@Newly: My Journey to Finding Support and Becoming an Advocate

I didn’t get the information I craved when I was first diagnosed with IBD. So now, I do all I can to share my knowledge with others.

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Fast facts

Name: User name @Newly on Bezzy IBD

Location: United Arab Emirates

Year of diagnosis: I received a diagnosis of ulcerative colitis (UC) in 2022, but my symptoms started in 2021.

Bezzy member since: 2022

Describe yourself in four words: devoted, kind, explorer, learner

Go-to healthy snack: banana, and sometimes raw almonds, walnuts, and a spoon of honey

Your happy place: always at the beach

Best piece of advice you’ve ever received: Hang on, and things will become better.

Person who inspires you the most: my mother

Hobby: exploring, traveling

Song that makes you smile: “Eshougul.” It’s a very old song in Persian. I don’t understand much of it, but whenever I hear it, I smile and laugh.

Favorite movie or show to watch: Jim Carrey comedy movies

Pets: I don’t have any currently, but I like all kinds of pets, especially cats.

One piece of advice you would give to your younger self: Take care of yourself more. Put your health before anything else.

Q&A with @Newly

Tell us about your diagnosis. When were you diagnosed? What were your first symptoms?

My first symptom was a bloody stool. That was early, but it wasn’t continuous, and it was mild. In late 2021, it became heavy, and the pain increased. On the first day of January 2022, I went to the ER, where they did many tests. They saw inflammation in my colon and did a scope to confirm it. The ER doctor immediately diagnosed me with UC (a form of inflammatory bowel disease, or IBD).

Describe a typical day in your life.

I wake up early in the morning, do some work, go with my soulmate to exercise, grab a snack, and complete some tasks.

At sunset, I’m home or close to home, preparing for the next day.

However, with IBD, there’s no “typical” day, as everything varies depending on my condition. Fortunately, my health has improved, and I am continually trying to get better.

How do you balance everyday tasks with managing your condition?

I take things slowly, one by one. If I feel exhausted or overwhelmed, I stop and rearrange my plans. My soulmate also helps guide me whenever I overload my schedule with more things than usual and forget to stop or take a break.

What’s one thing you wish you knew right after your diagnosis?

I wish I’d had more details [about UC] and that the ones I’d received were more accurate. Getting accurate information is important because it’s crucial to understanding the condition better. I did most of the research by myself.

I also wish I’d been better informed early on. I would have made better health decisions if I’d understood what things I needed to avoid and what things would help my condition.

What helps you get through bad days?

During the deepest flares, what helps me most is the emotional support I have.

I’m fortunate to have one of the best doctors ever. He’s so compassionate and understanding. It took me a long time to find him. Even if he left my country, I would want to continue to work with this doctor for my care.

Breath work and meditation also help.

What do you wish friends and family understood about your condition?

How the process is going, what restrictions I have, how I manage it on a daily basis, and that I have up days and down days.

I also wish others understood that things can change suddenly, and I don’t have control over that.

What advice would you give to someone just starting treatment?

Be patient and give it time. Also, monitor your body for signals on how it’s going to react.

Do what you can to care for your body.

What led you to become involved in advocacy work for your condition?

I received care at one of the best-ranked hospitals in the world for a month, but it felt like they couldn’t do anything to help me.

It seemed like the medical team was constantly surprised by my condition. They told me they couldn’t do anything for me and that I was only there to get access to painkillers.

Also, at the time, I couldn’t find any doctors who really understood my feelings, my pain, or my symptoms. They didn’t get what I was going through emotionally or physically. I saw many doctors before I found the right one.

I realized that I needed to learn more about my condition on my own and do more for myself. I took inspiration from my mother because she fought so bravely long ago when she had a GI condition that we didn’t understand.

I tried to find other channels of information and sources of support. So, I contacted the Crohn’s & Colitis Foundation, which has been very helpful.

Every complicated disease, such as IBD and others that don’t have a cure and affect people their whole lives, needs to be better comprehended around the world, especially in rural areas. People need to understand how some of us are frustrated and emotionally tired, which can worsen our conditions.

What does being a part of Bezzy mean to you?

It gives me great relief to be a part of the Bezzy IBD community. I feel supported.

The community provides me with detailed information that wouldn’t be available to find elsewhere. The members candidly share their raw experiences. Members are there for each other and back each other up. They offer support for everyone, from those actively experiencing flares and issues related to the condition to people who are in remission.

I would like to send my appreciation and gratitude to everyone who participates in this community — editors, guides, technical support, members, and anyone else who is involved in any way. Whether it’s sharing a word or emoji, spreading awareness about IBD, or handling technical tasks to maintain and update the community, every contribution matters.

IBD needs more global awareness, especially in certain communities and in rural areas. We should find ways to reach everyone, not just patients but also healthy individuals. Patients live with this daily and understand it well, but it’s equally important for the general public to be informed and aware.