Imposter Syndrome Being Healthy

By: Isabela Hernandez

I was diagnosed with IBD when I was three, specifically with ulcerative colitis. When I look back at my life, there is not a time where I do not remember constantly living and dealing with my chronic illness. When I think about my childhood, the first thing I think of is being sick. Living with illness means we deal with an extra set of emotions and priorities that a lot of the world does not have to. Medicines, appointments, refills, procedures, and pain immediately flood my brain the minute I wake up in the morning. It is something we all deal with and try to integrate as best we can into our daily life.

Medicines, appointments, refills, procedures, and pain immediately flood my brain the minute I wake up in the morning.

As I grew up, in a strange and twisted way, I started to feel comfort being sick. Hospitals felt like home. Walking into doctor’s office felt more normal to me than walking into school. Over time, I felt this intense solace within being sick and for some reason, started to feel uncomfortable being healthy. Being sick was MY normal, so what was being healthy? Around the time I was 11 or 12, I was put on an experimental treatment that allowed me to stay in “remission” until I was 19. I put remission in quotes because it does not mean the disease is done and over. We still deal with medications, appointment, mild procedures, and mild symptoms. In these seven years where my disease had toned down, every day I woke up with this feeling that being somewhat healthy was wrong. I knew how to be sick. I was good at it. But, I had no idea how to deal with anything being in remission. I had a serious case of imposter syndrome these years and felt this extreme anxiety that in any moment, I was going to go back into my comfort zone of flaring, something I had endured for so long that it felt normal.

It is not fair that we spend so much more time in sickness than in health, that now sickness is our normal.

Not a lot of people mention that although flaring IS the worst part of having IBD, being in remission doesn’t mean life is instantly easy. It comes with a whole new set of fears and anxieties about how to go back to “normal” life. What is normal life for us when in remission? It is very confusing and something I still try to figure out on the daily. It is not fair that we spend so much more time in sickness than in health, that now sickness is our normal. It is our life. But what I have come to realize is that my sickness is NOT who I am. It has definitely shaped many parts of my personality and how I have become who I am now, but it is not the biggest and most defining part of who I am. I used to think that my IBD was who I am and that is it. It is definitely not, and we are just the people that our sickness has shaped us to be. I know that every day is a struggle, in remission or in a flare. I recognize that and actively try to remind myself that even though I feel comfort being sick, it is NOT normal. It just makes us all stronger.

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 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.

Digestive Disease Week 2022 and the Need for More Patient Voices

By Mara Shapiro from the U.S.

I had the privilege of attending Digestive Disease Week 2022 in person in San Diego at the end of May. I attended the conference as a member of the press for MD / alert (my employer). In addition to attending live sessions, writing articles, and interviewing doctors to create content as a medical journalist for my physician-oriented publication, I was also attending the conference through the lens of an IBD patient advocate.

This was my first time attending a medical conference, and it was a truly eye-opening experience not only professionally but personally. Getting to witness the excitement and gravitas of a major scientific gathering of top gastroenterologists from around the world was thrilling. Meeting fellow CCYAN patient advocates and CCYAN supporters was uplifting and rewarding. It is challenging to find enough adjectives for “excitement” as I describe all the highlights. I was very much like a “kid in a candy store” getting to be a part of the DDW experience.

However, I would be amiss to not mention the imbalance I felt as an IBD patient at a conference focusing so heavily on IBD research and scientific innovation. I, an IBD patient and the subject of most of these sessions and presented research, felt like my experiences were not being accurately represented. I felt lost in a slog of late breaking data and clinical trial endpoints. Where were the patient voices? How come patient narratives were not being presented? Why, in a sea of thousands of IBDologists (as they call themselves on #GITwitter), did I feel so alone?

I have to believe that there is a way to merge scientific discovery and research with patient advocacy, combine the clinician voice with the patient voice, and reach a collaborative understanding of what it means to live with IBD. So often in medicine, the patient’s experience gets forgotten or overshadowed by clinical research and treatment algorithms. Therefore, when patients do get a chance to share their story, it is often given a secondary stage or lesser attention.

What could happen if patient stories were used to aid in the contextualization of all medical research presented at these conferences?

I think we could create a discourse that is not just productive to clinicians and scientists, but that resonates with patients, the very focus and backbone of all this research. We can improve this disconnect. Patients should be able to recognize themselves in the research being presented about their disease.

Advice for clinicians and patients

For clinicians:

• Please continue to support patient advocacy efforts such as CCYAN.

• Continue to listen to and support your patients and their lived experiences of chronic illness.

• Consider implementing more patient-reported outcomes and qualitative measures into your research.

• Engage and network with patient advocates at conferences.

For fellow patients:

• Continue sharing your story.

• Remember that there is room for you at these conferences, and don’t be afraid to find your voice in these settings.

Postpartum Anxiety & IBD

By: Dr. Fasika Teferra

Did you know that women with IBD are at a higher risk of developing new-onset mental health disorders in the perinatal period? [1] Not every pregnancy, birth, and postpartum experience is all happy and bright. One of the most neglected topics that should take the spotlight during pregnancy follow-up is postpartum depression and anxiety.

There is a whole spectrum of mental illness and mental health, and that holds true for postpartum depression and anxiety. I do not attribute my late recognition of postpartum anxiety to a lack of knowledge because I am a medical doctor, but rather, it is due to ignorance. I didn’t think that having some of the symptoms I had was that big of a deal. I was told as a first-time mom, I would worry about everything, but I didn’t stop and think to what extent that was normal. Thankfully, I had a very subtle experience and found some things I could do to catch myself when I am worrying too much. Meditation and breathing techniques had been quite successful.

Although I was able to finally recognize it, it was already months after my delivery. As a first time mom, I read through all the blogs I could find and all the youtube videos I could discover. They taught me about how to pack my hospital bags, what kinds of cloths to wear and things to bring for your baby to list a few. But there were none that I came across that prepared me for what would happen after we leave the hospital and start our lives with our newest family member. It never even crossed my mind to watch out for something like this or even discuss it with my husband. It just isn’t being talked about enough yet.

There are so many mothers who struggled with this behind closed doors and some who have passed away because of this. I want to do my part by raising awareness to this critical issue of motherhood. There is still more that needs to be done. It is not shameful to be experiencing it, and it is certainly okay to ask for help!

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1.     Vigod SN, Kurdyak P, Brown HK, Nguyen GC, Targownik L, Seow C, Benchimol EI. A5 FIRST-ONSET PSYCHIATRIC DISORDERS IN PREGNANT AND POST-PARTUM WOMEN WITH INFLAMMATORY BOWEL DISEASE IN ONTARIO, CANADA: A POPULATION-BASED STUDY. Journal of the Canadian Association of Gastroenterology. 2018 Feb;1(suppl_2):7-8.

My Journey as an International Student

By: Maalvika Bhuvansunder

Living on your own in a new and beautiful country sounds like one of the best things that could happen. For individuals with a lifelong debilitating illness like IBD, it can be extremely scary to live alone. The independence could come at a cost as there is a lot that could go wrong, but there is also so much that can go right!

My journey began with a lot of uncertainty, all these questions: Should I even be doing this? Would I survive without my parents there? What do I do if I have a flare? How would I manage cooking when in flare, and so many more. I had never even slept over at a friend's place since the diagnosis, as my home was my haven, let alone move to a completely different country! This was when my parents stepped in and explained to me, this was my dream to go to the UK and to pursue it no matter what. To make things easier, my dad travelled with me to the UK and helped me settle in. 

One of my biggest fears going in was, how would I make friends with this condition, would I even have the energy to make new friends? I decided to keep my fears aside and to be candid about my condition. It was not worth it for me to make friends who would not understand my situation, and I’d rather not have such friends. Being candid truly paid off in the best way possible! The friends I made there were understanding of my condition and acknowledged that with this condition, there are certain limits. They always found a Crohn's friendly alternative for us to do and never made me feel inferior. I remember having one of the worst flares I had experienced there and being worried about how was I going to tackle this. Let me tell you all that it was the moment after the flare that gave me the confidence that I GOT THIS! I survived a flare alone for the first time, and although it seems weird that something like this made me so happy, that’s what I was: happy. My friends who were in the UK constantly checked up on me and so did my new ones. It gave a sense of relief that although, to a large extent, I have to deal with this alone, I had people who I could turn to at such times.

Just when I thought I got this and I can handle everything, the biggest crisis we all faced hit, the PANDEMIC. I had plans to go back home, but the flights were suspended. I was in shortage of medicines and every supermarket was in shortage of food. I genuinely did not know how I was going to survive this. Calling home and crying about it my mom gave me the best advice, either I can cry at this situation or see how to manage the crisis. I contacted all the nearest clinics and found to my relief that the one closest to me was open. The first thing I did was meet the doctor and stock up on the meds. As for the food, well, Mom to the rescue. Within a day, she couriered all necessary items and made sure I had enough stock to last me for months. Another thing that helped me get through this was my friend. She was studying in another city in the UK, and we decided the best thing to do was to be together during this time. Together, we made sure to make the best of the situation and be each other's support at that time. She was a lifesaver! I do not think I could have survived the pandemic on my own.

IBD had taken a lot away from me, but I am glad I took this step despite all the fear and apprehension. Living in a new country turned out to be the best decision of my life. I got to pursue what I had always wanted to and learned a lot about myself. This experience was needed for me to have the confidence that I can manage things on my own.

There are a few simple steps one can take to make sure our journey in a new country goes smoothly. In collaboration with one of the fellows, we are coming up with a handbook containing useful information for anyone deciding to move to a different place for their studies. Hopefully, you all have the same amazing experience I did!

Friendship and IBD: Know when to not give advice

By Varada Srivastava from India

Photo by Helena Lopes from Pexels.

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.

To Anyone Who’s Been Called a “Difficult Patient”

By: Carina Diaz

My experience with getting a diagnosis and how it still affects me today.

This summer will be my ten year anniversary of having Crohn’s Disease, and throughout the years, I’ve been told the same phrase over and over again by many doctors: “You’re a difficult patient.” 

Hearing this since the age of 18 has been hard on my mental health. I’ve internalized those words and blamed myself for the state of my body. I thought that my symptoms being out of control was because I ate something that I should’ve have (I can’t resist pasta or cheese), I was thinking too negatively, or maybe it was just karma for something I did wrong. But none of that is true.

This is for anyone who has also been told that they’re a hard case, a real head scratcher if you will, as my ostomy nurse tells me. I’m going to tell you the words I wish someone would’ve told me: It’s not your fault. You did nothing to deserve this. You aren’t being punished (although it can definitely feels that way at times). 

I used to always look for a reason for why I was going through this. Maybe by having an explanation, I would feel better about my situation. I wanted something to blame. I wanted to be able to direct my anger towards something more tangible. I was craving to have some level of peace or stability. Getting diagnosed felt like my world was ending.

I was having abnormal symptoms for just a few months. I had to go to the bathroom frequently and having a bowel movement was very painful. I would try to avoid food as much as possible, because food meant having to poop and pooping meant pain. When my mom confronted me about skipping dinner and learned about what I was going through, she took me to my primary care doctor, which led to getting a referral for a gastroenterologist. I thought I would be told what was wrong with me, given medicine to treat it, and that everything would fine once again. That had always been my experience with doctors. I had always gotten answers and something to help. I didn’t know that there were things that doctors couldn’t fix or at the very least, have answers for. Getting a diagnosis meant I could no longer ignore how my body was feeling.

I didn’t know what was realistic for me to want out of life anymore. Would I be able to travel, have kids, or even live on my own? My doctor didn’t seem to take my age into account when he told me the results of my colonoscopy and endoscopy. I was finishing high school and getting ready to begin college. I was overwhelmed with the possibility of not being able to keep up with my peers, of not being normal. 

Hearing this since the age of 18 has been hard on my mental health. I’ve internalized those words and blamed myself for the state of my body.

The language that doctors use, whether or not it’s intentional, often puts the blame on the patient. “I don’t know what to do with you.” “You’ve failed this medication.” “I’m referring you to someone else. I can’t help you.” This has been so harmful to my mental health. It made me think I had done this to myself. At the end of every day, my mind would race through all the possible factors: I wasn’t managing my stress levels, I ate something that I shouldn’t have, I didn’t check the ingredients in what I ate thoroughly enough, I wasn’t taking the right supplements, or I needed to try another diet. For years, I picked apart my thoughts and actions. I dealt with a lot of toxic positivity from family. As well meaning as it may have been, it just fed into blaming myself. 

If you can relate to my experience or have been through it yourself, I hope you’ve been able to find comfort and support in community. It’s what organizations like CCYAN are here for. You’re not alone, you’re not to blame, and there are people out there who understand what you’re going through. I hope that knowing you aren’t alone brings you a bit of comfort. 

A Post-Colonoscopy Reflection

By Mara Shapiro from the United States

Featured photo by Scott Webb from Pexels.

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Colonoscopies and endoscopies or “scopes” as I like to refer to them, quickly become a part of our lives as inflammatory bowel disease (IBD) patients. Everyone and their doctors’ are different, but most of us will get scoped every year or two for the rest of our lives. For pediatric and young adult patients with IBD, that can be a daunting realization. Even though they aren’t a major surgical procedure, the prep is torture, and it is still a day or two we need to spend away from school or work at the hospital and then recovering. It’s a lot. Scopes can become a huge source of stress and anxiety, they certainly are for me.

I just got my yearly scopes and it was definitely an experience I won’t forget. Between chugging Suprep at 4 am, wearing a diaper for the drive to the hospital, and then going into an adrenal crisis at home following anesthesia, this was an experience for the books. Like with other recent parts of my chronic illness journey, I’ve been trying to be more mindful of all these difficult experiences and what I can learn about myself and about life as a result. Here are some of my reflections from my latest scopes and from where my Crohn’s disease is at in general. I hope these reflections can spark some new insights for you as well.

I am stronger than I think.

For me, chronic illness is a constant reminder that I can do hard things. I can do hard things that previously terrified me. Not only can I do these hard things, but I can excel and come out the other end a stronger and more confident person. I try to go into big appointments, procedures (big or small), and flare-ups with the mindset that I am stronger than I think and know that I have what it takes to make it through. This is how I try to be positive and optimistic. I’m not perfect! I oftentimes struggle with negative self-talk and we are all entitled to feel bad for ourselves on occasion, but the difference is knowing deep down that YOU CAN DO THIS and returning to a similar positive mantra especially when things are tough. I went into these scopes with the mantra that “I am stronger than I think” and “I can do hard things” and I survived and I’m proud of myself for getting through them with such a positive mindset.

It’s all about the mindset.

Over the past year, I have really focused a lot of my energy on my mindset and the narratives I am telling myself about what’s going on around me. I have found that being in control of my mindset, and how I feel and view what’s happening, has allowed me to create a much healthier relationship with my chronic illness(es). For example, I went into these procedures with the mindset that: This is going to be hard, I’m going to hate it, but I can do it because I can do hard things. I need to do this for my present and future health. This mindset that I am suffering for a few days for information that will help my doctors and I better control my IBD was very humbling for me and gave me that extra motivation to chug that last gulp of Suprep.

I know my body best.

In addition to having Crohn’s I also have Addison’s disease, a form of adrenal insufficiency where my adrenal glands don’t produce any cortisol (our body's natural stress hormone needed for most of our bodily function). Since January 2022 I have been on a cortisol pump which allows me to get a 24/7 continuous subcutaneously infusion of cortisol in a way that closely mimics the circadian rhythm pattern of a healthy person’s cortisol cycle. This treatment has been life-saving and given me my life back in remarkable ways that are hard to express. Having surgery or anytime my body is under intense periods of physical stress can be dangerous because my body does not naturally increase cortisol production in response to stress the same way a healthy person does. I need to manually try to guess how much extra cortisol I need and also increase my dose for a few days or longer. This was my first time going under anesthesia since having Addison’s disease. Long story short, the anesthesia team did not follow the protocol my endocrinologist wrote out and I ended up going into an adrenal crisis within an hour or two of returning home after the procedure. I am very thankful for my intuition and my dad’s help - we were able to quickly increase my cortisol pump rate and within a few hours, I stabilized. Thankful is the only way to describe how I feel, as this situation could have easily ended differently. Especially after this incident, I always know that I know my body best.

Remission is not a cure.

Thankful is also how I feel that my scopes showed no signs of active disease. Stelara is continuing to work wonders for my Crohn’s disease. However, even though I am in “endoscopic remission”, I am still not symptom-free and there’s a common misconception that being in remission means you’re cured and good as new. I hope in time I will become one of those patients who forget they have IBD, but for now, even though my ileal ulcers have begun to heal, I still have just as many bad days as good ones.

I have Crohn’s but it doesn’t have me.

This one is a bit cheesy but throughout the course of these procedures, I realized that I am in control of my disease. By in control, I mean that I have the power to decide how much my disease impacts my life regardless of how much power and control it tries to take from me. Even on the days when I’m in a lot of pain and not sure how I’ll be able to get more than a few feet from the bathroom, I am still in control of how I let that affect me. My disease is not my entire identity nor my self-worth, it is just a part of me. I have Crohn’s and it’s a huge part of who I am and how I interact with the world, but it is not my entire world. There’s a lot of strength to be found in being able to reclaim some of the power and control that this disease has previously had over me.

My Journey with Exercise and IBD

By: Isabela Hernandez

Exercise can be a sensitive topic for people with IBD. For me, diagnosed with ulcerative colitis early on in my childhood, I never consistently played a sport growing up due to flares and frequent hospital visits. Little did I know that this inexperience would shape my relationship for years to come. People subconsciously implement exercise as a basic part of their everyday life throughout childhood. Because of this, as adults, they’ve developed a sense of comfortability with the idea of exercise. But for those with IBD, Saturday soccer games or just a run around the block is not a top priority. Getting into remission is always the goal and once it happens, the need to exercise is one of the many things that follows. This often leads to frustration on what to do and how to feel comfortable in the gym or at home trying to better your physical health. I never realized how dysfunctional my relationship with exercise was until I got to college.

College was the first time I began to exercise consistently without quitting. I was not forced to deal with severe sickness or constant hospitalizations, which led me to explore my ability to exercise. Gradually, I was able to learn exactly what I enjoyed doing to get my heart rate up. The journey of finding a relationship with exercise is an individual process. It is different for everyone and takes time. Personally, my life changed when I discovered strength training.

I’m sure many with IBD can understand what it is like to feel the relentlessness of feeling physically weak. I never once felt strong, and especially while flaring, the physical weakness I sometimes experienced was debilitating. I was hesitant at first to enter the gym, since I had no idea what I was doing. I was numb at the thought of embarrassing myself trying to exercise. This is a common fear that many have and it’s something that an individual must push through. In living with a chronic condition, there will always be times when we feel weak, but it is our responsibility to power through and uncover moments within exercising that make us stronger. As time progressed, my level of comfort in the gym grew, and my idea of what strength was began to shift. Not only was I physically feeling stronger than I ever had in my life, but more so, I mentally grew stronger. I really do believe that working on my physical health catapulted me on a journey to finding strength everywhere, not just in the gym. However, not every journey is perfect.

The more time I spent strength training, the more I began to get frustrated trying to build muscle. An uncommonly known fact about IBD for some is that individuals with UC or Crohn’s typically have a harder time putting on muscle. Sarcopenia is the reduction of muscle mass/strength and it exists in roughly 52% of Crohn’s patients and 37% of UC patients. [1] This is still an ongoing and evolving area of research, but it explains why for some IBD patients, it is extremely difficult to put on muscle. Many things drive sarcopenia in IBD patients, including chronic inflammation, vitamin D deficiency, adiposity, malabsorption and the dysregulation of the muscle microbiome axis. [1] Protein intake/absorption is usually reduced in IBD patients, so it is typically recommended that higher protein intake could serve as a solid attempt to prevent muscle loss. [1] This could result in a lot of frustration for IBD patients, and it needs to be recognized that it is not you; it is the IBD.

The science behind this phenomenon is very complicated and ever evolving. The reason I highlight this fact is that if you are like me and are on your journey with exercise, the frustrating roadblocks you are experiencing specific to exercise are not uncommon. Keep going and find what makes you feel good physically. For me personally, it was strength training, and my roadblock was the struggle to build muscle. Nevertheless, I will continue to do what makes me feel good while trusting the process and recognizing that IBD will always affect every area of my life. Whether we realize it or not, our IBD will always be there and try to prevent us from progressing in certain areas that we didn’t even realize it would affect. We must accept this and move on without letting it stop us. It is extremely important to talk to your doctor about the role of exercise in your life and what your body is capable of doing in the moment, taking into consideration disease activity. I hope that every person with IBD finds their own form of exercise that makes them feel happy, at peace, and above all, strong!

References:

1.         Dhaliwal A, Quinlan JI, Overthrow K, et al. Sarcopenia in Inflammatory Bowel Disease: A Narrative Overview. Nutrients. 2021;13(2):656. doi:10.3390/nu13020656

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 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.

Pregnancy & IBD: My Experience

By: Dr. Fasika Teferra

Pregnancy is a gift from above. I believe when a child is born, so is the mother. I am a completely different person now than I was a year ago. There is no one specific time, but the whole pregnancy and childbirth experience changed me to the core. The journey was not perfect; I had so many lows, as I had highs. Although it is difficult, I wouldn’t change a thing, and here is why.

I had always wanted to have a baby at an early age. I was never taught what it means to be a mother nor what a child expects of you; they don’t teach that in med schools. It was fair to say that I never got the proper guidance from anywhere, but I believe it is like that for most moms. We don’t know what we are getting into until we are actually in it.

The first time I felt this was when I was in labor. The word I could use to explain that moment is stuck. I felt stuck because I couldn’t do anything to make the pain go away. It reminded me of the awful pain I had around the time I was first diagnosed with Crohn’s Disease. I couldn’t take any medicine to make it stop (there were no epidurals in Ethiopia when I gave birth). I was not in control, which is something I was accustomed to. All the labor related videos I watched and the breathing technics by doulas didn’t help because I was in over my head. Labor sucked.

But my pregnancy journey was amazing. I loved seeing my belly grow, feeling my baby kicks, assembling his crib and getting him cute outfits. Although the fear of relapsing still lingered at the back of my mind, it was easy to set it aside and enjoy the process.

I am well aware that I was able to stay in remission throughout my pregnancy and that could have contributed to me having a medicine free throughout my pregnancy. I experimented with a lot of diet and meditation just to make sure I stay in remission. As each person’s journey with IBD is different, I encourage you to work with your doctor to find out when it is best to have a baby. I hope that for anyone reading this article that may want to be a mother someday but is scared, I am here to tell you that you shouldn’t be. Pregnancy and delivery, whether you have IBD or not, is a rollercoaster ride, but one that is worth it in the end.

Grief with IBD: Remember to Turn on the Light

By: Maalvika Bhuvansunder

Grief is a term generally associated with the loss of a loved one. In this scenario, the loved one is me. Grief for me was losing the person I used to be before my Crohn’s. I was always a happy and vibrant kid who would just never stop talking, never one to make plans beforehand, and was very flexible. I used to take life easy and would never overthink any scenario. I became a completely different person, to be precise, the exact opposite of who I was before. I’m always overthinking, moody, and can not function without a plan. It felt that instead of being a part of my life, Crohn's became my life. Activities that used to bring me happiness like dancing and reading, were no longer of interest to me. I used to love going out with family and friends, but the thought of going out scared me. I felt the safest inside my house, having minimum interaction with the outside world. This “safety”, however, did not bring me any happiness. I was constantly miserable even when I was not in a flare. My mood started reflecting on my behavior with others. I was constantly snapping at my family and getting angry for no reason. I became this person that I could not recognize. I remember distancing myself from my friends and internally blaming them for the distance.  

After a struggle of three years, I reached a short-term remission in 2019. The timing could not have been any better, as I was relocating to Manchester to pursue my Master's. For my Master's thesis, I was researching grief and suicide bereavement. That is when I had my eureka moment! The themes that emerged from the research were isolation, anger, guilt, and loss of interest in activities that once used to bring them happiness. During this research I realized these were the exact emotions I had felt. Upon self-reflection, it made sense that, in a way, what I experienced was a type of grief. Grieving the girl that used to get happy at the smallest of things, the one who used to take life as a beautiful journey, and the girl who never used to get angry. I was using unhealthy coping strategies to make up for the grief I felt from losing the person I was before.  Along with grieving the past me, I was grieving the future. All these questions of will I be able to work, find someone who accepts my condition, and a lot of other things. I remembered one of my research participants expressing how much she lost in the present day by worrying about her past and future; it was completely futile. This type of grief is something I am sure many individuals with a life-long illness might feel but would not have realized what it meant.

““Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.””

— Albus Dumbledore, 'Harry Potter And The Prisoner Of Azkaban'

At that particular moment, this quote from Harry Potter resonated with me: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.” I was so focused on hating my situation that I forgot to switch on the light in my life, to appreciate those that stuck by me. Crohn's may have played a part in this internalized grief of mine, but it was me that refused to see the good things. Yes, I am no longer the girl I used to be; however, Crohn's made me a much more resilient and empathetic individual. It instilled in me the sense of being nonjudgemental and understanding others struggles. I started to appreciate my body for working its best to survive despite the condition. I was grateful for my family and friends that stuck by me despite my infuriating behavior. It was an eye-opening moment for me.

I made a promise to myself to start doing the things that once bought me happiness, no matter how small they are. We cannot change the past, nor can we predict the future. Why waste away our present amidst this?! It is very natural to grieve the things we lost due to our illness and what we think we might miss out in the future. At such times, I stand in my balcony and remember to switch on the lights in my present life and find happiness in the smallest moments. When we have an illness that takes a huge toll on our body, we must make sure that on the days we do feel okay to make the most of it.