Seeking meaning in illness

Seeking meaning in illness

By Tanisha Singh from India

Psychoanalytical literature has often suggested that every symptom/illness often has an adaptive purpose, no matter how intolerable and unpleasant. In some aspects, in which the illness prevented something worse and prevented the recognition and perpetuation of a reality that was probably intolerable. It is in this that the illness may offer to the bearer something of value to be derived from one’s future with illness. Freud was of the idea that neurosis or illness would block the instinctual energies of one’s psyche which are so essential for one to be able to live a full life, as if split off from one’s internal drives/instincs. So, it is suggested that perhaps, in one sense, illness may offer an opportunity to free up those psychical forces that are now presenting in front of us as illness, which otherwise would have operated overtly, hidden from view, somewhere in some layer of the psyche. 

I have learnt that a chronic illness does not just fit into my life as it was, or into my personhood as it was, and that a new life/self had to be constructed for me to accommodate this reality of having a chronic illness in a way that is atleast somewhat tolerable or settled. That I suppose, would require even a cognitive and emotional meaning making exercise, which I feel this psychoanalytical view of illness has offered to me. 

I was living a life where I was working two jobs (having halted my studies), eating less, working hard at work, at the gym, at every aspect of my life to be able to overcome my reality: a reality with minimal familial support, with meagre financial resources, what have you. I was extremely lonely, unhelped, and alone. I missed having a family, I missed feeling supported and I really missed not having to put out one fire after another which was wearing out my nervous system at a rapid rate. What was worse is that this sense of turmoil was not just environmental, it was also an internal state. I was determined to change my circumstances, so day in and day out I breathed the fire of restless ambition. The fire, which is often idealized in the capitalistic world, was not a home the body-mind should have to perpetually rest in. Where was the ‘rest’ even? 

To cut the long story short, a couple years later, I found myself with an illness that would said, “I am here to stay, and I can’t be ignored.” 

It took falling this severely ill for me and my family (atleast a part of it) to notice me and come to my aid. It took falling this sick for me to finally quit chasing a ghost and to slow down. It took me the morbidities of a being a mortal being to acknowledge my mortality and not try to outrun it. To reasses my choices. To really ask myself, “If I am to live a difficult life, what would I want to really spend it doing? What would make the pain of it all slightly worth living through?” 

It took my illness for me to find better meaning in my life. I wanted to live to be able to do the work that made other people’s lives a bit more tolerable, I wanted to live to be able to enable my closest friends and other loved ones lives their lives feeling more supported and loved! I wanted to love and laugh with my people, I wanted to dance, and read and speak to people about their realities and such. I wanted to rest! I wanted to slow down! I wanted to be helped. (And as I have said oftentimes before, there is respite in patienthood.)

And in a very twisted sort of way, rest and support only come with my illness. I still hate it though, but begrudgingly sometimes, I have to agree that it wasn’t random. It prevented something much worse: a complete exhaustion of the self in the pursuit of something while desiring and needing something entirely different that at the time didn’t feel like it could come.

Featured photo by Pixabay/www.pexels.com/photo/pile-of-books-159866/

Scrying

Scrying

By Divya Mehrish from New York, USA

We seek ourselves in the blue of reflection:

    the way flames flit across our eyeless

faces like dying   butterflies,            wings wilted

by the limelight. The cracks in our bodies echo 

      the fissures       of the rusting earth:             veined 

   without warning.     Tell me,        what blood   flows

  through your blood -less      body?             Soften   

           your chest            so I may          peel        apart       your ribs,          

                   slurping             your ichor           like ambrosia—                                        

    sweet     until I forget         I am allowed         to die.         

              Moonlight                   is catching; caught         in the jaws          

   of arched          windows. We bid the sun   goodnight        with palms 

      ignorant of the adagio           music of curved              rims.          

   If we try hard           enough,                       we can make       anything                 

                      sing.         Let us hold          ourselves            in balance: 

stacked                       and straight                   and tall—                look ahead,             

              and you won’t             get lost                    in yourself.   I turn 

    away from you             to shield             my eyes          from the scalding 

                  shadows,           but not        before       I catch             a pearl 

     of salt                dripping       delicately          down,                    clinging 

          to the bottom               of your eyelid. Sorrow           is corrosive,     

  you know.                 You should remember:            already,  

                         you’ve lost                   your gut                to self-erosion. 

Gaze         into the cerulean      depths             of the scrying       bowl

       and watch             your own image                                   shudder 

                 in wet agony.      There, there you may find yourself.

Featured photo by Bogdan Dirică from Pexels

Musing over a weight gain and IBD

Musing over a weight gain and IBD

By Mahder Ayalew from Ethiopia

Growing up, I always faced the challenge of being thin and constantly falling sick. I vividly remember being just 28 kg (62 pounds) when I was 12 years old. My health was a constant concern, and I found myself visiting hospitals often in search of the cause of my poor health. However, for six long years, the cause remained elusive.

Finally, the culprit behind my health issues was discovered - Crohn's disease. Although finding the cause brought some relief, the treatment plan involved the use of steroids,  As expected, I rapidly gained weight, putting on 10 kg (22 pounds) in just three months. My appetite became insatiable, and I started feeling healthier as the pain began to subside. But this newfound stability was short-lived.

Whenever I went off the steroids, my appetite would decrease, leading to weight loss, and my hopes would diminish. This cycle repeated itself for the next seven years. Despite the turbulence, the journey was worth it, as my quality of life improved significantly after my diagnosis.

Four months ago, I underwent surgery due to a fistula, and a portion of my stomach was removed. The surgeon was confident that I would gain weight after the procedure. Many of his patients experienced weight gain within just a few weeks. However, I remained skeptical, as I had never gained weight without the aid of steroids. My expectations were set low.

But a few days ago, as I stepped onto the weighing scale, I noticed a change. It wasn't a dramatic transformation, but it was enough to make me question whether I had truly gained weight. I rushed to the pharmacy to confirm it, and to my surprise, the scale was correct. I had gained almost 4 kg (8.8 pounds) without the assistance of steroids. This revelation triggered a flood of emotions within me.

I felt happiness and relief at finally achieving weight gain without the use of medication. However, I was also filled with fear, unsure of whether I would be able to maintain this weight or if I would experience a downward spiral once again. All my life, I had yearned for a sense of normalcy - a normal weight, a normal life. Perhaps this is the start of that journey. Perhaps I should celebrate this achievement. Maybe, just maybe, the future holds good things for me. I hold on to my faith with determination.

One positive aspect that emerged from my Crohn's diagnosis is a newfound appreciation for life's simple pleasures. I no longer take things for granted and express gratitude on pain-free days. I am grateful when I can eat with a healthy appetite, when I have enough energy to carry out my daily tasks, and when I experience a break from the burden of illness.

Although uncertainty lingers, the hope for a brighter future burns within me. My journey with Crohn's disease has been challenging, but it has also taught me resilience, gratitude, and the importance of cherishing the moments of respite. I continue to face my health battles with determination, taking each day as it comes, and trusting that the road ahead will lead me to a life that surpasses normalcy - a life filled with happiness, growth, and a sense of fulfillment.

Featured photo by Ann H from Pexels

Just a list of things my people do to support me

Just a list of things my people do to support me

By Tanisha Singh from India

I feel, as much as I have had to figure out how to live with a chronic illness, those who care about me have also had to figure out how help me live with it. And I don’t think I knew the depths of other’s empathy before, ‘til the time I was at the mercy of it. So, here is a simple, plain list of things that others have done that helped me. I feel that appreciating what is working can be an encouraging factor in raising awareness about the much needed structure of support that is needed to accommodate disabilities and/or living with a chronic illness.

1. My bestfriend, had come down from Canada to be with family and happen to fall sick because of the extreme weather conditions in India, while I myself was struggling with my illness. We are each other’s primary support structures and somehow we were both sick. He said to me a few days later, when he showed up at my house to help me with certain chores, as we carried bags of veggies which often resemble the weight of a mountain for me to carry, that he knew I needed him more and I lacked support, so he tried to recover to be able to do that for me. 

2. My bestfriend, Moomal, sent me really expensive supplements from where she lives and each time she is traveling to India, she never forgets to ask me if I need anything from here. 

3. Another one of my best friend’s, Parakh, I know is softer towards me, and works extra hard at trying to make me laugh, even more so than before, everytime we talk, and I know that it comes from a place of recognition and acknowledgment of the difficulty that comes with living with an illness.

4. They check up on me, encourage me relentlessly to put myself out there, to go live the way I want.

5. They read up about my illness. They inform themselves so as to better understand my life.

6. My friends walk slower and help me with my work, with my bags, and they try always to meet me at my house (as I prefer that more) without requiring me to go out that much or exert myself.

7. Even more importantly, they include me. I had lost most of my social circle after the illness because of my absences and my inability to be able to do the things I could do as an able bodied person before, however what remains is a small but valuable circle of friends who genuinely want to spend time with me, doing the things I am able to do.

8. Mohit and Moomal have both baked me cakes that I could eat.

9. My ex boyfriend, Devang would read books on new medical advances that could offer a ray of hope to me. He would stay up at night with me when I couldn’t sleep because of pain. He would be on a call with me while I was on my way to the doctor. He embraced the illness as part of our lives without making me feel different because of it. He once drove down to my house to cook for me, when I was very sick, in between his work.

10. Pulkit holds me when I am feeling dizzy, never lets me pick up my mammoth bag, and came to light up my empty house on Diwali.

11. Nidhi and Amna have asked me about experiences that made me feel seen in class. Once Nidhi asked me about my experiences with doctors, that let me burst into tears and offered a cathartic release I didn’t know I needed. Amna stopped another person in class from interrupting me when I really had to leave.

12. My peers Aditi, Janhavi, Niyati, Tejal, Kavya at my postings, have always covered for me when I am on sick leave.

13. My family to not bother me with worrisome familial affairs to try not to stress me out.

14. The institutions I have studied in have tried to accommodate my abilities, keeping in mind my illness. 

15. Moomal and Mohit do this thing, where they try to get others in the places they have invited me to, to be sensitive towards me, like they are looking out for me and protecting me in the outside world.

I am grateful for how much support and kindness I have found that enables me to live my life as someone with a chronic illness.

Featured photo by Irina Iriser from Pexels

Enough: An IBD Poem

Enough

By Divya Mehrish from New York, USA

What if I told you the spine 

is oblong like a domino,

that the body is a memory

that loses itself and keeps

losing itself like a ripple

that echoes across a glassy

mirror of water until the sun

blinds its shrinking radius

into silence. What if I told

you that you have only been

taught the shape of your hips,

that what you see in the hum

of your reflection is not what

you are but what you could have

been. What if I told you the gut

is a planet and your torso is orbiting

a sun it cannot find. What if I told

you the human skeleton knows not 

how to forget pain, that it touches

itself gingerly, as if its entire life

has been permanently bruised. 

What if I told you reminiscence 

exists as a light year—the star 

exploded centuries ago, but from 

where you sit, its serrated frame 

flames into the swollen center 

of your fickle vision. What if I told 

you, softly, that you are enough? 

You are enough. What then?

---

Featured Photo by Johannes Plenio by Pexels.

Reactions and Opinions about IBD: Addressing Misconceptions

Reactions and Opinions about IBD: Addressing Misconceptions

By Mahder Ayalew from Ethiopia

It can be frustrating when people don't understand or believe in the reality of my condition. I have encountered various reactions and opinions, some of which are misguided or ignorant. Being told that my illness is some kind of satanic problem is not only offensive but also shows a lack of understanding about the nature of inflammatory bowel disease (IBD). IBD is a chronic autoimmune condition that has nothing to do with supernatural forces or spirits. It is a real, physiological condition that requires medical attention.

Others may suggest that my condition is all in my head and that I should simply think positively or not dwell on it too much. While a positive mindset can certainly help in coping with any chronic illness, it is important to recognize that IBD is a complex and unpredictable condition. It is not something that can be cured by positive thinking alone. Medical treatment and management are crucial for maintaining my health and preventing flare-ups.

There are also those who believe that there must be a definite cure for my condition. While medical research is constantly advancing, there is currently no known cure for IBD. It is a chronic condition that requires lifelong management. Statements suggesting otherwise can be disheartening, as they overlook the reality and challenges of living with a chronic illness.

Being told that I am unfortunate because of my condition can also be disheartening. While I understand that IBD has its challenges and affects my daily life, it does not define me as a person, nor does it lessen my worth or happiness. I choose to focus on the things I can control and find ways to lead a fulfilling life despite the limitations imposed by my illness.

There are those who express concern about the long-term effects of medication and the idea of relying on medication at a young age. It is understandable that people may worry about the potential side effects of medication and the impact it may have on my overall health. However, in consultation with my healthcare team, I have made informed decisions about my treatment plan. I understand that medication is necessary to manage my condition and prevent further complications. It is essential to prioritize my health and well-being above any concerns or judgment from others.

Living with IBD has taught me resilience, empathy, and the importance of self-care. While I have encountered different reactions and opinions about my illness, I have learned not to let them define me or affect my journey towards maintaining good mental and physical health. I choose to focus on finding solutions that work best for me and living a fulfilling life despite the challenges posed by my condition.

Featured Photo by Pixabay from Pexels

Found in the absences

Found in the absences

A poem about how invisibly illnesses may not be seen on the surface, but can be found in the absences.

By Tanisha Singh from India

In hidden corners of the canvas, tales unfold,

Where visible masks give way to stories untold.

A symphony of whispers, a dance of veiled pain,

In the labyrinth of unseen, where shadows wane.

A wrinkled shirt, a faltering gait's embrace,

Each tremor of pen, a chronicle of grace.

Timelines amiss, assignments delayed,

Life's fabric frayed, in stitches unsplayed.

A diet selective, encounters evaded,

A world in turmoil, inner battles paraded.

Disheveled tresses, chambers unkempt,

Edges unsewn, where emotions are kept.

Absence speaks volumes, silent cries persist,

Invisible battles etched where eyes insist.

For to be witnessed in struggle's embrace,

Is to breathe in a world where one finds their place.

In realms veiled from sight, stories take flight,

In whispered metaphors, darkness and light.

No need for solace, nor false optimism's balm,

Just acknowledgment true, in the realm of the calm.

These nuances of life, a tapestry so complex,

Where wearied hearts are marked with scars and vex.

Yet in the quiet understanding, souls entwine,

A lifeline of compassion, humanity's sign.

So let us peer beyond the surfaces so plain,

Embrace the hidden stories, the depths of strain.

For in seeing those battles, courage finds its stead,

In this cryptic narrative, where truth is softly spread.

---

Featured Photo by Paula Schmidt from Pexels

The Holiday Gatherings with IBD

The Holiday Gatherings with IBD

By Linda Yoo from Washington, USA

Holiday gatherings can be filled with not only excitement, but also anxiety. Sometimes at holiday gatherings I spend time with those who are closest to me; however, there are times when I spend long periods of time with those I do not frequently see. Awkward conversations and unfamiliar places can be a part of the holidays. Especially with holiday travel, it can be a bit hectic and frustrating with airports having long lines and packed planes. But overall, I always enjoy spending time with friends and family. Depending on my dietary needs and IBD disease state, my requests and accommodations might change. But for the most part, I try to keep to the following tips and tricks for holiday gatherings.

My tips & tricks for holiday gatherings:  

Communicate my food accommodations with the host directly and work something out, or offer to bring my own dish to the gathering. 

• Sometimes hosts have trouble accommodating unfamiliar dietary restrictions; it can be helpful to give examples of items I might enjoy and brainstorm with them.

Communicate with others my boundaries that keep me emotionally, physically, and mentally safe. 

• “I need to nap. I will meet you later for dinner.” 

I do not feel the need to share any information I am not comfortable with sharing. My business is my business. 

Try to prepare early, whether it is buying or wrapping gifts.

Find a place in the gathering location where I can just disappear for a bit to relax, gather my thoughts, or hide from others. Sometimes, I just need some time alone or want to escape from the constant conversations. 

If I am in a flare…

• I will pack my “flare bag,” which includes an extra pair of under garments, pants, deodorizer, wipes, and any medications. 

• Depending on the gathering, if anyone asks why I changed my pants, I either tell them what happened, or I just say I got a stain on my pants from accidentally spilling my drink-oops!

• I will ask the host if I can use another/more private bathroom. 

If I am traveling…

• Find some activities and time at my destination to spend by myself or someone I am comfortable around.  

• Drinking coffee while walking around the lake

• Bring something that reminds me of home. 

• A pillow cover that smells like home 

• Prepare for the holiday travel rush, and have a backup plan. 

• Pack any IBD medications and a “flare bag” just in case.

---

Especially as the holidays get closer, I find that hosts of holiday gatherings can be stressed. To help everyone prepare, it is crucial to communicate with others about any requests and needs early. I have always struggled with asking for help or accommodations because I feel like a burden. I have come to realize that my comfort and safety are paramount! From my experience, hosts of gatherings want to make sure every guest is taken care of. It is so important to remember that everyone deserves to have a safe, fun, and relaxing holiday!

Featured Photo by Margerretta from Pexels

Advocating for IBD Patients in Washington, D.C.: A Journey Towards Improved Healthcare

Advocating for IBD Patients in Washington, D.C.: A Journey Towards Improved Healthcare

By Karen Mancera from Florida, USA

In the heart of our nation's capital, I had the opportunity to bring the voices of Inflammatory Bowel Disease (IBD) patients and the medical community to the forefront. As both an IBD patient and a researcher, I had a unique perspective to share. Together with multiple dedicated gastroenterologists and several other patients, we ventured to Washington, D.C., to advocate for increased accountability from insurance companies, reduced prior authorizations, increased research funding, and enhanced support for healthcare professionals.

The Call to Action

For those unfamiliar with IBD, it is a chronic and often debilitating condition that affects millions of individuals worldwide and its incidence continues to increase. Managing the disease is a lifelong commitment, involving a complex blend of medications, surgeries, and an array of physical and emotional challenges.

Over time, one thing became increasingly clear to me: the healthcare system could do more to support IBD patients and the professionals who care for them. This realization led to the decision to advocate for change in the heart of American politics.

Preparing for the Journey

Our mission to advocate for IBD patients was planned by the American Gastroenterological Association (AGA) during their annual leadership summit. Joining me were several passionate social media advocates and expert gastroenterologists who had seen firsthand the challenges faced by their patients and their staff.

Before our scheduled activities, we participated in a media training to complement our advocacy efforts in our local communities. AGA also prepared us with extensive research and data to support our message, emphasizing four critical areas for improvement: increased accountability from insurance companies, reduced prior authorizations, increased research funding, and enhanced support for healthcare professionals.

Meeting with Representatives

Armed with our resources, we had a series of meetings scheduled with congressional representatives’ staff. Sharing our first-hand experiences, we discussed the immense hurdles faced by IBD patients and the healthcare community, while underscoring the necessity of change.

Our stories focused on the crucial need for increased research funding to advance treatment options and understand disease etiology. We highlighted that research is a lifeline for patients who often exhaust all available treatment options. We asked our representatives to advocate for greater financial support and press for transparency on decisions imposed by health insurance companies.

Reducing Prior Authorizations

One major roadblock in the treatment process for most patients is prior authorizations. These require physicians to obtain approval from insurance companies before certain treatments or medications can be prescribed. The result is often frustrating delays and complications.

Our plea to reduce prior authorizations resonated with our representatives. We explained how this measure could streamline the treatment process, giving patients quicker access to the care they need, and providing doctors with more flexibility to determine the best course of action. Our message was clear: reducing prior authorizations would improve the quality of life for IBD patients and make the jobs of healthcare professionals more manageable.

Enhancing Support for Healthcare Professionals

This was also an opportunity to advocate for the unsung heroes in the IBD community: healthcare professionals. The demands of treating patients are significant, and their job is made even more challenging by endless administrative tasks and insurance hurdles.

The gastroenterologists who joined us, recounted their experiences with burnout and the vital need for more support and resources. We urged our representatives to explore solutions, such as addressing issues with medicare reimbursements, and reducing administrative burdens.

The Power of Collaboration

Our journey to Washington, D.C. exemplified the power of collaboration and advocacy. We brought our personal stories, our dedication to patients, and our collective experiences to Capitol Hill.

The result was a promising commitment from several representatives who pledged to champion our cause. We found common ground, recognizing that improving the lives of patients requires a multifaceted approach involving legislative changes, increased research funding, and better support for healthcare professionals.

A Promising Future

Advocacy is a long-term and challenging endeavor. However, it was a significant step towards a brighter future for IBD patients and their healthcare providers. The path ahead may be challenging, but with the dedication and resilience of individuals and organizations who share our vision, we have every reason to be optimistic. Our voices were heard, our message delivered, and our commitment reaffirmed.

Featured Photo by Anna Lowe from Pexels

Art Therapy Interventions for IBD

Art Therapy Interventions for IBD

By Divya Mehrish from New York, USA

As a result of the unpredictability of their debilitating symptoms, inflammatory bowel disease (IBD) patients often struggle with severe loneliness and isolation. Therapeutic interventions focused on community-building can create safe spaces for patients, who can develop meaningful connections with others battling similar issues. Support groups can help patients maintain a “healthy emotional balance.” (1) While some groups are dedicated to discussing difficult experiences in explicit ways, group drama therapy and online expressive arts therapy (EAT) can “better…serve” patients who want to experience shared empathy without having to focus on the negativity of their diseases. (2) The collaborative nature of joint performance therapy provides a low-stress and “playful form of support” in which patients can lean on each other as they step outside of themselves, temporarily embodying characters and identifying a new sense of self beyond their disease identity. (3) Moreover, drama therapy deliberately integrates psychotherapeutic approaches. (4) However, community drama therapy relies on continuity and the establishment of a consistent group of role-players in order to maintain a trusting space in which participants feel comfortable taking these risks.

Conversely, EAT can be integrated into scalable virtual therapy platforms that are accessible to many individuals at once. (5) Actively-flaring patients who cannot travel to clinics for in-person sessions can still commit to online EAT. Ultimately, it is consistency that is most critical to a patient’s ability to maintain remission—not whether the therapy takes place in-person or online. While there has been significantly more research conducted on music and visual arts interventions for patients with chronic diseases, in-person drama therapy and online EAT offer patients the unique opportunity to liberate themselves from the constraints of their illness identities and take part in an immersive role-playing experience that integrates mind and body.

Featured photo by Shiva Smyth from Pexels

---

References

“Depression and Anxiety,” Crohn's & Colitis Foundation, accessed February 5, 2023, https://www.crohnscolitisfoundation.org/mental-health/depression-anxiety.

 Lora Williams, “Integrating Expressive Arts Therapies into Facilitated Online Therapy Groups for Adults: A Review of the Literature,” DigitalCommons@Lesley (Lesley University, May 2022), https://digitalcommons.lesley.edu/expressive_theses/401/.

 Molly Weinberg, “Using Community Dr Using Community Drama Therapy To Support Adults with Crohn's Disease and Ulcerative Colitis,” DigitalCommons@Lesley (Lesley University, March 2020), https://digitalcommons.lesley.edu/expressive_theses/356/.

 Ibid, 9.

 Lora Williams, “Integrating Expressive Arts Therapies into Facilitated Online Therapy Groups for Adults: A Review of the Literature.”

Another summer to remember as an IBD camp nurse

Another summer to remember as an IBD camp nurse

By Linda Yoo from Washington, USA

In the summer of 2023, I returned as an IBD camp nurse.

IBD camp is one of my favorite events of the year. My experience at camp the year before really changed my perspective on the importance of my work in IBD research and the need for safe places for people with IBD to be themselves. At camp, we do not need to explain much; we all “just get it.” There is nothing weird about taking medications, needing a break, going to the bathroom, and listening to your body at camp. The beauty of camp is really our connection with IBD, whether it is personal or professional, and our empathy for one another. 

This year was particularly special because it was after the pandemic. We had Mike McCready from Pearl Jam, come share his story about IBD and answer questions from campers. He even stayed to gift and sign records, and take photos with the campers. It was special for young campers to see someone who is famous have IBD.

Also, this year, the campers could interact with one another more. Although we were cautious, the fears of Covid-19 were no longer looming over us. We had a larger healthcare team that consisted of a range of professionals, such as dietitians, nurses, physicians, and mental health counselors. Everyone played a key role in the health of our campers; I found it interesting to learn about the different ways our skill sets could be used to tackle health problems.

Throughout my time at camp, I was reminded of the importance of creating a multidisciplinary healthcare team to treat and manage IBD. Every person with IBD deserves a team that can help address multiple aspects of health and life! I learn something new every year at camp, and I once again leave IBD camp with beautiful memories!

Featured photo by mododeolhar from Pexels.

5 Things I've Learned Living On My Own

5 Things I've Learned Living On My Own

By Laurel Dorr from Maine, USA

I have been away at college for the last couple of months, and although I am living semi-independently in a dorm, it’s the first time I have lived away from my parents.

Below, I talk about 5 reflections and lessons that have come up as I learn to live with inflammatory bowel disease (IBD) in a new environment.

1. What you need is not “too much.”

Fortunately, my college has provided several crucial housing accommodations for me. Yet I have found myself avoiding eye contact when people asked me about my roommate (I have a single room), or hesitating to mention the attached bathroom when someone asks about my room. I kept unconsciously feeling like these were awkward details, or even like I was “bragging” about my living situation.

But these accommodations, along with several others, have made my life so much more manageable. And if anyone has a problem with it, they have never said so to me. Don’t let fear or shame keep you from asking for what you need. I can’t imagine what my life would look like without these supports.

2.  It’s okay to be alone. 

I have often felt out of place here, for a number of reasons; not least because I am a transfer student, and slightly older than a typical undergraduate. There are also health concerns to consider: for instance, I can’t safely do things many of my peers do, like drink alcohol, go to crowded parties, or even stay out late. (No judgment against those who can!)

For one reason or another, I haven’t forged many deep connections or friendships yet, and frequently find myself studying or eating at the dining hall alone. But, I don’t see it as time wasted.

Instead, I have used this time to get used to being alone, and focusing on self-care. My body is experiencing just as much upheaval in this new environment as my social life is, and taking the time to acclimate and get comfortable with it has been beneficial to my health. I will find the right people eventually—but for now, my attention is where it needs to be.

3. However… part of self care is doing what’s best for you.

Even when it’s uncomfortable. When I talk about being alone, I don’t mean to say that I haven’t tried new things or put myself out there. I know that it is easy for me to self-isolate. Sometimes, it was even necessary, when I was sicker than I am now. But that isn’t always best for me. So while I cherish my alone time, I also try to step out of my social comfort zone.

For example, I usually set aside time for at least 1-2 campus activities (clubs, events) per week. In general, I also avoid eating or studying in my dorm room as much as possible—even if that just means reading in my floor’s common/lounge room, some days. Baby steps!

4. Doing the hard things is just as important as resting. 

I know I need time to rest and recharge, but it has taken me awhile to get on a good schedule and routine. College classes are hard enough, but living semi-independently makes it even more challenging. For instance, taking time each week to do things like laundry and cleaning, walking some distance to dining halls and classes across campus, attending office hours and extracurriculars—all of it builds up, and usually takes more time than I anticipate.

What has helped me is cliché, but true: setting up a schedule, and sticking to it. If I put off a difficult homework assignment until the last minute, it ends up taking away from my relaxing time in the evening, which makes the next day that much more exhausting, and I start putting off even more work. It’s a difficult cycle to break, but the way I feel and function when I manage my time well makes it worthwhile.

5. Make your space somewhere you want to spend time. 

I have also found it helpful to make my space feel refreshing and comfortable. Although I try not to spend too much time in my room, that’s not always possible. Some days, my IBD symptoms make it harder to leave.

Rather than let my environment add to that stress, though, I make sure to keep my curtains open and my space tidy; I have decorated with nature-inspired themes, like potted plants, artificial vines, and floral bedding; and I made sure to fill the room with cozy items, like a soft area rug and plenty of pillows.

These are just a few examples of how I manage my IBD within college life and living (more or less) on my own. However, it is an ongoing learning process for me. What have you learned about living on your own with IBD?

Featured photo by Ja Kubislav from Pexels.

Not only a doctor, but a dear friend too: An IBD patient's perspective

Not only a doctor, but a dear friend too

By Mahder Ayalew from Ethiopia

Medical care is a fundamental human need and patients should feel comfortable when seeking medical attention from doctors. However, this is often not the case as most patients find it challenging to open up about their health issues. In this article, as I promised in my very first article (Can I be happy after a Crohn’s diagnosis? I say, yes you can), I will narrate my experience with my doctor who assisted me in tackling a health problem related to Crohn's disease and helped me to improve my lifestyle. I will emphasize the importance of the doctor-patient relationship in ensuring successful treatment outcomes and acknowledge the effort made by doctors in treating us as friends rather than just names on a paper.

For a long time, I had been afraid of consulting doctors. Being in their presence triggered extreme fear, making it difficult to communicate my health problems effectively. This fear resulted in me frequently avoiding medical attention until the situation necessitated immediate attention.

However, all this changed when I met my current doctor. He is a compassionate and understanding person who put me at ease and made me feel comfortable around him. He always took the time to listen to me without judging, and this made me feel that I could trust him with my health concerns.

My doctor focused on building a good rapport with me, which made our interactions not intimidating. He understood that patients come first, and he always took his time to explain the reasons for different tests, medications, and the importance of complying with the treatment regimens. He ensured that I understood the processes and reasons for each step of my treatment.

My doctor realized that fear was a significant obstacle to my healing, and he went above and beyond to ensure that I felt at ease during my consultations. He encouraged me to speak up about my worries and any issues that I may have faced during the treatment process.

My doctor's dedication and compassion were instrumental in helping me to overcome my fear related to doctors. I have become more confident in seeking medical attention, and I have started taking responsibility for my health.

The relationship between patients and doctors is an essential aspect of successful medical treatment. Patients must feel comfortable trusting their doctors with their health, and doctors should nurture this trust by treating their patients with compassion and empathy. My experience with my doctor was transformative, and I would like to thank all doctors out there who treat us with respect and care for our well-being. The doctor-patient relationship can make all the difference to a patient's healing journey, and it is a vital component of the medical profession.

Photo by Savvas Stavrinos from Pexels.