My Journey with Health PTSD

By: Maalvika Bhuvansunder

World mental health day was marked on the 10th of October. In today’s world, there is a lot more awareness and acceptance regarding mental health concerns. However, not much is spoken about the relationship between having a physical illness and its impact on one’s mental health, or vice versa. I have always been very vocal about accepting and understanding mental illness and aim to be an advocate for those going through it. Being a student of psychology and hopefully a future psychologist, I felt it was my duty to contribute to destigmatizing mental illness. What I never expected was that I would have to be my advocate as well!

2017 was a very difficult year for me, there were a lot of new changes happening, from getting my diagnosis, to learning how to cope with it. My mental health was getting affected since then itself, but I was unable to recognize those signs. During my non-flare-up days, I’d still not be calm, because subconsciously I was always expecting a relapse or something to go bad. I would constantly overthink and worry, which was very unlikely of me. I started finding comfort in anger. Since I had no control over what was happening to me, Anger was the emotion I would always resort to because being happy caused me a lot of anxiety. Whenever there was a situation that went well and made me feel happy, after a few minutes I would be filled with the dread of something going wrong. I could never make impromptu plans, and any change in routine would get me to spiral into a state of anxiety.

“Since I had no control over what was happening to me, anger was the emotion I would always resort to because being happy caused me a lot of anxiety. ”

Starting to notice that these emotions and feelings were not just stress, I did my research. I realised what I was experiencing could be Health Related Post Traumatic Stress Disorder (Health- PTSD). It is commonly seen in individuals who are going through a lifelong illness (1). This was surprising to me, as being from the mental health field, I assumed PTSD only relates to extreme trauma in life, not realizing in a way, having Crohn's was my trauma. I was experiencing the anxiety of the surgery and reports indicating a relapse, the depression of the flare-ups, the grief of losing myself, and the fear of being hospitalised. I was experiencing this more once I reached remission, which made sense as I was experiencing it post-trauma. The trauma of the pain, of not being able to eat what I love, hating the way I looked, having zero social life, and many others. We do not realise how much an illness can impact you overall. Crohn's is more than just a physical illness.

My experience made me realise how important it is to advocate for this. I took the step of seeking help and was lucky to understand the signs, albeit a bit later. However, not everybody can recognize these signs, especially as there is not much awareness about the coexisting relationship between physical and mental health. PTSD is not just limited to the most spoken-about traumas. Trauma is trauma, the magnitude of it should not be a determining factor. It is okay to ask for help and seek help. We are always going to hear comments like, “you are depressed because of this?” or “people have it worse”, but don't let that stop you from seeking help. Only we know what we are going through and have to be our advocates!

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(1)  Pietrzak, R. H., Goldstein, R. B., Southwick, S. M., & Grant, B. F. (2012). Physical health conditions associated with posttraumatic stress disorder in U.S. older adults: results from wave 2 of the National Epidemiologic Survey on Alcohol and Related Conditions. Journal of the American Geriatrics Society,60(2), 296–303. https://doi.org/10.1111/j.1532-5415.2011.03788.x

Opening Up About Your Chronic Ilness

By Varada Srivastava from India

Since I was diagnosed with Crohn's disease, I've had trouble deciding who to tell and how to approach the subject of my chronic condition. It is difficult to casually bring up this topic in conversation. Usually, when you tell someone you have an incurable illness, the conversation becomes difficult for everyone. However, there are occasions when it can be cathartic and just what you need to strengthen your connection. This is what I've learned about Crohn's disease after having numerous awkward and amazing conversations about it.

It might be difficult to talk about your illness depending on where you are in your IBD journey or how open you are as a person. I found it quite difficult to discuss my diagnosis of Crohn's disease in the early years since I was still coming to terms with it. Seven years later, I feel more at ease discussing it.

The choice of whom to tell is even another challenge. When I was diagnosed, I was still in school, and I had no control over who knew about it. The majority of my students and teachers were aware because they watched me going through the diagnosing process. However, nobody was aware of it when I arrived at the university. I felt in charge of the coversation as a result, but I was also afraid about how other people might respond. Would they treat such a significant aspect of my life seriously? - was something I frequently wondered to myself.

I've had great luck to be surrounded by people who have supported me greatly while I've been a student. But negative experiences with this are inescapable. There will be people who downplay your difficulty or don't react with the greatest degree of empathy. We frequently believe that our condition is too complex to explain in professional situations or that it is private and should not be mentioned in the workplace. However, there are situations when you must inform others for logistical reasons, such as your manager, HR, or lecturers. They must be aware in order to offer you a little more flexibility at work. It might not be necessary to go into great depth about inflammatory bowel disease (IBD) at this point, but letting them know that you might need a few extra sick days or extensions and explaining the need for them may be beneficial in the long term.

Keep in mind that people might ask follow-up questions and it's completely acceptable if you don't want to elaborate. You decide how much information you want to share with them. Nevertheless, I discovered that when you have an incurable condition, being honest about it is a crucial and necessary process (even if you do it occasionally with the wrong people). The majority of people are kind and will react positively. But if not, remember that the conversation about your chronic illness doesn’t have to be seamless each and every time you have it. You can view it as a learning opportunity and overtime you’ll learn what details you feel comfortable disclosing, and with whom.

Featured photo by Koma Tang from Pexels.

Social Media’s Influence on Gut Health

By: Isabela Hernandez

We must be very cautious on what social media tries to sell when promoting these gut healing products.

I can’t be the only one who was succumbed to the influence of “gut tik tok” or Instagram posts claiming that a magic powder from Amazon will cure your gut. I see these posts, still knowing that I need to be trusting professionals over influencers, and a small part of me wonders Is this the cure I’ve been looking for? On days I’m writhing in pain or annoyed about my medications, I truly do think about buying into an influencer's recommendations on how to heal your gut and buy the millions of supplements they promote. Maybe I won’t ever have to take medication again! BUT, we must be very cautious on what social media tries to sell when promoting these gut healing products.

“I see these posts, still knowing that I need to be trusting professionals over influencers, and a small part of me wonders Is this the cure I’ve been looking for?”

On days I’m writhing in pain or annoyed about my medications, I truly do think about buying into an influencer's recommendations on how to heal your gut and buy the millions of supplements they promote.

It’s always disheartening for me to see people who have managed to “cure” their gut with products I’ve never heard of and wonder, is it even true? Most of the time, it is not. But it’s hard for us, those who have suffered with these diseases for a while and will continue to do so, to see these videos and not feel a flicker of hope that maybe our cure lies in the next new gut supplement. I’m not saying all the information on social media related to gut health is bad, some of it is very informational! There are many trained professionals out there who make incredible content based on diseases of the gut. We just need to learn, as a community for people with GI issues, to follow professionals who we trust to give us well-informed advice. It’s important to use social media as a means of getting trustworthy information, not gaining false hope by influencers with promotional content that lacks real evidence. This is definitely something I need to work on as well but I trust we will all be able to find a healthy balance when it comes to social media.

“ It’s important to use social media as a means of getting trustworthy information, not gaining false hope by influencers with promotional content that lacks real evidence. ”

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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.

Butterfly Effect: My Journey into Designing for Accessibilty

By Natasha Kacharia from the United States

A butterfly flaps its wings in the Amazonian jungle and a typhoon occurs in Europe. Tiny things,
according to Chaos theory, are the things that change the world. I am not sure if this applies to the world
around us, but what I know for sure is that a sequence of small events shaped my passion for digital
design, specifically in the field of accessibility and healthcare.

Growing up, I designed skating dresses. I absolutely loved employing design and aesthetics to
create dresses that expressed who I was, that told stories. However, in addition to my love for design and
storytelling, I am also a numbers girl. I crave the certainty that disciplines such as computer science and
mathematics provide. My study in Stanford’s Computer Science track in HCI perfectly encapsulates both
my interests, as I firmly believe UX Design is another vehicle to tell stories. Utilizing graphic designs,
word clouds, flow charts, and data visualizations, I can create consistent and strong messages that
resonate with users. In addition to my time at Stanford, I had the opportunity to explore my love for
design in the workforce. At Microsoft, I designed and prototyped in-app training content to onboard new
employees with MSXI applications, utilizing software such as Figma, Power BI, and WalkMe. At Ford, I
designed an interactive quiz for consumers to help them determine if buying or leasing their next vehicle
is right for them. Both these experiences solidified my passion for human-computer interaction.

Yet, while I knew I wanted a career in digital product design and I knew I wanted to make a
positive impact, I lacked insight on what. It was through an invitation as a fellow to attend the 2021 Lime
Connect Symposium – a leadership development program designed for high potential university students
who happen to have all types of disabilities – that I realized I was meant to design in healthcare. From the
age of 17, when I was diagnosed with the autoimmune disorder ulcerative colitis, I have had an ever-
growing interest in the healthcare industry. But since I did not have a desire to pursue medicine, it did not
appear to be an industry where I could make a difference. Meanwhile, through my numerous emergency
room visits and hospitalizations, I noticed many gaps in the patient experience. For instance, my second
week of my freshman year of college, I was rushed to the emergency room for excruciating thigh and
knee pain. The medical staff spent an hour asking about my previous medical history and running the
same medical tests that I had undergone less than three weeks ago in my hometown’s ER instead of
attempting to relieve my pain, as they did not have access to my previous medical records. My experience
was not unique; there is not a seamless way for physicians to access past records or for patients to transfer
them to new hospital systems. Some other common pain points of my patient experience have been
paying complicated hospital bills, coordinating with insurance, communicating my needs to physicians,
and obtaining medical help outside of regular business hours; many of these were only exacerbated by the COVID-19 pandemic. Through Lime Connect and then CCYAN, I had the pleasure of meeting other
disabled students and professionals who were using their past experiences, knowledge, and talent to affect positive change to make the world a more inclusive and accessible place, making me realize that I wanted to do the same.

Yes, I admit, there are some days that wish I did not have ulcerative colitis, but if I was never
sick, then I would not be me. My experiences, the good, the bad, and the ugly, have shaped who I am
today. I am not sure where the future will take me, but I am excited to flap my wings and hopefully make
the world a more accessible place.

Featured photo by Ash Moore from Pexels

How I Prepared for My Surgery

By: Maalvika Bhuvansundar

Hearing the word surgery is enough to give a lot of us nightmares. During my early stages of diagnosis, I was told of a future where surgery might be required, but I never thought such a day would come. Well, looking back at it now, I realize how wrong I was for assuming this. For a lot of us with IBD, surgery might be inevitable. However, there are also a lot of individuals with IBD who might not require surgery and could reach remission with medication and lifestyle changes. It wasn’t the case for me though. After six painful years of being sick, surgery seemed like the most probable solution. Got numerous tests done once again for the 100th time and realized that my intestines were narrowed. The good news was that Remicade was working well for me, and the narrowing was getting better but at a very slow pace! I was given two options, either I could get hemicolectomy surgery done or could rely solely on Remicade which might take longer to ease my symptoms. The following steps helped me make a clear decision:

Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Get all the required tests done and always ASK for a copy of your reports.

• Always get a second opinion! It’s our body and we have every right to get as many second opinions as we’d like. Don’t let anyone tell you otherwise.

• Make a pros and cons list - having things written out helps make a more objective and rational decision.

• Ask your doctor every doubt you have regarding the surgery even if it may seem repetitive or irrelevant. It is better to make a decision with all your doubts and concerns answered.

Luckily for me, my aunt and uncle are both doctors, and they assured me that getting this surgery would be the best decision I took, and they were spot on! There are a few things to keep in mind for post-surgery:

Ensure they have given you the medications required to take at home.

• Always write down the instructions given for home care.

• Ensure they have given you the medications required to take at home.

• Do not leave without the discharge summary!

• There are chances of having constipation post-surgery; it is a pretty common side effect. Ask the doctors what to do if this situation pertains to avoid anxiety and stress regarding this once you are back at home.

• Do not miss your follow-up appointments!

Thanks to this life-changing surgery, for the first time in six years, I am symptom-free, and though I will always have the scar to remind me of the pain, it also reminds me of the decision that helped me lead a better life. This experience showed me that life could take a different turn unexpectedly. However, the scary choices may sometimes be the best ones we’ve ever taken!

Why You Need a Restroom Access Card

By: Carina Diaz

There is a law in 13 states called Ally’s Law, which requires retail establishments to allow people with IBD and other similar conditions to access an employee restroom if there aren’t any public facilities available. It got its name from Ally Bain, who has IBD. When she was 14, she was shopping with her mom at a store when she experienced a flare and felt the sudden urge to go to the toilet. 

Since there wasn’t a public restroom, she asked to use the employee restroom. She was denied access by a manager and had an accident in the store. Ally and her mom met with an Illinois state representative, and they drafted a bill allowing people to use an employee restroom if they have a medical condition. It became a law in 2005. 

I’ve had a card for a few years now and it has really saved me in times of need when my symptoms were very intense. Just knowing that it’s in my wallet has given me peace of mind. Though it hasn’t always been well received. Here is a list of some of the places I’ve used it and my experience:

• A concert venue: At this particular venue, they close off the main restrooms after a certain time. A friend came with me to look for a bathroom, and it ended up being quite the journey. We found porta potties, but I wasn’t comfortable going in one and really wanted more privacy. I talked to a security guard and he told me to go to the VIP section and explain that I have an illness. I was denied at the entrance and the employee didn’t even let me show the card or anything. Then, I walked back to where the main bathrooms were, which were close to the stage, and had to yell at another security guard for him to hear me. I held up my card, and he kept asking if I had a medical bracelet. After a few minutes of back and forth between him, my friend, and I, he called over his supervisor who kindly let me use the bathrooms. This was a stressful situation, and although it’s a popular spot for live music in the city I live in, I refuse to ever go again. 

• The post office: I was with my mom running errands when I felt the urge to use the bathroom. I took out my card, and my mom explained my situation to a worker who then walked me to a bathroom. I remember feeling pretty sick that day, so I was very grateful.

• American Eagle in a mall: This was my most positive experience using the card. I held it up and told one of the employees that I really needed to use the restroom. I don’t think she even read it, but without hesitation, she led me to the back where the employee restroom was. She was very kind about it and didn’t make me feel weird or asked questions. 

I learned about this law and the restroom access card through a Facebook group, but this is one of those things that would’ve been helpful to know of when I was diagnosed. It’s an important resource to have and has helped me be an advocate for myself. The Restroom Access Act has also made the outside world a bit more accessible for people with IBD. If only it were a law in every state and all over the world!

You can learn more about Ally’s Law and the Restroom Access Act on the Crohn’s and Colitis Foundation’s website and at the American Restroom Association’s website for the bills in 13 states. To get your own card (which also has a mobile option), you can go to crohnsandcolitis.com (this is where I got mine) or girlswithgurts.com.

When Chronic Illness Causes You to “Quit” A Commitment

By Mara Shapiro from the United States

I go back and forth on the connotation that I associate with the word “quit”. I’ll be honest; I feel like I have “quit” a lot of things over the years due to my chronic illness. While the initial sting of having to quit an extracurricular activity or cancel plans at the last minute is always painful, I have learned some lessons that help me cope with this inevitable chronic illness experience.

First, I want to tell you a story of my most recent experience of “quitting” a commitment. Earlier this summer, when I had just moved back to Virginia, I signed up for an intensive 3-week learn-to-row class. I was looking for an activity that would be social, allow me to be on the water, and help me build back my physical fitness. This rowing class was 2 hours every evening, 4 days a week, for 3 weeks. Due to the nature of rowing and the fact that the boat only rows if it is full of competent rowers, it was very crucial that you attend every practice (or gave the coaches enough notice to find a substitute) or half the group wouldn’t be able to row. This was a situation with as much of a forced commitment as I’ve found myself in since I was diagnosed. Very quickly, this commitment, while fun and empowering, led to a lot of anxiety.

What if I had to go to the bathroom while we were out on the water? Too bad; there’s nowhere to go if you are a mile away from the dock… 

What if I got tired and needed to take a break? Too bad; if you stop rowing in sync with the rest of the boat, you will tip everyone over… 

What would happen if I couldn’t make a practice or two? People would be inconvenienced.

I found some ways to deal with the anxiety of those thoughts by trying to rest before practice and going to the bathroom before practice, but even when I tried to control as much as I could, I realized that a lot of my life because of my Crohn’s disease is unpredictable… and that’s okay! It became an exercise of how much I could accept the unpredictability in order to participate in this activity with my chronic illness; I also had to deal with a great deal of anxiety over the “what ifs”.

Unfortunately, I wasn't able to finish the last week of the class due to a cellulitis infection and then a C. diff flare-up. I was really disappointed and it felt like I was “quitting” at first. However, I realized that even though I technically didn’t finish what I started, I still learned a lot through the experience. 

I am so proud of myself for trying something new and pushing myself out of my comfort zone. Even though it didn’t turn out as I had initially pictured, I still had a lot of fun. The fun I had while rowing is a type of thrill that I haven’t experienced since I stopped rock climbing competitively when I was 16. I had thought chronic illness robbed me of the ability to enjoy a new athletic sport, but this experience proved me wrong.

My advice to you is:

• Don’t let your IBD hold you back from trying new things! Having some fear and apprehension when embarking on a new commitment, whether it’s athletic, social, academic, or professional, is normal, but I encourage you to persevere and step outside of your comfort zone anyway!

• If you have to adjust your commitment once you start, that is totally okay and to be expected when trying something new! Don’t think of this as “quitting” as much as pivoting. 

I’m excited to know what new things you have tried since your diagnosis or what this article has inspired you to try!

My Leadership Journey With IBD: Discovering the Leader Within Me

By: Dr. Fasika Teferra

I had always loved giving back to my community. Volunteering and community service are what I had done ever since high school, and I loved making someone smile by even the smallest action. However, I had always seen myself as the benefactor and the people I served as the beneficiaries. Even though I loved seeing my impact made, we had very little in common, and the relationship never got past friendship. Although I loved the work I did, it was not something that kept me up at night or dedicated long hours. Working on improving the quality of life for IBD patients in Ethiopia however, was a totally different journey. Besides dedicating more than three years continuously, I am constantly thinking of new ideas and ways to do things differently.

During my final years of medical school, I hardly had any time for my own medical checkup let alone organize an in-person event. So, I decided that until I finish medical school, I would support one or two patients via phone.

I have never thought of myself as an innovator or problem solver. I don’t think people are born leaders, but I also have never understood how leaders were actually made. I remember the exact moment when I knew I had to step up and create an IBD space for people to get support but no idea how I would do it. I was 24 at the time, 4th year in medical school, and barely any networking experience. So, I tried to reach out to some gastroenterologists to tell them I wanted to do something to help other IBD patients. At the time, I myself did not know exactly what I wanted to do until one doctor articulated the word support group. With the realization that my ideas have one collective name, I turned to Google to see how other people lead support groups. I saw a lot of in-person meetings as part of activities which was discouraging to me. During my final years of medical school, I hardly had any time for my own medical checkup let alone organize an in-person event. So, I decided that until I finish medical school, I would support one or two patients via phone, and I notified my interest to a gastroenterologist in one of the biggest teaching hospitals in Ethiopia.

Fast forward to November 2019 when I attended a conference titled Women Leaders in Global Health. The conference came to my attention as I was googling people and projects related to what I wanted to do. It was also so convenient as it happened in Kigali, Rwanda where there were many Ethiopians living there that I had known. With the reasonable plane ticket price and securing a free place to stay, I somehow managed to get the weekend off and traveled for the conference. I remember feeling at home during the conference. There were so many experienced women in the global health field with so many accomplishments, and even though there was a gigantic gap in age and knowledge between me and most of the attendees, I felt like I belonged. I had never been exposed to such a variety of experts, and I soaked it all in. By the end of the conference, I had a clear vision of what I wanted to do.

I was confident enough in my vision, and with the diverse board of directors, I pulled in all the technical knowledge I would need to succeed.

I went back home, and in just over a month’s time, Crohn’s & Colitis Ethiopia Charitable Organization was established as a local nonprofit in Ethiopia with a vision of finding a cure for Inflammatory Bowel Diseases and a mission to improve the quality of life for patients living with IBD in Ethiopia through awareness creation, community support and much more. I had no background in Civic Society Organization leadership or anything in that lane, but I was confident enough in my vision, and with the diverse board of directors, I pulled in all the technical knowledge I would need to succeed. I am part of the community I serve now, and I intend to make my own health as well as others as optimal as I can. Whether it is in the nonprofit sector or the for-profit realm, I have learned that as long as the passion comes from the heart, anyone can make a difference in their surroundings. I have learned that there are smart ways to acquire all the years of knowledge I would need to lead properly, and that I don’t have to learn everything and know everything before I can take action. If you have an idea you think your community can benefit from, don’t doubt yourself and start with a small step. Rarely do great things happen overnight, but with consistency and persistence, anything is possible.

Traveling With an Ostomy Bag

By: Carina Diaz

As the world is opening up a little bit more, I was able to travel a couple times in 2021. Having an ostomy made it an entirely different experience. If you also have an ostomy and haven’t traveled with it yet, here is my experience and some tips. 

Almost every time I’ve been through TSA since my ileostomy surgery, I’ve had to be patted down by someone. I asked an agent if there was some kind of medical pass or something so that I wouldn’t have to keep going through this, and she told me my only option was to get TSA pre-check. Getting patted down doesn’t take too much time, but it’s definitely something to keep in mind while traveling as it can add time at the airport. I wish there was a more accessible option since TSA pre-check costs money. 

Hiking El Yunque rainforest in Puerto Rico and a mirror selfie after emptying my bag at a restaurant.

As a kid, I was definitely a window seat type of person, but now as an adult with a medical condition, I much prefer the aisle. This way I don’t have to ask anyone to get up if I have to go to the bathroom during a flight, and it eases my anxiety. If I bring a carry-on suitcase, I can also easily access it in the overhead bin if I need anything. 

I change my ostomy bag every two to three days, so I make sure to pack my supplies accordingly. I also bring at least two extra ostomy bags in case of leaks or if I accidentally cut a hole through my bag. You can get travel size products from whichever company you order your ostomy supplies through. Adhesive remover spray and lubricating deodorant are two of my essentials. The adhesive spray helps to take off the bag easily and gently from the skin. The lubricating deodorant is a liquid you put in your bag so that output doesn’t cause a blockage or pancake at the top. 

Traveling with friends to NYC for a concert.

I usually always bring a small bag or backpack with me on the plane. This is where I’ll keep a small pouch of my ostomy supplies to use in case I have a leak while traveling. So far, it has only happened a couple times, but I was very glad to be prepared.

The supplies I bring are:

• Scissors to cut the hole for my bag

• My Hollister two piece bag system

• A trash bag to put the old bag in

• Adhesive remover spray

• Skin prep

• Cream for my eczema that I have on the skin near the bag

• Stoma powder

• Barrier strips

• Tape

• A small mirror. If I can’t access a family bathroom, the mirror comes in handy when changing in a bathroom stall. 

Besides keeping a pouch with supplies with you on hand, you can also talk to a flight attendant about having an ostomy and feeling anxious about flying with one. I have anxiety and letting someone know how I’m feeling helps me to calm down. This way if I end up needing help, they’ll know of my situation. I usually have snacks with me as well, but I also ask for an extra bag of pretzels since that can help output come out more formed and less liquidy. 

Being prepared is something that really eases my mind. After traveling the first time with an ostomy, you’ll have a better idea of what to expect. I hope that reading about my experience and how I prepare can bring peace of mind to anyone out there who is feeling unsure about traveling with an ostomy. 

It's not all about the bass - feeling comfortable in your skin.

By: Maalvika Bhuvansunder

Ahh, the ever classic “All about that bass”, the so-called “revolutionary” song which was meant to show body positivity. One question though: How is it body positivity if you are putting down other body types? Body shaming is something I have endured constantly. Growing up, I was an extremely plump and chubby kid. Every vacation used to be a nightmare with relatives constantly telling me to eat less and become slim. To a preteen! That's where the root of my low self-esteem began. I was told by people that I wouldn't have friends if I don’t reduce weight. So growing up, when I did not understand the lyrics, it's all about that bass… by Meghan Trainor was a revolutionary song for me. It made me, and I’m sure a lot of other girls like me, feel amazing about our bodies. But what about the others?!

I was told by people that I wouldn't have friends if I don’t reduce weight.

A few months before I got my diagnosis, I started losing a lot of weight. Each month I would have lost around 2-3 kgs. Very soon, the chubby girl became the skinny one. It was very confusing for me and my parents as to why I was losing all this weight. Post the diagnosis, at least we knew the reason. It was very new and weird for me to look this thin and I knew this was not a healthy weight loss, but I did not have any control over it. Keeping down food got difficult, and I developed this fear of eating as it was associated with pain. What added to this were the comments of other people.

There was one group that cheered this weight loss, glorifying it without knowing the pain I was in. Then, there were the others that made me feel ashamed of being so skinny. The constant, why don't you eat, are you trying to diet, you looking this skinny is UGLY got too much. I refused to step out of my house because of this constant judgement. Random strangers used to advise me on how to gain weight and that being this skinny is not good. Strangers did not know the cause of my weight loss, but when the family and friends that did know about it made such comments, it hurt the most. The constant comparison with others in my family to casually making “jokes” and trying to funny about my weight was horrible for me. It was impossible for me to gain any weight, and it was not like I did not know that I was dangerously underweight. But “Eat up!” was not the solution, and food was the main pain-causing component for me at that time.

If you are healthy and feel great, then who cares what shape and size your body is? People are going to comment either way.

Post-surgery, now that I am able to slowly gain weight, this fear is always still there of what if I go back to my preteen body type. On the other side, the fear of relapse in weight gain is also there. I’m sure a lot of individuals with IBD would experience body dysphoria, the feeling of not belonging in your skin, and hating the way you looked in the mirror. That was me for most of my life. This experience made me realize that what truly matters is feeling healthy. If you are healthy and feel great, then who cares what shape and size your body is? People are going to comment either way. What truly matters is your health. To this date, I am not fully comfortable in my skin, but I am making baby-step progress towards it.