Navegando los desafíos medicos y logrando sentimientos de empoderamiento

Navegando los desafíos medicos y logrando sentimientos de empoderamiento

Karen Mancera

Vivir con una enfermedad inflamatoria intestinal (EII), como la colitis ulcerosa, es un desafío físico, emocional y financiero. Una experiencia compartida entre los pacientes con enfermedades crónicas es la continua frustración con los seguros de salud en los EE. UU., especialmente para las familias de bajos ingresos. Junto con las interminables llamadas telefónicas con los consultorios médicos y los departamentos de facturación, esto se vuelve muy abrumador.

Habiendo nacido en un país diferente, el sistema de salud en los EE. UU. siempre había sido un concepto extraño para mi familia. No fue hasta que enfrenté mis costos medicos por mi condicion, que me sentí tan desinformada en el ambito médico  al igual que en el ambito academico por ser una estudiante universitaria de primera generación*. Lo llamaría algo así como ser un “paciente de primera generación”.

De manera similar a como navegué la universidad por mi cuenta, encontré excelentes recursos. Es sorprendente que podamos tener acceso directo en línea a contenido, personas y organizaciones que ayudan a pacientes como nosotros. La capacidad de unirse a grupos de apoyo virtuales también puede mejorar enormemente nuestra salud mental al conectarse con otros pacientes. Es reconfortante compartir tus desafíos con otras personas que han enfrentado situaciones similares y pueden ofrecer su perspectiva o apoyo moral. Los sentimientos de soledad y aislamiento no son inusuales, especialmente después de un nuevo diagnóstico.

Recuerdo cuando me desperté de mi primera colonoscopia. La conversación lejana del doctor con mi mamá. Él agitó un folleto que luego me entregó. Mientras aún estaba mareada, me dio mi diagnóstico y algunas copias del procedimiento antes de irme a casa. Toda la interacción no parecía real hasta que comencé a leer sobre la colitis ulcerosa más tarde.

La palabra que se me quedó grabada mientras investigaba era incurable. Me hizo sentir impotente. En ese momento, pensé que mis síntomas eran solo el comienzo de algo peor por venir. Lo que no sabía era que mi diagnóstico iba a influir en muchas decisiones cruciales en los meses siguientes.

Recibí mi diagnóstico a mediados de febrero del 2021, antes de una fecha límite crucial en abril de este mismo año. Habiendo postulado a múltiples programas de doctorado, el 15 de abril es la fecha en que los futuros estudiantes de posgrado deben decidir a qué escuela asistir. Dado que estaba postulando a programas de ingeniería biomédica, había una amplia gama de temas de investigación para elegir en diferentes universidades. Coincidentemente, una de mis opciones involucraba la investigación del microbioma humano y su influencia en la EII.

Debido a que ahora tengo una conexión personal con mi trabajo, aprecio profundamente todos los nuevos hallazgos que leo y escucho, que van más allá de mi vida profesional. Ser parte de todos los esfuerzos para comprender esta condición me ha ayudado a reemplazar los sentimientos de impotencia por un sentimiento de entusiasmo.

*estudiante universitario de primera generación - cuando eres el primer miembro de tu familia en ir a la universidad

A Reflection on Remote Learning by a Graduate Student with IBD

By: Linda Yoo

I began graduate school in late 2020 during the coronavirus pandemic. Although I knew that online schooling would be used at the beginning of my PhD journey, I had no idea it would continue for nearly two years. Throughout high school and college, I had IBD related accommodations, such as taking bathroom breaks. These accommodations often left me missing portions of classes and sitting in areas that would not disturb others. Although my accommodations were never perfect, I could actively participate and enjoy school.

Before the pandemic, I thought that the traditional in-person classroom setting was the best place for learning. However, the pandemic completely changed my views on education. Even though online schooling came with some struggles, overall I was thriving in graduate school with remote learning. With online school, I could use my bathroom, take my own breaks, make lunch at home, and decompress in a place I had control over. In many ways, this gave me more options to create a learning environment that fit my needs. I was often able to watch recorded lectures over and listen in on lectures even during my breaks. My time attending school virtually proved to me that I could be as productive, if not more, in an environment that I felt was supportive and tailored to my needs. Although the pandemic gave me a newfound liking for virtual school, I acknowledge that this form of education is not suitable or easy for everyone. There was difficulty connecting and naturally forming relationships with others, and the college experience was restricted in terms of socializing with others. However, we tried our best to create virtual hangouts and support groups to build new friendships.

Post-pandemic, we are now in-person for classes, but we still utilize virtual meetings for research projects to collaborate with colleagues all around the country as well as locally. Virtual meetings often save time on the commute and allow for flexibility with childcare. As someone with IBD, virtual meetings often give me the security of being in my own home and decrease my anxiety about being in a new place where I need to search for the nearest bathroom. I find that virtual meetings are helpful for large seminars and lectures, as many individuals might simply be listening to one person. However in smaller groups, discussions can be less natural and stunted because only one person can speak at a time without overlap, and body language is restricted.

All in all, we need to embrace technology and the ability to provide education in various forms to accommodate different needs. Online schooling presents opportunities for equity within higher education. Particularly for students with disabilities, online schooling can provide many benefits that traditional classrooms might not be able to provide. Online schooling is not a new concept for higher education; many online resources were available before the pandemic that students used to supplement their learning. There needs to be a continued push to make education accessible and affordable for all, and online school can be a part of that solution. As someone with IBD, online schooling has opened my eyes to how technology could improve the current education system by creating supportive and accommodating learning environments.

Diary Entry Eight Years into my IBD Journey

By: Divya Mehrish

Dear Body,

For eight years now, I have lived between your swollen walls: suffocating in the heat of flares but also learning how to call these walls home, to relax into the space that exists between flares, between battles, in the dim-lit corridor between health and illness. Body, I am still learning how to support you, how to best take care of you, how to recognize you even when the war raging inside me forces me to relinquish all the energy I have, when everything within me feels dangerous and foreign. It was eight years ago, when I was diagnosed with ulcerative colitis, that I began to realize that my relationship with you would have to be closer than most relationships children usually need to carve out with their bodies. I knew that I would have to learn how to become more in tune with you, to be gentler with you, to coexist with you, to keep my ears open and listen to you with intention.

Eight years have elapsed, and I am still learning. I am still trying, every day, to strike this balance with you, to work together with you. Body, I want to apologize for all those times I have failed, and for all the times in the future when I will fail again. I want to say thank you for supporting me every step of the way, for never giving up on me, for sustaining me, for allowing me to continue my healing process, for shaping me into the resilient person I am today, for never giving up on me. This is a journey that we will always be embarking on, together, and I appreciate you for all that you have done for me.

There was a time when I resented you – when I dreamed of having an uncomplicated and straightforward body, one which would never suffer so young. But, I have grown to recognize that all the beautiful moments in my life have been made possible only by you, and even by the presence of those not-so-beautiful moments. And, I have grown to appreciate that there can be beauty in pain, in the experience of working through that pain, in becoming stronger from defeating that pain.

Body, it has taken me a while, but I am growing to love you. I am making a real effort to remain in the moment with you, to stay present, to bear witness to you. I know that you do the same for me. Body, I am proud of you. I am grateful to you for all that we have been through, together, and for all that we will continue to endure, to experience, to find joy in, to build a life out of. Body, I am growing to recognize that there exists no “you” and “me” in the relationship that we have developed with each other – I am learning to feel comfortable in the act of blurring these lines, in fully embodying you, in fully embodying myself. Thank you for waiting for me as I continue to make sense of you, of myself, of our journey.

Sincerely,

Divya

Finding (and Losing) the Narrative

By: Laurel Dorr

For many years, I didn’t have language for my illness. There was no diagnosis to dissect; I didn’t even tell anyone about my moderate symptoms, despite their increasing impact over the years. Language is how I process everything, so in retrospect, it makes sense that I couldn’t understand it myself. I wasn’t willing to seek out the words, to let it be real. The first time I spoke to a doctor about it, I could barely find words to explain what I was experiencing.

For years, I struggled to articulate with any precision or insight about my symptoms, even when they were severe. It’s like my mind shut off the part that connects my body to language. After diagnosis, however, I began to cling harder to language, to narrative. That structure felt essential to helping me make sense of this new diagnosis, this shape that had hardened years of ambiguous symptoms into something real.

Journaling was (and still is) one of the most effective tools for coping with my illness, especially early on. Even when anemia and malnutrition made it difficult for me to think in words, journaling helped me process what was happening to me, not only in my body, but in my emotional state as well. It helped me slowly pull myself back to language, even when it felt too flimsy to hold onto. Even now that my cognition has improved, the introspective skills I gained are helping me articulate my medical experiences a little more effectively.

Around the same time, I did an intensive study in college on creative nonfiction writing. Although the original goal of the project wasn’t related to my disease - and although I sometimes preferred to avoid writing about it - it did give me a space to creatively navigate this new experience. The sessions I spent bouncing the ideas off my (wonderful) professor, finding ways to make this deeply personal topic into something more like art, were some of the most valuable parts of my early recovery.

Despite all those ways of putting my illness into language, there are aspects of this disease that still escape narrative structure. For instance, how do you identify a “beginning” of an illness, when I spent years suffering before the major flare that led to diagnosis? More importantly, what does an “ending” look like with a chronic illness, particularly when even “remission” hasn’t looked the way I imagined?

I often think about higher meanings. Every time a medication fails, for instance, I remind myself that they have each served some purpose, making me better in some small (or not so small) way. That one got me out of a severe flare; the next one allowed me to stop taking steroids. Sometimes, though, those stories are harder to believe. At the end of the day, I’m still cycling through medications, still unsure how I’m going to feel in six months - or even next week. In this way, my illness has taught me something new about narrative: there isn’t always a tidy ending, or a hidden meaning. It’s okay if the story feels out of control sometimes. At other times, maybe it will feel like the pieces are finally fitting together, and that’s okay, too. Finding the narrative of your IBD journey can be helpful, even when some chapters are still unclear.

Chronically Ill and Chronically Out-of-Love

Chronically Ill and Chronically Out-of-Love

by Natasha Kacharia from the United States

When I was seven, I wanted to become a princess. Not for the reasons most girls wanted to become princesses: the pink fluffy gowns, the silver sparkling tiaras, the popularity, the power, and basically their entire life served on a silver platter. No, I wanted to become a princess because I wanted true love, and well that only seemed to happen in fairy tales.

Fifteen years later, I have not met my true love. Sometimes, I am not sure that I even believe in true love. I go on dates, and for the most part, the guys tend to be nice, but there is no spark. There is nothing special. They all seem interchangeable, replaceable. At first I was adamant that the guys were the problem, but the more dates that I go on, the more I realize that I am the issue.

I am emotionally distant.

My detachment is not purposeful. I binge watch these all-consuming relationships - Romeo and Juliet, Blair and Chuck, Harry and Sally - and more than anything, I want to be so deeply in love with someone that the idea of living without them makes it hard to breathe.

But I just cannot bring myself to care about the little things, such as who texts first, who my significant other talks too, that I used to obsess over in high school. And, it is not just the little things that I could care less about, it is the big ones as well. A long-term boyfriend cheated on me, and I broke up with him partially because of my pride and partially because it was the expected thing to do. My friends thought he broke my heart, but they did not know what I did: my heart was already broken. And, it was not broken by any guy or relationship. It cracked by watching my body attack itself. Then, it cracked even further watching my old life slip through the cracks. My body broke my heart.

No guy can hurt me because no matter their level of betrayal, it could not even begin to compare to the level of betrayal that I experience by simply looking at my reflection. So here I am, twenty-two-years-old, and I love the idea of being in love more than I have ever loved a guy himself.

Maybe, I have already met my true love. Maybe, I have not. I am not sure, but what I am sure about is that I need to learn to love myself, love my body for what it is, and what it provides before I am able to fall in love with someone else. I need to mend my broken heart because I may always be chronically ill, but I do not always have to be chronically-out-of-love.

“I need to mend my broken heart because I may always be chronically ill, but I do not always have to be chronically-out-of-love.”

Featured photo by Leah Vieantana from Pexels.

Reflecting Back on the CCYAN Fellowship

Reflecting Back on the CCYAN Fellowship

By Varada Srivastava from India

Through my therapist, I learned about the IBD patient advocate Natalie Hayden's blog. I stumbled upon an interview she had conducted with Chronically Honest, who manages an art account devoted to inflammatory bowel disease. While going through her posts I noticed she had reposted a piece about a conference for Health advocacy on Instagram. I discovered CCYAN while browsing the Instagram of the Health Advocacy Summit (now known as Generation Patient).

I was still new to the health advocacy arena. My only experience was volunteering at ORDI (Organisation of Rare diseases India) and starting a support group for people with chronic illnesses at my university - which was one of the most rewarding experiences of my life. My previously sad and difficult diagnosis experiences acquired a new silver lining all of a sudden.

Many people are unable to comprehend the seriousness of the condition and how much it affects our daily lives. Fighting an unseen chronic illness can feel heartbreaking and isolating. The lack of knowledge about IBD made it extremely challenging to live and get diagnosed. It's essential to have a support system of individuals you can turn to when you don't have the energy to get out of bed. When you're struggling while watching from the sidelines, it's easy to feel alone, and when no one offers to help, you start to wonder if your suffering is even important.

One of the best decisions I've ever made was to apply for the Crohn’s and Colitis Young Adults Network fellowship. I've learned that patients frequently lead healthcare movements, bringing important opinions to the forefront of the medical profession thanks to the numerous medical professionals and patient advocates I came into contact with during my time with this organization. Both the industry and the patients gain from collaboration. Motivated patients regularly pursue the reactions of the medical system and the progress of change with a zeal, passion, and organization. Patient advocacy not only made me feel like I was a part of a community, but it also helped me accept my illness. I've discovered that it's more beneficial to speak up and let others know that I have an illness rather than being afraid to admit it.

I'm really grateful that I had the chance to interact with patient advocates from numerous countries and engage with professionals in various areas of healthcare from psychology to experts in biomedical devices. Thanks to the outstanding work of patient advocates at CCYAN people are becoming more aware of how complicated IBD really is. I consider myself fortunate to be a part of it. I will always keep the lessons I learned during this fellowship close to my heart and will always be thankful for the wonderful friends I made this past year.

Featured photo by Simon Berger from Pexels.

The Pandemic Changed My Life... for the better

The pandemic changed my life… for the better

by Natasha Kacharia from the United States

If I got $1 for every time one of my peers said the pandemic robbed them of a year of their college experience, I would be a rich woman. Among college students laid a universal hatred over Zoom University. And, while the pandemic undoubtedly sucked for the world, for me, it was arguably one of the best things that could have happened. I want to preface that I never got COVID-19, and if I had, then maybe I would change my tune.

I spent August 2019 – the month before my freshman year of college – in and out of the emergency room. While I was diagnosed with ulcerative colitis (UC) my junior year of high school, my UC was mild. It was never ‘emergency room bad’ and definitely ‘cannot even digest water bad.’ I called Stanford up, asking if I could start college in the winter quarter instead of fall quarter for the 2019-2020 school year. As I was a freshman, they said no; if I wanted to take fall quarter off, then I had to take the entire year off, and at that time, it seemed like the worst possible scenario. Remember, pre-pandemic, a gap year had a certain taboo. So, I decided to pack to my bags and moved into freshman dorms with about 1000 over-eager freshman.

A week later I landed in the ER for joint pain.

You see, in high school, the maximum dosage of prednisone I was ever prescribed was 30 milligrams (mg). My freshman year of college was the first time that I was on 60 mg of prednisone. I did not know it at the time, but the higher dosage came with noticeable side effects.

While the prednisone worked wonders on the inflammation on my colon, it also did wonders on my day-to-day life. I woke up and 3 am; thus, I was constantly tired throughout the day. I could not stop eating, and I gained more weight than I could comprehend. Pimples graced my face. I thought I was going insane. It was not until my mom saw a picture of me and asked how much weight I had gained, I realized it was not in my head at all but rather reality. I felt that I was going insane and felt depressed at the same time. The worst part was that I had no one to talk too. My mom would simply comment on my weight gain and tell me to eat healthier; she did not understand the food cravings I would get. My dad thought I was brave for going to college with my UC; I was always the brave and strong one with him, and he would just placate me. My high school friends were off living their best lives. My sickness coupled with the short duration
of time that I attended Stanford meant that I did not have an established friend group. And
honestly even if I did have friends, my friends would not have known me, not really; they would
just have gotten to know ‘sick me.’

So, there I was, a month into the “best years of my life” in a new state, taking more meds than I could count, surrounded by joyful students, and yet I never felt more alone.

My life was in complete freefall.

But I could not leave. I was too ashamed. I spent my entire life working my ass off to get into a school like Stanford, so I kept telling myself that it would get better. Every sacrifice I made to get into Stanford had to mean something, so I stayed. I blamed my depression, my problems on prednisone. I read that depression is a potential side effect of prednisone. Yet, when January came, I was still depressed. If possible, I was more depressed.

Then the pandemic hit, and we were all sent back home.

The pandemic forced me to make the decision that I was too scared to make. It gave me
an escape from the noise. I needed a minute to regroup, to rethink. The pandemic gave me that. It
put everything in perspective.

I realized that I did not want to change the world; I just wanted to be happy. I just wanted
to be healthy.

Featured photo by Anna Shvets from Pexels.

Bittersweet Road to Recovery

By: Maalvika Bhuvansunder

Recovery is a word that can be seen as both, something positive and negative. On one hand, recovery signifies better times, better life ahead, and no more pain. However, it also reminds us of what we had to lose in the process, the reality that we had something we needed to recover from, and a lot of other things. Recovery is even scarier when we do not know if it would last long or if it is just the calm before the storm.

My already low self-esteem took an even more downward spiral.

During our journey of recovery, we might not be our best selves. There is a lot we might have given up and the loss feels more real when we are healthier. Post my surgery and remission I started comparing my journey with others and started realizing all the ways I have been lacking behind. My career was on hold for the two years that I was in a horrible flare, my master's grades were not as great due to my flares, and my social life was practically non-existent. My already low self-esteem took an even more downward spiral, which was surprising, as I had expected being in remission would help improve my self-esteem. What did not help were comments of people saying finally I would stop crying all the time or that at least now I can start having a career. I started comparing myself to those my age and started resenting myself for not being where they were. In this process, I was becoming a bitter person who was unhappy with others' success and was wallowing in self-pity.

A year ago I could not get out of bed or eat a single morsel of food. Now, I am healthier, able to eat what I love, and do things I have wanted to do.

What I forgot to realize was that being in remission is my growth! A year ago I could not get out of bed or eat a single morsel of food. Now, I am healthier, able to eat what I love, and do things I have wanted to do. This is a huge accomplishment for anyone with a chronic illness! I did some self-reflection and realized I was being too harsh on myself. I am a part of a fellowship that helps others like me and I realized how big of an accomplishment this is! There is no fixed definition of growth and success.  Instead of feeling bitter over others' success, I started being a part of their happiness. They were there for me when I was at my lowest, so it is my turn to be there for them. I started celebrating the small successes in my life and it made me feel proud of myself. One of the steps to recovering was accepting the fact that it is okay if I am not on the same path as others, as my journey is my own and is unique. Our bodies have been through a lot, so the fact that we can function with all the pain is a huge accomplishment. Our society is always going to have this “fixed” measurement of success. However, setting my definition of growth and success made me feel free and liberated.

“Each person has their journey and there is no fixed timeline for achieving goals in life.”

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Thoughts On Being “Strong” with IBD

By: Carina Diaz

This year was my ten year anniversary of being diagnosed with Crohn’s disease, and I’ve often thought back to that time period in my life – and how much I’ve been through since then. I was 18 and a senior in high school freaking out about entering college with a disease I’ve never heard of. I used to think that doctors could fix anything. I saw health as linear. You go to a doctor when you feel bad, they give you medication, and then you go home. Simple as that … except not really.

The process of getting my diagnosis was actually pretty linear compared to other stories I’ve heard. I was needing to go the bathroom a lot more frequently and would be late to class from time to time after lunch period. My mom also noticed a pattern at home, so we went to my primary care doctor. She gave me a referral to see a gastroenterologist and from there I had my first colonoscopy experience. The only thing that made it not so bad was going to my favorite restaurant after, which has since become a tradition. 

I don’t remember the exact words that the gastroenterologist told me when he discussed the results, but I do remember how I felt in that moment. Very lost, extremely confused, and unsure of what having Crohn’s disease would mean for me. I immediately felt like an “other.” Different from my friends. I’ve never heard of this illness, I didn’t even know chronic illnesses existed, and I didn’t know anyone else who had a similar story. I felt alone.

Through these past ten years, so much has changed. I have changed and learned a lot. There has been so much information on IBD that my doctors didn’t tell me about that I had to learn on my own or from the internet. I have gained a lot more knowledge and understanding by hearing other people’s stories. Looking back, it makes me want to give 18 year old me a hug for all the suffering that could’ve been avoided. 

Having a chronic illness pushes you in so many ways. I didn’t know not all doctors have your best interest in mind. I had to learn not only how to listen to my body, but how to advocate for myself – and that is a process that will never end. I’ve learned to identify my boundaries, prioritize who I allow into my life, how to cope with stress, and that no matter how much I try to take care of myself, I still might not feel well. And that isn’t my fault. 

People who are chronically ill often get praised for being strong – and I wish able-bodied people would understand that we don’t have much of a choice. There are things I constantly need to do and be aware of to minimize the chances of a flare. But sometimes even my best efforts won’t prevent that. Crohn’s takes up a big space in my brain and there is not a day that passes that I’m not thinking about my symptoms.

"Lucky Girl": A reflection on privilege and IBD

“Lucky Girl”: A reflection on privilege and IBD

By Natasha Kacharia from the United States

I go to Stanford. I have parents who still love each other. I have amazing friends and a wonderful sister. I drive a BMW convertible. I vacation in Costa Rica and Cabo. For all intents purposes, I have a picture-perfect life.

I always had.

I mean for as long as I can remember, I have always been referred to as a “Lucky Girl.” I never agreed with them. Am I privileged? Yes. Am I lucky? No, I just framed things a certain way. If I lost, I did not want it that much anyway. If I won, the entire world would know about it, and I would underplay how much effort I put into it in the first place. Everything that happened to me – the good, the bad, the ugly – is the best thing that ever happened to me. It is just part of my plan. I used to revel in the nickname “Lucky Girl.”

Now, it annoys me.

Despite being diagnosed with ulcerative colitis 5 years ago during my junior year of high school, this year (my senior of college) was the first time I applied for housing accommodations. I never felt justified before because if I was in remission, then I questioned if I truly needed them. However, after a bad flare during my junior year of college, I decided it was good to plan for the worst-case scenario, so I started my senior year with a single, a private bathroom, and a kitchen. People often thought I paid a doctor to write a letter asking for accommodations for me. Others assumed I simply sweet-talked Stanford’s office of accessiblility for accommodations. I often laugh, neither confirming nor disconfirming either theory. I am not shy about being chronically ill, but I clam up about the specific details. Besides, it is not anyone’s business on why I have certain accommodations. I told my mom about the situation, and she said, “That is a good sign that people think you are normal.”

I am not sure what my facial expressions conveyed, by my mom felt the need to correct herself, “I only meant that you do not look sick all the time.” I gave her a small smile. I knew that statement should have made me happy, but for some reason it did not.

This Thanksgiving, a cousin made a small dig on how lucky I am to attend Stanford and the opportunities that entailed. I wanted to say how lucky he was to have great health, but I simply commented on how we had similar, if not parallel upbringings, then I walked away.

His statement irked me, though. We grew up with the same education and the same access to opportunities. The biggest difference is that I spent my adolescence studying my ass off, and he spent his dating and hanging out with friends. Besides, if he wanted more opportunities, he could achieve it with a bit of hard work. I wanted better health. And there was nothing I could do to achieve that.

I am privileged and I have ulcerative colitis. Chronic illness does not distinguish based on socioeconomic class or a picture-perfect life. I just wish others understood that.

Featured photo by PhotoMIX Company from Pexels.

My Leadership Journey with IBD: It’s All About Mindset

By: Dr. Fasika Teferra

I am a person living with Crohn’s Disease. It has taken me a long time to accept and learn to live with the condition, and through that time, I realized that I had a passion to serve the community. I had always been told the only institution that does good is a nonprofit, which was what pushed me to pursue one. I am thankful for the journey and all the life experiences that came with it.

Dr. Fasika Teferra featured in Lights Camera Crohns: An Unobstructed view in March 2021. Click the image to visit the article.

Being a co-founder of a nonprofit working in the IBD sector meant a lot to me, IBD patients, and the community in general. Since IBD had been assumed as rare in our country, IBD patients found comfort in knowing that there is an organization dedicated solely to increasing awareness to the condition. It also helped me to sharpen my leadership, communication and many other skills as I was the only one in the public talking about my condition. It also meant a lot for the community in general as I got feedback from many other people living with other noncommunicable diseases to see if they can replicate my path and raise awareness about their conditions as well! I had such a great impact that it shocked many to hear that I resigned 3 years into this work.

As I was starting out, I made a commitment to myself to create some type of ground work before I even attempt to apply for a grant. My reasoning was that since there is virtually no data on the condition and no one coming forward saying they had IBD, I believed I had to have a track record of projects and impact to convince the grant makers. In my mind, since those around me didn’t even grasp what IBD was, how can an institution support my vision for the IBD community? It had been so stigmatized that it took me well over two years to even get people to join our virtual community. Almost 3 years of full time service for this cause helped me learn a lot of things, especially when it came to grants and community work.

Dr. Fasika Teferra featured in The Guardian in October 2022. Article by Saeed Kamali Dehghan. Click on the image to visit the article.

From my perspective, I believe I took the right path as I was starting out. But as time went by, I realized how hard it was to receive any funding to local grassroots organizations. For the most part, there was a need for data as proof of the number of people living with IBD (rightfully so), but there needed to be some form of financial support to conduct that research. I was also introduced to the term social enterprise in the middle of my journey. Having worked with my husband in growing his business, I realized that it is not just nonprofits that do good in the community, and that is is all about mindset.

I would not have changed anything if I were to go back in time. I think my time in the nonprofit sector has taught me so much in terms of resource utilization and the skill to craft services tailored to the community’s need. After asking all the relevant offices, I have learned that there is no special license for social enterprise. After speaking to a couple of social entrepreneurs, I realized that social entrepreneurship is nothing but a mindset, atleast in my country. Having gone through the challenges of financial support for the organization while working full time as a volunteer for 3 years, I understand that it is now time to use my resources to create a system where I can multiply and triple what I have so I can be one of the local donors to this and other initiatives in Ethiopia.

I think being a first-time mom, being in remission, and having a strong desire to be a change maker in the healthcare system in Ethiopia has made me sit down and re-think a lot of things. Time and energy are resources that are precious in my opinion, and recalibrating those to maximize my impact in my community was crucial. Most don’t understand my decision, but that is okay. I believe that passion and vision mature and take different routes than anticipated, and I can only show the vision I have in my mind by bringing it to life. Although it is multifaceted, I have already taken the first step, and is almost ready for implementation. It has been a passion of mine to work on health literacy, but doing it in a way that is sustainable and most impactful had been a mystery to me until recently. I will be sharing my initiative in detail in the next article as it might be modified and replicated in other parts of the world.

Should You Be Open About Your IBD With Others?

By: Isabela Hernandez

I’ve often wondered the effects of how open I’ve been about my disease, through these articles, on the mental coping of my disease. It has gotten me to look back on my journey and the strides I’ve taken when sharing the mental and physical fatigue I deal with. I used to be very closed off when it came to all things IBD. I would tell the people around me that I have “stomach issues,” and that’s it. As I entered into my advocacy journey, I started letting the people around me in; giving them the information I withheld for so long about a part of myself I repressed from the outside world. I truly believe that through this, I have been able to mentally process my disease better. So, this is where I wonder: does being more open with your disease mean better outcomes? Or alternatively, does being private about your disease mean you are able to maintain sanctity within the crazy experience that is having a chronic disease?

It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes.

As I spoke with another 2022 fellow, Carina Diaz, about this, and she expressed, “It’s exhausting to continuously have to educate people closer to me on IBD, especially family. I’ll either point them to resources so they can do their own research [like content made by fellows] or tell them that I’m not talking about my health at the moment,” which is something I feel and relate to daily. Even though I am open to those around me about my IBD, they still sometimes look at me with eyes of confusion, never fully grasping what I tell them. It can become exhausting trying to share an experience with someone that will never truly understand what it is like to be in your shoes. So, this somehow supports the argument that being private about certain parts of your IBD can actually save you from the exhaustion that comes from having to share very personal parts about yourself.

I encourage every IBD patient to find a community of patients your age to talk to.

However, Carina also mentioned, “It’s comforting to know I’m not the only young person who sees their doctors more than their friends.” I have come to the conclusion that there are two ways that I find best when being open about your disease. I believe being completely transparent, and not holding back, with other individuals who suffer with IBD through peer support absolutely shifts the way you will view your disease, while being open but maintaining healthy boundaries with friends and family will help them grow in their understanding of your disease while allowing you to maintain autonomy within your space as a patient. Having peer support through the IBD community is one of the best things that has ever happened to me and something I am eternally grateful that I found. I encourage every IBD patient to find a community of patients your age to talk to, hang out with, or even just meet virtually and challenge yourself to share parts of your journey you have been too embarrassed or scared to share. I used to think that certain parts of my life were too much or too humiliating to share to others and that they were these huge parts of my life that could never be lived down. However, I’ve found that once you share them, you realize they’re actually not that big, and they become just small, formative parts of the journey as a person. It is even more comforting to share them with people who you know, in some way, will understand.

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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.

Reflecting on My Journey as a Patient Advocate

By Varada Srivastava from India

I notice a common thread running through my life that began with some of my earliest memories
as I consider the road that led me to pursue patient advocacy. My advocacy work began in 2020
after COVID-19 struck, despite the fact that I was diagnosed with Crohn's disease at the age of 15 in
2015. Patient advocacy is something I was first introduced to thanks to the blog of Natalie
Hayden. She's a former news anchor and author of the blog, “Lights Camera Crohn’s”.

Starting a support group for people with chronic illnesses at my university was the first
project I worked on, and it was one of the most fulfilling experiences of my life. My
previously depressing and challenging diagnosis experiences suddenly had a new silver
lining. I was able to help others who had just received a diagnosis, just as I had hoped
someone would be able to help me.

While doing more research on the patient advocacy movement online, I came across
multiple organizations supporting and promoting it. One of those organizations was the Crohn’s and Colitis Young Adults Network. I decided to apply for the CCYAN fellowship and it was one of the best decisions I've ever made. After encountering several medical professionals and patient advocates during my time with this organization, I have come to the realization that patients frequently take
charge of healthcare movements - bringing crucial viewpoints to the frontline of the medical
profession. Working together benefits the industry as well as the patients. Motivated
patients are frequently passionate, outspoken, and organized in their pursuit of the medical
establishment's responses and the advancement of change. Social media has made it
feasible for many of these bigger conversations, and we need to pay attention.

On a personal level, I can now better manage my sickness and feel like I'm a member of a
community thanks to patient advocacy. Even if you've never met in person, you can find
solace in a friend who understands. Before it was offered to you, you might not have known
you needed it. I've come to terms with the fact that speaking up about my sickness and
seeking coping strategies is more beneficial than hiding it out of fear. Patient advocacy has
allowed me to work with excellent organizations and meet wonderful people. It has given
me a sense of purpose and helped me adopt a more optimistic perspective on my illness. I
intend to continue working toward it as long as I can.

Getting active in patient advocacy is possible in a variety of ways. There are several groups that
offer patients help and guidance as they begin their advocacy journey. Some of these include CCYAN, Generation Patinet, and many support groups across various social media platforms.

Featured photo by Prateek Katyal from Pexels.

Saying No is Ok!

 By: Isabela Hernandez

There are going to be days when your IBD is acting up, and you do not feel up to going to events or seeing friends you’ve committed to seeing. Yet, you feel guilty for saying you don’t feel well. I used to struggle with this heavily. I would have a plan with friends that was made in advance, but the morning of, I’d wake up feeling extremely sick. Many thoughts would be going through my head. Do I go and stay in pain? Do I say I’m sick; would they believe me if I say I’m sick? Why do I feel guilty for changing my mind? I would try to explain to the people around me how I was feeling, but I could see in their faces they didn’t really understand how intensely my IBD affects me, especially socially. To them, me saying no was me bailing on spending quality time with friends for selfish reasons. For me, saying no was the only way I could preserve the sanctity of my physical and mental health. These experiences with friends have taught me many things.

There is NO reason we need to feel guilty for prioritizing our health, whether that be saying no to a friend or backing out of a plan last minute due to symptoms.

If your friends don’t try to understand how your IBD affects your life socially, then it may be time to reevaluate what these friendships mean to you.

Find healthy ways to communicate with the people you are close with to let them better understand your IBD - if you don’t let them in, they’ll never truly get to know you and your disease.

Be open with YOURSELF about what you feel and adjust your day based on that. Everyday is different and that’s ok.

Do what’s best for you!

Now, those around me know when I say, “I’m having some symptoms today, I don’t think I can go,” that it is not personal, but I need to focus on myself that day. I’ve found people who have learned to respect that and really understand what I feel. I challenge you to put yourself first and learn to prioritize your health, even when it’s hard.

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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.

My Fog is Feeling Very Brainy

By: Carina Diaz

FYI, this is about brain fog (in case you’re confused about the title). It’s one of the most complicated symptoms to explain to able-bodied people, along with fatigue. Because anyone can feel those things, right? Well … kind of. A person with IBD experiences it very differently. 

Since being on inflectra and having ileostomy surgery, my brain fog hasn’t been too bad, but it’s still something I feel often. Sometimes when I’m having a conversation with someone, it’s like my brain glitches for a moment, and I not only have to remember where I am, but what I was even saying a second ago. It causes me to stumble over my words and say “um” a lot. So much for sounding articulate. It also conveniently happens a lot at doctors appointments.

It’s true that anyone can have moments like these, but when you have IBD it’s a more common occurrence. I can get a full night’s sleep, eat right, exercise, and take care of myself as much as possible, but brain fog will still happen. I’ve lost track of the number of times I’ve opened an app on my phone or walked into a room just to forget what I’m doing in the first place.

This is a very hard symptom to put into perspective. It almost sounds like it’s not that big of a deal. Especially when compared to the laundry list of awful symptoms that IBD can bring. So let me try to paint a picture. For me, brain fog is like a cloud that follows me. Some days it’s big and other days it’s barely visible, but it’s still always following me around. I’ve learned I need to write everything down in my notes app and use Google Calendar to keep track of work and appointments, or else I’ll forget everything in an instant. 

Brain fog mostly affects me in social situations. It’s very hard to follow along with conversations that involve multiple people. It’s as if existing, breathing, listening, and thinking are all too difficult to do at once. It tires me out, and the only thing I can really do about it is to take time to rest. 

Instead of my brain forming thoughts, it feels like a big empty space. Or sometimes it’s the opposite and turns into that one episode from SpongeBob where there’s multiple filing cabinets on fire and he’s running around frantically. Nickelodeon

It also makes it difficult for me to communicate. The process of thinking thoughts, forming those into words, and then my mouth saying them becomes quit tedious. 

It can be easy some days to feel very frustrated about dealing with this. These are some things that help me to deal with this symptom:

• Being gentle with myself

• Doing a brain dump in my journal or a voice note on my phone

• Leaning on my community

• Taking a nap

Brain fog is a friend I didn’t ask to make, so I just try my best to use the coping skills that I’ve learned over the years.

What I Wish I Knew Before Having an Ileostomy

By: Carina Diaz

It’s been a year and four months since my ileostomy surgery, and I’ve been in a reflective mood about it. This was my first and so far only surgery I’ve had for my Crohn’s Disease. I had first learned about ileostomies and ostomy bags on Instagram and then later on YouTube when Hannah Witton shared videos about her surgery. To be honest, it sounded like the worst case scenario. Little did I know that years later, it was a decision I would have to make.

There was so much I didn’t know about this surgery and what living with an ostomy is really like. I didn’t know that it was reversible (in some cases) and that it’s not considered an invasive surgery. While in the hospital, I accepted a job and ended up moving to a new city a month later The first month post surgery was very hard, and I had not been well prepared by the hospital staff before being discharged. Here is what I learned post-surgery and advice I wish someone had told me:

• Get the name and number of an ostomy nurse before you leave the hospital. This is so so important. I did have a home nurse come for a few days to help me get familiar with changing my bag, but after that I was basically on my own. I ended up having a lot of blow outs and skin issues and didn’t know of anyone to contact. Make sure to ask your hospital nurse or health insurance for a recommendation.

• You don’t get to choose how long you can wear a bag for, your body does. One of the hospital nurses told me that some of her patients could change their bags up to once a week and I thought to myself, “That’s perfect, I don’t need to change it too often.” But this wasn’t the case for me. I have eczema, and the skin where the bag goes was not happy about it. It took me almost a full year to nail down a changing routine that worked for me and it ended up being every other day. Everyone is different and there are so many factors when it comes to how long to keep your bag on for. The only way to know is through trial and error. 

• There are different kinds of ostomy bags for different types of stomas. The bags that hospitals supply you with are the cheapest of the cheap. Mine were clear and seeing not only my output but also my intestine was disturbing. Thankfully there are more options out there than just cheap ones with no air filter to let out the gas that can cause a stoma bag to balloon. There are also all kinds of products to help your skin and keep the bag in place. 

• Your weight could fluctuate…a lot. I was underweight before my surgery and had been for several years. Post surgery, I got back to my normal weight and then some. This has been one of the hardest things about an ileostomy for me. I was finally absorbing what I was eating instead of it immediately going through me. Body image is something that I’ve really struggled with since being diagnosed with Crohn’s, and gaining more weight than I’m used to honestly hasn’t helped that. 

Something that I keep reminding myself of when I got through hard things is that what I need is time. Eventually I will get through it and another difficult time will come, but by then I will be better able to handle it. Living with IBD is hard, and it’s best to be kind to yourself through it. 

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