Reflections inspired by ImproveCareNow

I had the pleasure of attending the ImproveCareNow Fall 2019 Community Conference in Chicago last weekend. 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 had 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 a point during the conference, quite early in the morning, perhaps no later than 10:00am, and I was struggling to keep my eyes open – my fatigue was winning. I had to excuse myself to go back to my room to take a nap. Guilt, my familiar friend, greeted me. I was torn between needing to rest and not wanting to miss out on learning.

Having a chronic illness can be isolating. 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, it does not change the fact that it is still a life adjustment.

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.

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 was trying really hard to go along the mantra of “positive thoughts lead to positive feelings”. I am not quite sure where the fallacy fell, but I don’t think my stomach quite got the message!

I constantly remind myself what I have gained from being diagnosed with IBD. It sounds weird, I know. Appreciating an illness?! But if I can try to reframe my experience, it can help in the healing process, not just physically, but mentally as well. 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. There is 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 if it wasn’t for IBD. I consider that a blessing.

Despite 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.

I would recommend to recently diagnosed patients to try and reach out to other patients who suffer from IBD. I know 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 has changed. It was an unhealthy coping mechanism and I put myself in a very disadvantaged position by not asking for help. To all students out there with any chronic illness:

1.You don’t need to hold 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 your person and allow yourself to be vulnerable.

  1. Learn more about testing accommodations and what a 504 plan entails. The resources are there. Please don’t be embarrassed about using them. I wished 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 to have that option.

 

  1. If you can, try to attend a conference. Whether it is a virtual conference, a webinar, or a conference at a physical location. You get to meet patients like yourself, advocates, providers, clinicians, and educators. It really is a unique environment that is there for you.

 

  1. Ask questions, share your story. I met a pharmaceutical representative that 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 6th grade.

 

  1. 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. These words, they might not seem much, just a string of letters actually, but your experiences create the language for these words.

 

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 all of your “drama kings and queens”!

Nour Al-Timimi is a Marvel enthusiast, avid hiker, and work-in-progress baker! When not working in the PSP office, Nour enjoys reading, writing about various topics and issues, and conversing about the latest science discoveries. She aspires to visit as many museums, waterfalls, and cafes as possible (in no particular order)! Nour has her M.S. in Global Medicine from USC Keck School of Medicine.