Dealing with Anxiety from Medical Tests and Procedures with IBD

By Varada Srivastava (India)

I have been in remission for the past 2 years, but even in remission I am required to regularly get blood and stool tests done. Recently one of my tests showed I had inflammation and I realized even after years, I experience the same type of anxiety about it. I've broken it down into 3 stages:

My Three Stages of Anxiety

1. Anxiety of getting the test and/or procedure done

Tests and/or procedures, like an MRI or colonoscopy, are infamous for having a really difficult prep. I personally get very worried whenever the doctor recommends I should get a colonoscopy or MRI enterography done. The prep for both these tests produces immense amounts of anxiety for me. The procedure in itself is very painful as well. Unfortunately, for people with IBD these tests are a must to see the inflammation of the digestive tract.

2. Anxiety about the results

Getting anxious about the results is very common whether you're in remission or dealing with a flare. Being scared about the worst case scenario, thinking about how much work or school you’ll be missing if the test results are bad, wondering whether the medication has stopped working are all fears that may come up. I think this is the most common and debilitating type of anxiety to feel. Working through it seems difficult especially without the support of friends and family.

3. Anxiety about life after the results

Hopefully the results we get are positive and that's the end of the anxiety cycle, at least till next time. Unfortunately if the result is bad, all the questions we ask ourselves while spiraling become very real issues that need to be addressed. Figuring out medical insurance issues, getting leave from work or school, finding ways to get out of social events are all obstacles that we need to overcome. The main question that arises is how to deal with this cycle and is there any way to break it? I have not yet discovered a way in which I do not engage in this cycle but I have found little ways to manage it better.

How I have learned to manage anxiety better

1. Talk to your family and friends

This is the most obvious but also the most effective way to exit an anxiety spiral. Find someone you trust and confide in them. Tell them about your fears, no matter how ridiculous or unrealistic they sound.

2. Support group or therapy

If you find it difficult to talk to your family about this or are concerned about worrying them. Try to find a support group or a therapist. One of the benefits of joining a support group will always be that you’ll be surrounded by people who regularly go through something similar. There are many wonderful support groups that can be found online as well!

3. Focus on self care

Make yourself a priority. Eat good food and drink plenty of water, meditate as often as possible, journal, go out for a walk, play with your pet, facetime your friends, watch your favorite tv series. Try to engage in activities that you enjoy as much as possible.

Find what works best for you!

Featured photo by Pixabay

Working Full Time with IBD

By Carina Diaz (Texas, U.S.A.)

All I remember wanting when I was really sick was to have my own apartment and a full time job like my friends. I’ve been working a 9 to 5 job for almost three years now and have fully experienced the pros and cons. What I didn’t realize until I started was that managing my IBD is a job within itself. Balancing the two can be very exhausting.

The accessibility that remote work provides has really changed the game.

Deciding to disclose that you have IBD to your employer is a difficult and personal choice. I have been very lucky that at my current and previous jobs, I’ve felt comfortable talking about my illness. Not only that, but COVID-19 has made the world embrace remote work, and as someone who deals with fatigue regularly, this has helped me a ton. I don’t have the energy to get up every day, make breakfast, shower, and commute to work. The accessibility that remote work provides has really changed the game.

It can be tricky in an interview to gauge work culture, but I’ve found that it’s very important to ask as many questions as possible on it. Below is a list of some examples:

1. How would you describe the work environment?

2. What is your management style?

3. Which company value do you more relate to and why?

4. What are the qualities of the top performing employees?

5. What does work/life balance look like at your company?

These questions can help give a clearer picture on what the company is expecting from their employees. Do they micromanage? Or do they just care that you get the job done? Do they work more than 40 hours a week? Are the top performers workaholics? What are the benefits and perks of working there? The answers will reveal a lot.

It can be tricky in an interview to gauge work culture, but I’ve found that it’s very important to ask as many questions as possible on it.

Another perk of my current role is having unlimited PTO. If I feel like I need a day off to rest, I’m able to do so. It’s not just a nice vacation perk. Organizations like Chronically Capable are great resources to find jobs that have flexibility. It helps to start your job search with a list of “must have” qualities that you’re not willing to compromise on. Tiktok has also been a really good resource on building a resume, interview tips, and how to plan a job search.

A “must have” on my list is being open about having IBD in the interview process to gauge how it’ll be received. I mention having monthly doctor appointments, but that this wouldn’t get in the way of finishing tasks. Most companies I’ve interviewed with have said that’s no problem, and I’ve been very lucky in that regard, but not every organization will be that way. 

There are laws in place to prohibit discrimination, but unfortunately not every employer is willing to be flexible and offer appropriate accommodations. I feel very lucky to have positive experiences when joining the work force so there are good employers out there! For me, being open about my illness is a way of advocating for myself and ensuring that my needs are met.

Traveling with your IBD Medications

By Varada Srivastava (India)

Recently I travelled with my biologics for the first time internationally. The process of preparing for it, going through immigration, security, and ensuring the medication temperature was maintained was a long and confusing procedure. Through this article, I hope to help anyone planning to travel in the near future.

Since most countries started opening their borders recently after COVID-19 one of the main concerns of anyone with IBD is travelling with medication. Especially since many laws have been changed. I travelled from India to Japan at the beginning of July 2022 and this was my experience.

1. Research the medical laws of the country you’re visiting.

Japan has strict laws when it comes to opioids. My pain medication contains Tramadol so I asked my doctor to mention the exact amount of pills I’d be carrying there. This is an image of my prescription which mentions the manufacturer, dosage, the number of injections I’m carrying and it also mentions that it is a self-injection. In some countries, it is important to mention that Humira/biosimilars of Humira are supposed to be self-injected.

2. Prepare prescription documents before the flight.

It's essential to make sure all documentation regarding your disease and medications is available. The more detailed it is, the easier security checks will be.

3. Talk to the Airlines.

Most airlines allow injections to be carried on board. However, it is best to inform them beforehand. Also, let them know whether you’ll need to use the injection on the flight. My flight was booked with ANA airlines and they were very understanding about the situation.

4. Storage conditions.

Humira and other biosimilars need a maintained temperature of 2-8 degrees celsius. Make sure to carry them in an ice box or vaccine carrier. Most airlines don't keep these medications in their refrigerator due to hygiene reasons but you can ask the flight attendants for ice while on the plane.

5. Security checks.

Many people travel with injections whether it's biologics or insulin. Therefore the security is well versed in this. Check whether your medication can pass through X-ray scanners beforehand and keep the prescription handy.

It's overwhelming and scary to travel when you have IBD, hopefully following these steps might make your next travel a little bit easier.

Featured photo by Oleksandr Pidvalnyi from Pexels.

Embracing the term "Disability"

By Natasha Kacharia (U.S.A.)

Last year, I was applying for an internship. I do not remember what internship but that is not the point. This internship, like most, had a voluntary self-identification of disability section that goes on to list what a disability may include: blindness, deafness, cancer, etc. However, this list was different because it included gastrointestinal disorders.

I know. I know. The lists of disabilities are usually prefaced with the phrase: disabilities may include but are not limited too. Yet, the fact that this internship specifically bulleted my condition put an unexplainable smile on my face.

You see, the voluntary self-identification of disability section always stressed me out. I never knew what box to check: yes, no, or I do not wish to disclose.

Screensot from the Voluntary Self-Identification of Disability form

The fortunate or unfortunate reality of living with a chronic illness is that people do not see the constant stomach cramps, the hemorrhaging of blood, the fatigue, the insomnia, the arthritis, or the nausea, and they definitely do not see the psychological effects of the disease. No, when people look at me, they see a healthy, possibly a little unfit, college student.

Thus, when the disability section inevitably comes on the application, I always wonder what box to check: yes, no, or I do not wish to disclose.

The same questions always run through my head: Does my condition qualify as a disability? Am I disabled?

Do you understand my indecisiveness now? When people think disability, I am not the person they imagine.

However, with a singular phrase – gastrointestinal disorders – the internship made me feel seen. Finally, I was free from my indecisiveness and the weights of my secret. For a singular moment, my invisible illness did not feel so invisible anymore.

Yet, I still had trouble identifying as disabled. Was I only disabled when I was in a flare, or can I always check the disability box? Do employers only ask for disability disclosure to engage in affirmative action for individuals with disabilities? If so, then do I have the right to check the disabled box, as having an invisible illness, I have not been actively discriminated on due to it. Meeting other people within the chronic illness community simply made me more confused; some readily embraced the term disability, while others sheered away from the term chronically ill. I met people whose illnesses were far more severe than mine and did not self-identify the term disabled, so what gave me the right? Was I being overdramatic? The fact that the people surrounded me did not recognize my struggles did not give me the space to embrace my own struggles.

But I am done. I am done with self-doubt. I may have an invisible illness, but I am done being invisible. I am ready to dance in the open, so for my next application, I am going to check yes. Yes, I have a disability.

Featured photo by Tara Winstead from Pexels.

Friendship and IBD: Know when to not give advice

By Varada Srivastava (India)

Hanging out with friends, attending parties, going to school are all things kids with Crohn's disease lose out on. You’re hospitalized or too sick to get out of bed many times, especially during the beginning stages of diagnosis. Not to mention the mental health issues that come with dealing with a chronic illness from a young age - anxiety, depression, PTSD associated with hospitalization are all too common. It can be very difficult to maintain friendships when you’re trying to survive daily life. How people react to your chronic illness is one of the pivotal points of friendship. I couldn't help but notice a pattern between the friendships I’ve maintained over the years. The common factor between them has been my friends’ ability to listen and not give unsolicited advice when I am talking about my disease. This is a quality I personally look for, however I have heard from many of my other friends who have a chronic illness that this is something they appreciate as well.

As someone who has been living with this illness for more than 6 years now, I have received my fair share of undesired advice from family, friends and random strangers. It is something that really aggravates me. Getting advice when you're trying to rant is pretty annoying in general but when you add IBD - something that is a very personal and a sensitive topic - the reaction you get can be explosive. Living with a chronic illness is tricky, most of us have figured out what works for us whether it's medicine or food after a long and painful journey. And as young adults, most of that journey is still left. One of the main reasons why some of us have such a negative reaction towards this is because it comes across as insensitive and like a privileged view on something very complicated.

This however, doesn’t mean that you don't look out for your friends with IBD. One of the foundations of a good friendship is caring for and helping out your friends. If you are a loved one of someone who suffers from a chronic illness, ironically, this is the advice I would give you:

1

Ask your friend whether this is something they are comfortable talking about. Never push them to talk about their diagnosis, medicines or journey.

2

Don't take it personally if this is something they would like to keep private. Many of us have gone through very difficult diagnosis journeys and talking about them can bring back a lot of trauma.

3

Research about the condition. Try to understand where your friend is coming from and what they struggle with on a daily basis.

4

Try not to give unsolicited advice, but do intervene if you notice them doing something that may not be in their best interest.

Having a good support system is extremely important for someone with a chronic illness. Friends give us a safe space to express and explore our emotions. Friends are, in reality, the best emotional medicine for people like us to overcome sadness and motivate us to take a leap of faith to transform our lives for the better.

Photo by Helena Lopes from Pexels.

Energy Management with a Chronic Illness

By Varada Srivastava (India)

Finding a way to manage time with a chronic illness is a complicated process. It can be frustrating to figure out the new normal when you are originally diagnosed. For people with chronic illness it can be very difficult to figure out what is physically and emotionally possible for us to do that day. There are a few theories that have come to help us cope with this.

Moreover it’s very important for people who don’t have a chronic illness to understand it.

Christine Miserando is a lupus advocate who is known for coming up with the spoon theory. According to her, the difference between being sick and being healthy is having to make choices or to consciously think about things the rest of the world doesn’t. The healthy have the luxury to live life without having to make constant choices which is something most people take for granted. People with chronic illness are given a certain amount of spoons whereas healthy people have an unlimited supply. In her story, she gave her friend 12 spoons to get through the day. Each spoon represents the amount of energy we have for a certain task. For people with chronic illness, each task is also divided into smaller tasks.

For example: wearing clothes in the morning requires a series of decisions in which we have to keep our illness in the front of our mind. If you are getting blood drawn that day, you need to make sure to not wear long sleeves; if you feel the onset of body ache, you need to wear warmer clothes. These micro calculations take up the majority of our mental space. Do I take my medicine before or after lunch? Should I just wear a summer dress to relieve the pressure on my stomach? Are my hands too sore to handle buttons? I can't do many tasks if I take pain medicine. These are only a few of the many questions we tackle everyday. Each task requires a game plan. This constant mental gymnastics is incredibly tiring.

Emmeline Olsen wrote another article for IBD New Today which focused on the pitfalls of following the spoon theory. The spoon theory is based on the loss people with chronic illness face. But according to Emmeline, having a chronic illness piles stuff onto our original to do list. She gave the analogy of a filled bucket, healthy people can fill their bucket as much or as little as they want. Having a chronic illness is like filling the bucket with stones, each time you do a task which is exclusive to people with chronic illness, a stone is added to the bucket. Having a flare is compared to having a bucket filled to the rim. The worse the disease gets, the heavier the bucket is, the more chance it has of overflowing.

Having read both these theories, I think I tend to follow a mixture of both. Right now, I'm in remission, I am able to carry a heavier bucket. Doing daily tasks is comparatively easier and the stones in my bucket are less. However during a flare when I don't have enough energy to get out of bed the thought of lugging a bucket around seems exhausting. The amount of tasks seems overwhelming. That's when I like to follow the spoon theory. It helps in breaking down everyday tasks into smaller, more manageable activities.

Dealing with a chronic illness is very subjective, while some things work for one person they might not work for others. The goal is to find what works best for you, mostly through trial and error. And while going through this process it is very important to remember to be kind and patient with yourself.

Featured photo by Pixabay.

Keeping Up with Your Care

By Isabela Hernandez (Florida, U.S.A.)

Having a chronic condition isn’t easy. It’s something that needs constant upkeep, monitoring, and attentiveness. For me, a sometimes lazy 22-year-old college student, keeping up with my care is at times the last thing I want to do. I’ve neglected to refill my prescriptions, get my labs done, and reschedule my appointments. It is not something I am trying to recommend to anyone, but the difficultly of taking care of yourself is sometimes just plain irritating and difficult.

The way I’ve justified this behavior is: if I am going to have my ulcerative colitis forever, then I can take care of this later.

It creates this toxic cycle of neglect that can lead to dangerous outcomes. Once I let this neglect and annoyance take over, it’s difficult to pull myself out of it. Sometimes my wakeup call is even a mini flare. This would happen to me because I would view my disease as this burden that I could never escape. Something that only I had to constantly maintain day in and day out, and no one else. With this mentality, there was no way I was going to stay on top of my care. I would ignore things and push appointments off as much as possible. However, after my neglect facilitated the progression of an intense flare, I realized I needed to incorporate my disease into my life in a positive way.

What helped me the most was just treating my ulcerative colitis as a class that I needed to do assignments for and keep up with.

I started to schedule things into my day and treat it as task, rather than a pestering duty that if I didn’t do it, my health would suffer. Sometimes I would even write things into my planner so I could visually see that at this hour I absolutely needed to take my medication and at that hour I needed to call my physician for follow up labs. These were small changes that helped me stay as present as possible while trying to take care of my Ulcerative Colitis. It is something easier said than done but it is okay if you sometimes feel like taking care of yourself is too much and it is too hard. It’s because it is. It’s hard, its draining, and sometimes laziness takes over.

IBD patients are fundamentally built in a way that our health is the one thing always consuming our thoughts, and at some points this mentality overwhelms the mind.

And it is ok, too, at times get angry at our disease and wonder what life would be like without it, but this does no one any good. If you’re anything like me, finding ways to schedule health tasks into your day rather than just “getting around to it” really changed how I take care of myself. It relieved stressors that would follow if I didn’t do certain things for my care and allowed me to just do the task and move on. Just remember that even on days when we don’t feel like taking care of ourselves, we are still doing the best that we can do. 

This article is sponsored by Trellus

Trellus envisions a world where every person with a chronic condition has hope and thrives. Their mission is to elevate the quality and delivery of expert-driven personalized care for people with chronic conditions by fostering resilience, cultivating learning, and connecting all partners in care.

RV Camping with Crohn’s: How I Reconnected With Nature After My Diagnosis

By Mara Shapiro (U.S.A.)

Featured photo by Nubia Navarro (nubikini) from Pexels.

“Look deeper into nature, and then you will understand everything better.”

— Albert Einstein

I’ve always found nature to be healing, and where I’ve felt the most relaxed. Previous to my Crohn’s diagnosis I was a competitive rock climber and would frequently travel to some of the best outdoor rock climbing destinations in the United States with my climbing team. It wasn’t just the act of rock climbing or spending time with some of my closest friends, it was truly the beauty, peace, and serenity of nature that made me the happiest. I found a lot of my bliss in the mountains throughout my teenage years whether it was through rock climbing, snowboarding, or hiking. 

A childhood dream of mine has been to own an RV so I could camp and enjoy nature with ease and virtually anywhere. This dream became a much more realistic goal when I was diagnosed with Crohn’s disease in July 2020. I was diagnosed at the Mayo Clinic in Rochester, Minnesota and I live in Southern California. Due to the COVID-19 pandemic, it was safer for my dad and me to drive the two and half-day nearly 2000 mile trip rather than fly (we also got to bring my best friend and Corgi companion, Morty, on this road trip). I was pretty sick at the time and relied on diapers and lots of Imodium to get through that road trip, which we did a total of twice round trip that summer. 

Every time we passed an RV or travel trailer of any kind I would point it out. We must have passed hundreds of them on the 2000 mile stretch of interstate. I would daydream about the day I would have my own RV and be able to just pull over and use my own private toilet whenever I needed it. Sitting in my Subaru Crosstrek wearing a diaper, you bet I was dreaming about all those RVers and how lucky they were to have their own toilet within arms reach. No more accidents, no more sketchy truck stop bathrooms… Of course, I dreamed of other parts of RV life too, and those daydreams helped me pass the time, a time that was full of such fear and unknown. 

Fast forward to October 2021, I have graduated college, I have an amazing full-time remote job, and I am ready to start the process of finding and buying my own RV. After months of research, I decided on a Forest River R-Pod 190. It was a perfect size, weight, and floorplan for Morty (my 2.5-year-old Corgi and travel companion) and me. In small travel trailers like mine, the bathrooms are usually very small and called a “wet bath'' where the toilet and shower are in the same space and when you shower the entire bathroom gets wet. I was lucky enough to find a floorplan with a “dry bath”, where the toilet is fully separate from the shower! For the amount of time I spend on the toilet, I knew I needed a dry bath! Add this to the list of things that “normal” people with “normal” colons don’t think about…

At the end of November 2021, I picked up my R-Pod and camped in it for the first time! The past few months have been full of a lot of trial and error, endless learning, and many moments of frustration. I have also felt so empowered by my newfound confidence and independence. I have had so many new experiences and explored beautiful new places with Morty. I have fulfilled my childhood dream and created a new hobby and source of joy that has added so much to my life. IBD and chronic illness can take a lot from us, and can often make us feel out of control. For me, finding an accessible way to camp with my RV is one way that I have taken some of that control back.

Advice for Camping (or getting back into any hobby) with IBD

Take it slow!

I’ve learned (mostly by trying to do too much too quickly) that the best way to partake in strenuous activities is to do it slowly and at your own pace. It’s easy to look around at others and match their pace, but especially when it comes to setting up a campsite there is no rush and it’s not a race. So if I need to take a break and have a snack or drink or lay down on the bed in between setting up or taking down camp then I do! Find your pace and stick to it.

Ask for help!

Asking for help can be hard, but sometimes it’s so needed! Especially with camping, 9 times out of 10 your fellow campers are super friendly and always willing to lend a hand! As a solo female camper, I am hesitant to ask for help unless I really need it, but I have learned that there are usually kind people within an earshot who are there for you. Asking for help from friends and family to help you enjoy your hobbies is also key. Especially when flaring, I’ve been able to have my dad come to assist me with some of the strenuous camping tasks so that I could still enjoy some relaxing time in nature.

Acceptance is key!

Acceptance is a spectrum and some days and in some phases of life, acceptance comes easier than others. I have really channeled my inner acceptance narrative when I go out camping. I try my best to accept things as they are and as they come and not get too frustrated when something unexpected happens or I end up being more symptomatic than I had hoped. I could be feeling sick at home so I might as well be feeling sick in my camper in nature! “It is what it is, and I’m camping,” I say with a (forced) smile when the stress starts to build. Find your acceptance and get back to your beloved hobbies!

Whether it is camping or another outdoor adventure or trying a recipe you haven’t made since your diagnosis or trying something totally new that you’ve always wanted to try, I want to encourage you all to take that leap of faith, argue with that voice in your head that’s been holding you back, and go for it!

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

IBD in College – Put it on your Resume!

By Isabela Hernandez (Florida, U.S.A.)

“It was a burden that I hated and equated as the worst part of myself. From the ages of 3 to 19, I treated it as this deep dark secret that I told no one about.”

I used to think that confident people were born confident, brave people born brave, and happy people born happy. An immature thought, but I believed characteristics like these were just naturally inherent. I convinced myself that I was just born to be sick with my IBD. It was a burden that I hated and equated as the worst part of myself. From the ages of 3 to 19, I treated it as this deep dark secret that I told no one about. For some reason, it was virtually impossible for me to tell friends about my UC and how it affected me. I kept everything to myself and never shared when I was feeling physically sick, or even worse, mentally drained. Luckily, I have a great family, an unrelenting support system that even when I didn’t want them to be, they were there for me. However, when someone with IBD goes to college, either newly diagnosed or a long-time patient, their assumptive world shatters. You’ve moved miles away from home with the most annoying friend you could ever think of, your IBD. At least that’s what I thought when I got to school. How am I going to deal with it? Am I going to tell people? Will they think I’m weird? What do I eat? What if I must go to the bathroom in class?

The questions were looming over me the minute I got to school. My fear overwhelmed me; it convinced me to believe that I would never find a way to integrate my UC into my new college life. I was fighting this mental battle against myself, and simultaneously seeking to get involved in any sort of organization at my school to feel more comfortable there. My university happens to be heavily research focused, and I was interested in the healthcare field. I decided to push myself out of my comfort zone and join a lab that focused on the one thing I knew the most about, IBD. It was there, in that moment that I felt empowered by my disease for the first time. I chose to openly use my IBD as a qualification, as an asset rather than a detriment. As time went on, I started to get more involved in other organizations that focused on IBD, such as this fellowship, that views one’s IBD as a contributing factor rather than a limiting one. I took a part of myself that I once hated and allowed it to become a distinctly unique piece of me. The transformative growth I underwent from concealing my IBD to using it to make me stand out was an unparalleled feeling.

“I am continuously seeking out ways in which I can intertwine IBD with my life, my work, and my interests.”

My biggest recommendation for anyone in college with IBD is to put IBD on your resume! Not literally, but in your own rhetorical way. Have it be your secret superpower that allows and pushes you to get involved in opportunities that reside in a world you so deeply understand. Work with nonprofits for IBD, get involved in research, or join a support group. Apply for scholarships for students with IBD. If you don’t happen to find any opportunities for students with IBD, start some! Start a support group or start a club exclusively for college students living with IBD. Find absolutely anything that connects you to your disease, because the minute you do this, you start to not only view your disease, but your potential, in a different light. If we as IBD patients are going to live with this forever, we might as well use it in a way that gives us the upper hand. Live a life with activities that are filled with opportunities that let you be proud to be someone with a chronic condition. Four years ago, I would have never been able to muster up the confidence to talk about my disease in the way I do. Today, the version of me that exists cannot stop talking about it. I am continuously seeking out ways in which I can intertwine IBD with my life, my work, and my interests. Every day, reaffirming that my IBD is the part of myself I am most proud of. Don’t let IBD hold you back from finding opportunities that make you feel fulfilled in a way you might’ve never known existed; use it to your advantage. It is a piece, that once embraced, can be advantageously employed in a surprisingly positive way.

Storytelling for self-growth

By Fasika Teferra, M.D. (Ethiopia)

Have you ever wondered why someone shares their stories with strangers? Regardless of the outlets people use to tell their stories, we see storytelling get used as a catalyst for change. It is a tool that most change makers are using today; that was my initial motivation to start telling my story, until I learned the true potential of storytelling. I was just beginning my fourth year of medical school. With the stress of the upcoming qualifying exam and family moving away for work, I thought the abdominal pain I had started to experience was just anxiety. Although I am fully aware of Crohn’s Disease and its symptoms, I tried to get quick solutions to resolve the symptoms.

“Regardless of the outlets people use to tell their stories, we see storytelling get used as a catalyst for change.”

From a young age, I was told to pull myself together and not show vulnerability, which was why I suffered for eight months before getting my diagnosis. I knew what the disease was, the medications I needed to take, and that it was a chronic illness with no cure. But accepting that was one of the hardest things I ever had to do. A lot of factors played in truly accepting my diagnosis and make the decision to be more knowledgable as an IBD patient, but the major one was reading stories of other IBD patients. It opened up my mind to the possibility that I could lead a normal life. That was why I started to share my story, to be an inspiration to others.

“From a young age, I was told to pull myself together and not show vulnerability, which was why I suffered for eight months before getting my diagnosis.”

Living in Ethiopia, where most doctors state that IBD is rare, I knew I needed to speak up. I needed patients to know that they are not alone and I needed to communicate with my medical community that it is not so rare. I am glad I decided to be open about telling what I went through and how I am coping with IBD and it is not for the reasons you think. Sure, I am grateful to be able to make a change; I am happy my story is inspirational to other Ethiopians and non-Ethiopians alike. However, I am so thankful for what storytelling did for me.

“Through storytelling, I learned acceptance.”

I was not in remission when I started nor did I had a clue about managing IBD as a patient. I started only 2 years into my diagnosis and did not fully accept my diagnosis at the time. Through storytelling, I learned acceptance. As I shared my story more and more, it made me want to learn more about how to manage my condition. It also helped me step back and see how far I have come because telling my story means going back from the beginning and share the how, the why, the what of each and every detail. If there is one thing I want you to takeaway from this, it is that it doesn’t matter how much you know about something, speaking about your experience is not just so others can learn from you, it is a tool to aid in self-growth and reflection. Storytelling did not change my Crohn’s Disease diagnosis or all the hardship I faced, but the story helped me, the teller, transform and grow.