Navegando los desafíos medicos y logrando sentimientos de empoderamiento

By 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

by Natasha Kacharia

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

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

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

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.