IGNITE - My friend...IBD

What if your closest friend had a habit of interrupting your plans and not listening when you begged them to stop? You might might wish to end that friendship. But, as Mahalakshmi points out in her #IgniteTalk, which she shared at both our in-person and our virtual community conference this fall, when "friend" is really a metaphor for IBD there isn't really a choice. 

Be inspired by Mahalakshmi's #IgniteTalk 🔥 

I have this friend.

I’ve known them for almost 10 years, yet I feel like I’m learning something new about them every day. Describing this friend is a bit difficult. They can be annoying, interrupting my life at inconvenient times, frustrating, as it feels like they aren’t always listening to me. But they have also given me a lot of perspective and purpose that I didn’t have before I met them. If my heavy-handed metaphor wasn’t obvious yet, the friend I’m referring to is my IBD.

For as long as I can remember, I can feel how my IBD has followed me. Whether it was how lightheaded I would feel just from attending school, spending hours at the dinner table trying to eat with an extreme loss of appetite, or going to sleep nauseous and in pain, I could feel the weight of carrying this friend wherever I went.

I used to dance before I was diagnosed and I loved it. I loved the grace, the fluidity, moving to the heart of the music. But I hated dancing in front of the mirror because I couldn’t recognize who I saw. I wasn’t able to gain weight and so I was stick-thin, I was pale and my face looked sunken. It took me a long time to be able to look in mirrors again. It wasn’t until I was diagnosed that I realized what was staring back at me, I could finally identify who that friend was that was following me.

It’s no secret that IBD causes huge lifestyle changes. Between the symptoms, medications, side effects, diets, and psychosocial issues, there’s hardly time to breathe. This constant companion managed to fuse with my life whether I liked it or not, whether I had my diagnosis or not. And everything was affected— from brain fog affecting my academics to joint problems making me quit the violin and dance. And the worst part of it all…is that you can’t see my friend. They are invisible and any attempt at talking about this friend was silenced by cultural and societal stigma.

I couldn’t take it; I wanted to break-up. But how?

Is the solution controlling my disease as best as I can so that I don’t notice it anymore? Otherwise, maybe I can just live in denial— seems easy enough right? I’ll admit, I tried it all — any way to distance myself from my illness, to not let it define me, and continue pursuing what I wanted. But it’s tricky, because it’s so easy to be reminded of my friend’s presence. It takes something as small as getting a stomachache, or something as big as my medication no longer working, to remind me that I have this companion. So, I started to wonder. Maybe I’m the problem? Maybe, I’m not trying hard enough to understand my friend either? And what about other people? Did they have their own invisible friends? If I talk to them, can I learn more?

So I set up a playdate. I connected with this incredible community of people with IBD and it eventually led me here, to ICN and the PAC. I met all sorts of incredible patients who had their own “friends”, all with totally unique characteristics. And being part of this community, having a support system of people who really get it, taught me something really valuable: I’ve been afraid of my friend this whole time. Which is and always will be a valid and normal response, but by being afraid I never gave myself the opportunity to envision a more full life — a life where my dreams and passions could co-exist with my IBD, and maybe even be enriched because of this newfound perspective.

And this doesn’t always mean I get along with my IBD. Like any relationship, there are ebbs and flows.

This past year for example, I went from being in symptom and clinical remission in the first half to spontaneously being in a flare in the second half. It’s times like those that make my friend feel like a frenemy. And this is the reality for so many IBD patients. We are constantly having to manage this relationship that is evolving and meaning something new. It can get really emotionally complicated, so it’s important to remember to give ourselves grace. It is okay to feel conflicted and change your mind. But ultimately, we get to set the terms of this relationship. And for me this means knowing that embracing my IBD – the good, the bad, the ugly – and striving for my best life are not mutually exclusive.

There is some inherent power in having such an unflinching view of my chronic illness. Allowing myself to accept the vulnerability that comes with having IBD can actually be empowering. Because now I am staring directly in the mirror and at last I have learned to love the person looking back at me, “friend” and all.

💚💙

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