Posted by Zehra Al-Timimi on February 19, 2018
My name is Zehra and I am 20 years old. I began experiencing symptoms that were probably resulting from IBD as early as five years old. I was not officially diagnosed until I was 14. After multiple severe relapses, consisting of profuse blood loss and dramatic weight reduction, my colonoscopy/endoscopy revealed I have Crohn’s disease. Unfortunately, my diagnosis happened at a time of severe disease relapse, which impeded my education significantly. I took several years off during high school to cope with my disease and multiple life challenges, which merited the need for self-care. During this time away from school, I explored my passions further to give me a sense of purpose, productivity, and victory over IBD. After so much struggle, I am finally in my last year of high school, and I'll be graduating in June if all goes well!
One of the most challenging things for me to accept has been that there will be significant parts of my life - like my education and career - that may be delayed because of unpredictable symptoms related to my IBD. Because of this, it was crucial for me to go through a process of acceptance - to let go of matters I cannot control. I was and still am a very independent and self-driven individual who enjoys taking the initiative to accomplish things I value, such as enriching family relationships and taking measures for self-growth. I have come to accept that it does not make me weaker or less independent to seek help, relax, or delay certain plans to maintain my well-being. After all, success in other aspects of my life rests on my ability to care for myself first and successfully be compassionate to myself.
I made the initial mistake of not vocalizing my needs because I did not want to feel like my needs were forcing others to compromise their time and attention. As a minor, I had anxieties that the consistent doctor appointments, check-ups, and follow ups were taxing on time for a working parent and I feared they were also a burden for my teachers who did not quite understand the nature of my disease. During my time of personal exploration, I decided to transition to an online schooling environment, which reduced many of my academic-related stresses. I also began consulting with a psychologist weekly. Discussing my fears, passions, and insecurities in a non-judgmental setting allowed me to see issues in a new, positive way. I began to see unpredictable events as opportunities to grow and enhance my adaptability, as opposed to just being hinderances to my short-term and long-term goals. Receiving psychological help and support from my family and teachers has made life a much more enjoyable and meaningful experience even with the challenges presented.
To further my healing, one of the GI physicians at the clinic I am treated in suggested I get involved with ICN and the PAC. The PAC consists of individuals who understand the importance of community for those living with a disease that is so invisible and isolating. By creating a community, they encourage one another to provide tools of healing. There is an inspiring cycle of turning difficult experiences into resources of comfort, and of bringing out the beauty in what can be a very painful situation. In doing so, the PAC brings comfort to each and every member, as well as the whole IBD community.
As part of the PAC, I want to be provided with the privilege of learning about what tools other patients could have used during their relapses and find ways to bring these tools to life. From creating a network of psychologists at local hospitals who are willing to connect with patients online, to creating tangible toolkits that provide necessities for patients with IBD, like thermometers, heat pads, school resources (such as ways to have an IEP or 504 plan), and much more - I believe we can be creative in our abilities to generate funds and advocate for more community involvement. Although certain projects may take a very long time to fully realize, I would love to participate in as much of the process as I can and create things that make a real difference in the lives of patients. “What is the essence of life? To serve others and to do good.” (Aristotle)
Crohn’s disease has been a tiring, relentless, yet beautiful doorway of self-discovery, and the PAC is helping me open that door.
--
Stay in the LOOP - sign up for updates and never miss a post!
Meet New PAC Members – read their stories