I was torn between needing to rest, and not wanting to miss out

I had the pleasure of attending the ImproveCareNow Fall Community Conference in Chicago in September. I had a great time meeting my fellow PAC (Patient Advisory Council) peers in person! They helped guide me through the various panels and workshops. I do admit that there were times when I felt overwhelmed. Not necessarily in a ‘negative stimulus’ overload, but overwhelmed with information, discussion, and flow of support from my own peers, parents and families, administrators and providers. There was one point during the conference, quite early in the morning, perhaps no later than 10:00am, where I was struggling to keep my eyes open – my old friend fatigue was back. I had to excuse myself to go back to my room to take a nap. Guilt, another familiar friend, greeted me. I was torn between needing to rest and not wanting to miss out on learning.

After a mental debate, I swallowed my pride and turned to my friends and embarrassingly admitted that I was feeling fatigued and needed to close my eyes for a while. I was met with warm hugs and encouragement to get some rest. For the first time in nine years, I didn’t have to explain WHY. Out of habit, I was getting ready to give an explanation, and I was stopped mid-sentence, “Girl, we all know what you’re going through, you don’t have to apologize, we get it,” my friend reassured me with a wide smile.

This brief, supportive exchange got me thinking about everything that led me to that moment and how support is such a wonderful thing. The fact is that having a chronic illness can be isolating, and having a life-long, chronic illness with no cure can cause feelings of frustration and hopelessness. It is not an easy thing to accept or even understand. And sometimes, even when it is all going alright, it can be overwhelming - medications, doctor appointments, diet changes, annual colonoscopies, blood work, and the very exciting routine of stool samples! Whether you have been dealing with this for one year or 10 years, things constantly change, and we constantly must adjust.

It took me a good nine years before I was ready to talk about having IBD. Even when everything wasn’t great, I pretended it was great. I wanted to feel great. I tried really hard to manifest the mantra of “positive thoughts lead to positive feelings”. I am not quite sure where the breakdown in communication happened, but I don’t think my stomach quite got the message!

Despite my positive thinking not helping my stomach feel better, I do still practice reminding myself what I have gained from being diagnosed with IBD. It sounds weird, I know. Appreciating an illness?! But if I can try to re-frame my experience, it can help in the healing process, not just physically, but mentally as well.

Through my diagnosis, I have had the opportunity to learn about a disease - first-hand! I am a science nerd and I love learning about the body – so opportunity knocked, and well, I am an opportunistic learner. I have built connections with an amazing community of patients, families, providers, advocates, just for IBD! It is a whole world I didn’t know existed and honestly would have never known about if it wasn’t for IBD. I consider that a blessing.

So, even though I have had some personal and academic setbacks, I would not change who I am now for the person that I could have been (without IBD). I am okay, more than okay, with this exchange and admittedly it took a long time to get to this level of attitude and comfort.

As I lay in my hotel room and rested my tired body (without having to explain my decision to anyone), I thought to myself what I would tell a recently diagnosed patient that might help ease their journey even a little bit. I know, from my own personal experience, I didn’t want to talk to anyone about it, even to my own family. I just wanted to continue living my life as if nothing had changed. It was an unhealthy coping mechanism and I put myself in a very disadvantaged position by not opening up and asking for help. If you’re newly diagnosed, or are just starting to open up about your IBD diagnosis (or any chronic illness, really), here are 5 things I think can help:

💚 Find Your Person - You don’t need to hold up a sign and advertise your illness but find your support system. Whether it is a close friend, family member, pen pal, or a professional therapist, find a person (or more than one) and allow yourself open up about IBD.

💙 Have a Plan - Learn more about accommodations and what a 504 plan entails. The resources are there. Please don’t be embarrassed about using them. I wish I had pushed my pride aside and used them. If you don’t need that extra time or bathroom break – that’s great! – but at least give yourself the option.

💚 Get Connected - If you can, try to attend a conference - whether it is a virtual community conference, a webinar, or a conference at a physical location. If that’s not an option, there are many ways to connect online with various supportive groups. The Patient Advisory Council is just one great example. You get to meet patients like yourself, advocates, providers, clinicians, and educators. It really is a unique environment that is there for you.

💙 Talk About IBD - Ask questions, share your story. I started doing this through the PAC, and by contributing my story here on LOOP. But there are many ways to have these conversations. For instance, at conference, I met a pharmaceutical representative who told me about an organization called “Girls with Guts” (what an awesome name!). It’s an organization that supports women who have IBD. They participate in outreach, retreats, and forming friendships. I joined their pen-pal program and they assign you to someone to write a letter(s) to – the old-fashioned way, ink on paper, stamp on an envelope! So great! I definitely love the idea of getting letters in the mail that are not bills! The last time I had a pen-pal I was in 6^th

💚 Be Patient – Be patient with yourself. Be patient with your body. Be patient with your doctor. I have learned to try and make the best of every worst. It is not the default response to have and it doesn’t come easy. Whether you have experienced the worst, or going through the worst, it will not always be the worst. You are stronger than you think.

I often joke that my immune system is a “drama queen” and what a dramatic queen it is.

I sincerely wish, for every one of you, waves of calm to wash over all of your “drama kings and queen’s”! 

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