Patient Blogs | Ulcerative Colitis
Connecting With Others Who Have Ulcerative Colitis
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Every once and a while, especially during flares or breakthrough flares, I think about how my life would be different if I didn’t have ulcerative colitis. How would that have affected the course of my life? Would it have changed the person I am today?

I know having these ponderings isn’t constructive, but they help me reframe my perspective and appreciation of life despite having a chronic illness. In another universe, possibly without ulcerative colitis, I know I’d have fewer appointments to worry about, not be on multiple medications, and possibly feel more comfortable around food. However, I did gain something very important: a community of patients who have provided support and resources.

It can be a lot to take in and adjust to in the early stages of your diagnosis. The first point of care isn’t a positive experience for some people with ulcerative colitis. It takes time to find the health care provider that works for you, to learn and understand the disease, and to make difficult changes to your personal life. Whether that means finding a different social circle, compromises in the work-life balance (with more emphasis on “life”), and being patient with your body.

All of the above is definitely easier said than done. There is no magic wand that makes the acceptance part faster! For the first 7 to 8 years post-diagnosis, I was stuck in this limbo. I knew my life had changed but I didn’t want to change my life to accommodate having an illness.

That part I wasn’t ready to accept. When you’re 21 years old, you don’t want to make any sacrifices that might affect your future. I didn’t want to showcase any physical weaknesses that might lead to any doubts about my potential and skill.   

That led to more struggle than I had anticipated. It was a rollercoaster of emotions: frustration, anger, and fear. My involvement in a patient advocacy group taught me to be softer with those feelings and not dismiss them. I began to acknowledge those feelings and learn from other people with UC, and how they navigated difficult choices. I often asked myself, “Is this what the rest of my life will look like? Playing catch up? Putting everything on pause while my body is making choices for me?”

There was a lot of angst and apprehension. Even during remission, I still felt on edge. I had a hard time enjoying the reset to “normal.” I learned that was normal! When you have been ill for some time, the route to health can feel like a tease.

Four years ago, I had some academic plans that fell through because of a health relapse. I was in the midst of another flare and my mental health was suffering greatly. I’d never felt so lost. I ended up taking an unintended 6-month “health sabbatical,” working on my health and figuring out how to heal. The toll of the past 7 years, in addition to the current flare, was the breaking point.

During one conversation with my younger sister, she gently brought up once again the patient group she was involved with called the Patient Advisory Council (PAC). It was a group she had encouraged me to join a few years earlier. “Everyone is so amazing and so understanding, you will love it,” she reassured me. I was still hesitant, but I knew this had to be the step I needed to embrace my journey with ulcerative colitis. My fears were holding me back in this messy, emotional web and I needed to make this change in my life.

This group became more than just a patient advisory, but an extended family. In the beginning, I wasn’t sure how much I wanted to share and was more of an observer. As I started to participate in the development and creation of toolkits and presentations, I realized how much of our experiences were similar. Experiences included things like coping with the onset of diagnosis, adjusting to medication, grappling with the possibility of complications, and dealing with the uncertainty of the future as the fragility of health stood before us.

Despite all of that, there was a level of comfort and peace that I hadn’t felt in a long time. And it allowed me to refocus and prioritize what is important to me. Being part of the PAC has become a valuable asset to my well-being and in helping other patients who were in the same position as me.

If I had to list to newly diagnosed patients why joining an advocacy or support group could be beneficial to them, I would share the following:

  1. It’s OK to take the time you need to adjust and learn about your illness, but try not to do it all on your own. You’ll experience a myriad of emotions that may build faster than you anticipate, and they can start to influence daily activities, relationships, and future goals. It’s important to be a part of a community that can provide support and guidance when things get difficult. Family and friends are crucial to the experience, of course, but it helps to be a part of a community where living with a chronic illness is also a norm.
  2. Start by joining something small, like attending a monthly webinar or virtual fundraiser activities. Many of those allow you to remain anonymous and will help you gain insight into how the groups are run and the discussion topics. It gives you the opportunity to learn more about your illness, healthy coping mechanisms, and practical life management from other people. This no longer becomes a disease you see in a commercial, but a condition that affects a real-life person.  
  3. Find an in-person or online advocacy/support group when you feel ready to fully engage, share your story, and hear from others. If it gets overwhelming, it’s fine to step back and find something that works for you. When I joined the PAC, I felt like I was meeting my long-lost family for the first time. It didn’t feel forced or difficult to be myself. It gave me a sense of owning my ulcerative colitis and being able to help others who are newly diagnosed. It was long overdue for me. Years of suppressing and denying the disease were ultimately the catalyst that affected my mental health, broke my motivation, and dulled my goals.
  4. Once you find your space, it will become natural to advocate for yourself and others! You learn more about yourself as you start to talk to people with UC. I found that I was always too hard on myself and learned to appreciate and respect the process my body took to heal. It was a gradual process, but one that changed me for the best.

Progress originates from the Latin noun “progressus.” It means “forward movement.” Life is always moving forward. Having a chronic illness can feel like being trapped in a still frame while life continues to move forward without you.

But all these little moments -- from diagnosis to remission, to building a network -- are a collection of events that produce progress. It can be hard for you to see how far you’ve come when you’re not able to reflect on your hardships with others. It’s never easy to be vulnerable. In fact, it can be quite scary. Give yourself the opportunity to find that safe space and let it move you forward.  

 

 

Photo Credit: SDI Productions / E+ 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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