. Because when you feel like your world is crashing down and everything is going wrong, someone else telling you everything will be okay makes you actually believe that. A community has someone’s back through thick and thin. IBD brings out the thick and thin, but a community, they are the people who are by your side for all of it. Who supports you through it all.

Before I had known about the PAC, I had looked up resources online to help me understand what was happening and create some sort of expectation of what was to come. I ultimately found out most of the resources published about IBD were created by doctors. Most resources used lots of medical terminology and vocabulary so as someone who was just thrown into the chronic illness world, I had little knowledge about any medical terms. It ended up taking multiple tabs open with a medical dictionary to figure out what something meant.

I ended up finding resources made by PAC members and immediately felt heard and understood. With the pandemic, it was hard to connect with people who also had IBD. The PAC creates that environment where we can talk about any problems we may have in the clinic or in any setting.

The PAC creates these resources for patients with language they can understand. These resources that we create make a patient feel like they aren’t alone by helping the patient understand what is happening. It helps reduce extra anxiety or unrealistic thoughts about any concerns they may have. These resources provide comfort by showcasing people who have overcome similar experiences. They show that it’s not just medical professionals who should talk about IBD but also patients and their community.

Now I'm going to tell a story.

My doctor knocked on the door to come in and start my appointment. She first started off by asking how I was feeling and asking what was bothering me. She started talking about my symptoms and asking what my pain number was on the pain scale and what it felt like? Sharp, dull, pressure, etc. She felt my stomach and did all of the routine checks. She starts talking about symptoms and what the next steps in care would be.

But now I'm going to tell the same story from another perspective. I’m sitting on the exam room table anxiously. All of a sudden I hear a knock and I say come in. We greeted each other and got started with the appointment. My head is racing, making me forget some of the most important details. I explain how I'm feeling, and I can see the look on her face. She’s almost sad. I get more anxious then because I know what's coming my way. “I think we should try this medication next,” she says. My stomach drops and my mind starts racing about what this entails. Infusions, medications, more appointments, procedures, side effects? All of these things made me more nervous and afraid.  

I’m telling you this story to help you see how community and having a relationship with patients is important. Without getting to know your patients, you lose the community environment. Having a relationship with patients and understanding more aspects of their life rather than just IBD helps you to provide all-around care and creates a trusting personal friendship with them. This relationship helps patients speak up and advocate for themselves and their care.

My doctor didn’t ask about my feelings about changed medications so how would she know that this made me more anxious? Asking small questions like “How does this make you feel” or “how is school?” creates an environment for the patient to talk about any concerns they have. There is value in having a relationship with your patients. Having that relationship with them opens the doors to more inclusive and whole-body care. We understand that you see a lot of patients a day, but we just want you to remember we only see you for 30 minutes every so often. Your interactions with us in those 30 minutes will leave an impression on how much you care about our overall health. Treat the person, not the disease.

Community isn’t just a sense of being there for someone. It’s encouraging them to do good, pushing them in a healthy way so they can reach their potential. Having a chronic illness is rough. It’s not easy to deal with, but the community around me has made this journey a little easier.

The IBD community has brought me a place of comfort in a time when everything was out of my control and overwhelming. I am forever grateful for my community. The PAC, in particular, has shown me how to use my voice for others and most importantly myself and my care.

I encourage you to think about your relationships with your patients.

💚 What support systems or sense of community do they have?

💙 How can you help establish a sense of community within your care center?

💚 Do your patients have a group of others to talk to or relate to?

💙 Do they know where to look if they want IBD resources from a patient perspective?

While these questions and reflections might take a few extra minutes out of your day, it will make the patient's day and care so much better. Simple questions can improve a patient's all-around care so much and ultimately improve mental health of patients and more.

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Want more 🔥 Ignite? Read all Ignite Talks from patients, parents & clinicians.

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 stay #InTheLOOP with IBD stories on the ICN 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 

• 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 family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria

• Invite someone to download 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 - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa