Posted by Nour Al-Timimi on May 28, 2019
Hello! My name is Nour (means “light” in Arabic). I graduated from college, where I majored in Cognitive Science and minored in Communication. Since 2011, my diagnosis has changed a few times from Crohn’s disease to ulcerative colitis, and then back to Crohn’s disease. It has been quite a roller-coaster! There was nothing I wanted more than to be symptom free and respond positively to medication. It definitely required patience. To share one interesting fact about me…I have been graying since I was five years old! No, it did not all just suddenly happen in my 20’s! As for my age, I will give you a hint. I was born on the same day and year a historical event occurred in East and West Berlin.
I think it would be fair to say that one of the greatest struggles with learning to deal with a chronic illness is, well, dealing with a chronic illness. For most people, it is such a new experience and life adjustment from all avenues – personal, interpersonal, to even academics. You are suddenly a new person. And there is something incredibly amazing about that, almost renewing. Having a chronic illness does not make you less of the person you were. In fact, I believe it makes you more. And it is something that is not immediately recognized. I can attest to that. I was adamant that a diagnosis was not going to change who I am and what I can do. I still thought that I could do it all. Which is great, right?! We all want to do it all: work, study, volunteer, sports, hobbies, and family. For all who strive to be superman(woman), which is an amazing and applaudable feat, let us not forget there are only 24 hours in a day! And for those of us with a chronic illness, do not forget to be about mindful and gentle with your body. Although that is great reminder for everyone, not just IBD folks! This has been my great struggle. SLOWING. DOWN. Learning to step back, breathe, and enjoying the process.
I still want to do it all. However, I have realized I do not have to do it all at the same time. Some goals might take longer than others and that is perfectly okay. I was right that a diagnosis cannot define me, but I won’t be able to do anything if I am not attentive to my health. For many years after my diagnosis, I was feeling somewhat defiant; this defiance was directed towards my body. I was treating my symptoms as if my body and disease were two different entities. I was my body and my disease was something else, something that was abstract and not related to the visceral organ inside of me. It was quite a detached experience, not a healthy one at all. My rationale was that if I could separate myself from the disease then it could place no limits on me. Unfortunately, it doesn’t work that way. And I learned that the hard way after two difficult relapses that resulted in hospitalization. I ignored everything my body was trying to tell me. SLOW. DOWN.
We live in a society where if you are not doing at least 50 things, then it is not good enough. And that is hard for a healthy person, let alone someone who is grappling with a chronic illness. I am learning to listen to my body, learning to ask for help, and learning to pause when I need to. I don’t have to stop, but pause just enough, and then continue when I am feeling better. There will always be a twinge of regret or embarrassment for “wasting” time, but time is not wasted when you are in better health.
On this road of IBD self-discovery, these past eight years have been a whirlwind! With a great splash of highs and lows.
💚 Committing to a new diet? Check.
💙 Maintaining a strict medication regimen? Check.
💚 Adjusting to medication side effects? Check.
💙 Gaining new gray hairs? Can I get a check, please?!
I have an amazing family who have been great support on this adventure with me. My younger sister relates to my struggles. We are IBD buddies! She encouraged me to apply to PAC. I am the quieter, more introspective older sister and have always been tentative about talking about my own IBD. I tread a bit more softly and perhaps felt some discomfort talking about something that is not quite glamorous. I mean people tend to laugh uncomfortably when talking about poop, right?! But a while back I had made some personal goals to step out of my comfort zone and challenge myself to do things that scared me (within reason I should add). Joining the PAC was that first step. Being part of a community where you can work together to find solutions that can help newly diagnosed patients and patients who continue to struggle with proper accessibility to resources. I am excited to work with the PAC and fellow IBD peers. My primary interests lie in mental health and research. I believe in the impact that we can have, and that all of our unique experiences can contribute to something greater.
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