Patient Blogs | Ulcerative Colitis
What I’ve Learned From Having Ulcerative Colitis
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There was a time when I didn’t think I would come to terms with accepting ulcerative colitis or living with a chronic illness. I was too consumed in thinking about the “what ifs” of the future and how much this disease has taken from me. I was angry, scared, and felt uncertain about it all. All the things that I’d dreamed about felt far from my grasp. It was all just too overwhelming. They definitely don’t hand out Chronic Illness for Dummies when you get your colonoscopy and biopsy report!

It almost becomes like another matter-of-fact thing that happens to you and is added to a scrapbook or a family album. But to the patient, it is more than that. It’s a tumultuous life change with many transitions.

I’m a big planner and not so spontaneous! (As my younger sister regularly reminds me.) Having a chronic illness has changed that for me. I have learned to be adaptable and more flexible with my schedule and my body. It took me a number of years to be kind to myself and understanding the difficulties my body goes through during flares, periods of heavy medications, and malnutrition. I still struggle occasionally with maintaining a happy medium between respecting my body’s limits and wanting to fully experience and live my life.

Many of our fruitful (maybe even not-so-fruitful) experiences come from interacting with others. It’s part of the growth process that makes us, us! And those interactions bring many meaningful relationships. Life is a collaborative process, starting from the first mere interaction of cells to the beautiful end result of a person. And if our cells can produce something so profound, we can do and accomplish anything.

From these interactions, we can start conversations about tough topics. I didn’t realize how much I was hiding from others and running from my disease for a good number of years. Accepting chronic illness was never a New Year’s resolution for me. But I did something that was a little close to it. I reluctantly joined a patient advocacy group, convincing myself it would be a short stint. But 4 years later, I’m still a very active participant.

Being part of the patient advocacy group really transformed how I saw myself and what I can do. This group has given me the space to share my challenges and grievances in adapting to a chronic illness and some of the limitations I felt blindsided by or wasn’t even anticipating. I felt safe in sharing my symptoms, discussing challenges during my academic years as a student, and learning how we can support and teach each other about chronic illness.

Ten years ago, I would have never thought I would be involved in something as big as patient advocacy and being so open talking about ulcerative colitis. Once, someone said to me that I was “too timid, too quiet to make a difference in anything.” And that stuck with me. Why would anyone want to hear what I was going through? I was no different than any other person going through challenges in their lives.

But I learned that mentality can be very harmful. Everyone has very different, unique life experiences, and those experiences can help shape another person’s life. What we do has the power to change other people’s lives, not just our own. All actions are significant and can leave an impressive imprint on someone else. It can be a gesture, a few words, or a conversation among professionals.

Self-growth isn’t a linear process, it comes with many missteps. I had to learn how to manage my medications as well as I manage my skin care routine. I also prioritize my mental health as well as prioritize buying books and journals. Mistakes will happen. Tears of frustration will happen. And questions of self-worth and strength will make their way into your subconscious. This is an inevitable part of self-growth. I’ve taught myself to accept its presence, feel the emotions, and work toward making the change.

Fatigue has been my Achilles’ heel. In previous posts, I’ve gone into some detail explaining how it’s affected my life -- like walking through a fog. Fatigue is a multifaceted side effect of either the disease, medication, or both. I was hearing from too many patients that they were labeled as “lazy” or “unpredictable” or “uninvolved” because their fatigue has become too much. Too many patients were turning down higher education or advanced career promotions because they weren’t sure if accommodations would exist to support their disease.

And I got tired of the misinformation and perception on fatigue. I wanted to do something that would give all patients with chronic illness the same opportunities as their peers and colleagues. The timid, quiet girl would be no more. I never thought of myself as brave or vocal, but maybe illness really does change you. In a turn of events, I was involved in a presentation about fatigue, and there was such incredible support and positive feedback from the audience that we have continued to work on it as a research proposal.

Somewhere in life, our experiences no longer become just about “me,” but about “us.” When I gave myself the opportunity to step out of my comfort zone, I really learned to confront my fears: about the disease, the medications, and societal pressures. There will always be more challenges; the only difference now is I have my village.

 

 

Photo Credit: Nurfah Pontoh / EyeEm via Getty Images

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Nour Al-Timimi

Nour Al-Timimi

Diagnosed since 2011

Nour Al-Timimi has been living with ulcerative colitis since 2011. She writes about inflammatory bowel disease to raise awareness and reflect on her connection with other patients. Al-Timimi is involved with the Patient Advisory Council (PAC) to collaborate on projects and toolkits with other patients. She enjoys science fiction novels and movies, hiking with her family, and playing with her cats, Cinnamon (“Simmy”) and Rocky.

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