Patient Blogs | Ulcerative Colitis
What I Wish People Knew About Ulcerative Colitis
photo of woman wearing hijab looking at sea

Not too long ago, perhaps a few weeks ago, I was telling a colleague how I don’t like describing an unfamiliar person by their physical features. I obviously don’t know them enough to be able to describe them by personality or character trait, which makes it difficult when speaking or referring to them. All the information that I have is what I can physically see. “Why does it bother you so much?” she asked. “I know they are more than what I can see, and I feel like I’m doing them injustice by resorting to describing just their physical features.”

On my drive home later that day, I thought about how a random stranger would describe me. Someone who doesn’t know me at all. Just a brief first interaction. I’m a hijabi, I wear the headscarf. I’m barely 5’1”, olive skin tone, hazel eyes, and walk very briskly. Friends joke that I walk like I’m “on a mission.” To someone else, it could be interpreted completely differently. But in those brief moments, all they know of me is how I look and maybe act and talk.

There are things you can’t immediately read about someone. Having a chronic illness is one of them. Not all diseases are visible, and ulcerative colitis is one of them. Unless it’s something I’ve mentioned, no one will be able to tell. If I’ve lost weight because of a flare, it might raise some questions. When my face looked more fuller, I got jarring responses that didn’t reflect how I felt. “It’s nice you finally took our advice and gained weight!” A family acquaintance exclaimed. I’ve even been questioned by a medical provider if I had developed an eating disorder. I left her office feeling very upset and almost in tears. Needless to say, I no longer saw that provider after that interaction.

Losing or gaining weight can be a result of many things, such as chronic inflammation and medication. In the beginning, I was more reserved and wanted to tread carefully with my words. But I realized after some time, I shouldn’t be the one who had to watch my words. 

I’ve always wanted to say, “Please be mindful of what you say. You may not know who you’re speaking to or what kind of journey they’ve been on.” I’ve learned to be more blunt and say, “It’s a side effect of a medication.” I still didn’t like that I had to justify my symptoms or side effects. I’ve heard enough from “It can’t be that bad, right?” to “Wow, make sure you don’t mention your disease to a prospective spouse.”

Statements like that, whether good-intentioned, have brought up so many memories of when I was at the height of my illness. I felt like I had to hide being sick. It wasn’t enough being sick, but also pretending it wasn’t that bad. Pretending that everything was OK. People were only able to see what I had selectively chosen to portray about myself. And in the process, I built this façade that wasn’t being true to who I am.

In 2015, I was in a graduate program to obtain my MS degree. I also happened to go through a severe flare that required hospitalization. I remember mentioning to the nurse that I can’t be admitted, I needed to drive back to Los Angeles as I had class on Monday. (This was before Zoom classes due to COVID-19!) She looked at me like I had lost my mind. Thankfully, my family talked some sense into me, and I ended up being admitted.

When I look back at this moment, I think about what I was really trying to achieve. My health wasn’t in good shape at all -- my labs were all over the place, my scope showed severe inflammation and bleeding, and I couldn’t keep anything down due to persistent nausea and pain. Yet, I refused to let people know what was going on. Even with my family, I didn’t always share the full extent of my symptoms. I didn’t want them to worry, or over-worry, and I was so tired of tending to a sick body that I wanted to continue doing normal things -- like going to class.

In reality, what I really wanted to do was just stay in my room, focus on recovering, and not worry about anything else. But I was worried about everything, including my health, which seemed very fragile. I wanted to tell my parents that I was not OK physically and emotionally. I wanted to send an email to my professors and let them know about my circumstances. I wanted my friends to know that I haven’t been intentionally ignoring their texts, but sometimes I just didn’t have the energy or the mental space to reply. I wish it was easy to talk about chronic illness without having concerned eyes always watching you. Or even talking about bad days when you are in remission.

You end up worrying more about how others perceive you rather than focusing on staying healthy. I was always fearful that I would be labeled as “unreliable” or “flaky.” Or when something good came my way, I wondered whether it was due to sympathy or true merit. I understand that it’s also difficult for people to interact with someone who has a chronic illness. Perhaps it’s not knowing what to say or knowing what they need. The best rule of thumb is to just ask!

One thing I would want people to know is that it’s difficult managing the duality of a sick body and a recovering body. Patients go through ongoing adjustments, and it doesn’t necessarily get easier over time. I want to do it all -- accomplish goals, learn new hobbies, and go on more rigorous hiking trails. But I have to do it all within my body’s limits. It’s frustrating, and I’ve had my good share of pity parties over it. I want to one day hear, for all patients with chronic illnesses, “You can do it. Don’t worry how long it will take you. You will get there.” I hope this one day will become the norm. Anyone who thought their dreams were too big for them and gave up, didn’t do so because their dreams were too big, it was because the right support was not there.

 

 

 

Photo Credit: Wuku Maktal / 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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