IBD Ambassador Balances Advocacy for Self and Community 

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Fast facts:

• Name and username on Bezzy: Danie C. (or Yellziee on Bezzy IBD)
• Location: Atlanta, Georgia
• Year diagnosed: 2013
• Describe yourself in 3 words: loving, honest, determined
• Go-to healthy snack: hummus and cucumbers
• Your happy place: my apartment
• Hobby: coloring books
• Favorite movie: any Harry Potter movie
• Song that makes you smile: W.A.Y.S. (which stands for Why Aren’t You Smiling?) by Jhené Aiko
• Celebrity you would cast to play you in a movie: Gabrielle Union

Q & A:

Tell us about your diagnosis. When were you diagnosed, and what were your first symptoms?

I was diagnosed in July of 2013. It took about 3 1/2 years for me to get diagnosed.

In 2010, after I ate a granola bar, I had to go to urgent care because I had a lot of stomach pain — that was the beginning of it all.

After the urgent care visit, they gave me a steroid for the pain, which I thought would resolve it, but it didn’t. At the time, I was a junior in college, and the school I went to was about 1 1/2 hours away from home. I would go home, and my mom would make me home-cooked meals. I would take them back to school because the cafeteria food was terrible, and I didn’t think that was helping the situation.

That kind of helped a little, and then I started eating baby food as well — it’s something that’s soft on your stomach and easy to digest. I also started going to different doctors.

I had two different GI doctors in Virginia, which is where I’m from. The first one wouldn’t diagnose me. He said it was too early to make a diagnosis and that there was an issue with the insurance.

A year or two later, another doctor finally diagnosed me. They did tests for all types of autoimmune diseases because these conditions can mimic each other, and I was having joint pain as well. They weren’t sure if it was lupus, Crohn’s, or colitis. My markers would come back strange, so they didn’t know exactly what it could be.

It took around 3 years to finally get a diagnosis in 2013. I got the news when I was at work, which wasn’t the best place to find out.

What is a typical day like in your life now?

I usually wake up around 5:30 in the morning. I stay in bed until about 6:15, though, and I call that my quiet time with God. I’ll journal and check my calendar for work to make sure I know what’s coming for the day.

After that, I usually do a 30-minute Peloton ride, and then I meditate afterward for however long I need to that day. Then I shower and prepare for work. I work from home, so I usually eat breakfast while I’m going through my emails.

After work, if I’m not going to hang out with friends, I’ll do some household chores. The night usually ends with coloring or watching Netflix and scrolling through Instagram.

What’s the most challenging part about living with your condition?

I think the most challenging part is knowing that it’s lifelong. There’s no cure. It’s not like when you have a cold and there’s a light at the end of the tunnel because you know there’s an end after 5–7 days.

When you have Crohn’s disease, there doesn’t seem like there’s a light, especially if you’re not managing it well. And I feel like that’s probably been my journey for the most part.

How do you balance your everyday tasks with managing your condition?

One big challenge is keeping my apartment clean, even though it’s really small. I just can’t seem to clean the entire apartment in one day, even if it’s a Saturday and I don’t have work. It just is too much.

I like to explain it to family and friends using the spoon theory. For people with autoimmune diseases, you wake up with X amount of spoons, and every task takes a spoon.

I always think cleaning my apartment is probably 10 spoons, and I only have 12 for the day. So, I typically break up cleaning over the course of 2 days. I’ll do my kitchen and my bathroom Wednesday, and then I’ll focus on my bedroom and laundry the next day. This helps me manage my time so that I’m not completely exhausted at the end of the day.

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

When I moved to Atlanta and was meeting new friends, it was a little hard to explain that even though I look fine, chances are I’m not. One thing I always say is that if I don’t say anything, then I’m probably uncomfortable. If I say I really don’t feel well, then I’m in a lot of pain.

Space is key. If I want to sleep, I don’t want to answer my phone or be on FaceTime for hours at a time. Checking on me is fine, but respecting boundaries and space is important.

What was one thing you wish you had known right after your diagnosis?

There will be bad days, but there will also be good days. Be grateful for those good days, and don’t take those for granted.

What helps you get through the bad days?

I give myself grace and focus on things that make me happy. If I feel like journaling will make me feel a little bit better about the situation, then I’ll journal. If it’s coloring, or if it means putting my phone on Do Not Disturb, then I will do that as well. I’ll do whatever makes me feel slightly better mentally.

Do you have any advice for finding the right doctors and getting a diagnosis?

One thing I tell anyone now, even if it’s not related to an autoimmune disease, is that you have to advocate for yourself.

Sometimes, the doctors see you as a number, especially if it’s a big practice, so they can’t put in the care. I’m sure that they would want to, but they can’t.

You have to be consistent and make sure your voice is heard. I think with a lot of autoimmune diseases, doctors will say, “I don’t see that in your results.” Just because it’s not on your results doesn’t mean you’re not in pain.

Advocate for yourself no matter how hard it is and no matter how much you get pushed back. If you get pushed back to the point where you’re not comfortable, then find another doctor, which is what my mom and I ended up doing.

In addition to advocating for yourself, what other tips do you have for those just starting treatment?

Listen to your body because, surprisingly enough, our bodies tell us everything.

One thing I just learned is to get a rheumatologist. The rheumatologist that I have has changed my entire journey.

What led you to become involved with Bezzy?

I know how hard it was when I initially got diagnosed. I would go on Instagram and search the hashtag #CrohnsDisease and find people and follow them. And that was the best way to find community. I even have Instagram friends that I’ve never met before. We all have Crohn’s disease and check on each other.

When Bezzy came along, I thought, “This is great. It’s a whole app for you.” I was asked to be an ambassador. It’s really great.

One story that I remember was that I saw a young lady post in a Bezzy forum that she was trying to find balance in navigating her health and work, but her manager was not understanding. That’s something that I’ve dealt with as well.

I replied to the message, and we went back and forth about how I was able to deal with it, going to HR and through different channels. I felt like it was impactful, and that is why I’m on Bezzy — so that I can help.

Everyone needs community. I was always told that God created us to be in a community. If you are alone in it, everything is so much harder. You don’t have anyone to vent to or to bounce ideas off of. You don’t have the kind of support that you need.

When you join the Bezzy community, you meet people who are not judging you. These are people that may be going through the same thing that you are. If anyone understands, they would. It’s like-minded people.

At the same time, the mental health part can be very heavy. If you’re dealing with mental health issues along with an illness, that can be very challenging. That was a big challenge that I found when trying to manage advocacy. I found that balancing advocacy for others while managing my own health issues was a big challenge. You also need to be mindful of listening to yourself, listening to what you need, and being able to show up fully.