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

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.

Invisible Echoes of Time

By Tanisha Singh, India

Amidst the tapestry of life's embrace,

In shadows woven, subtle grace,

A dance unseen, yet deeply felt,

A yearning heart, in silence dwelt.

The symphony of youth's sweet tune,

Sings melodies that soar and swoon,

Yet in the wings, a quiet ache,

A space where dreams and pain partake.

A canvas painted, hues askew,

A masterpiece, both old and new,

Brushstrokes of strength, resilience true,

Yet some days dim, the colors few.

Whispers of echoes softly speak,

Of battles fought in shadows' creek,

To face the sun, or fade away,

The choice is made with each new day.

In chambers deep, the secrets lie,

A silent struggle, veiled in sighs,

The journey of a hidden fight,

To rise above, reclaim the light.

Oh, missing fragments, lost in haze,

In twilight's grasp, where moments graze,

The heart's desires, suspended, wait,

For life to beckon, to liberate.

So let the world unveil the cloak,

Embrace the scars, no shadows evoke,

For in the struggle, truth resides,

A tapestry of strength abides.

"Invisible Echoes of Time," they say,

In missing moments, hearts hold sway,

The dance of life, both wild and slow,

In absence found, we bloom and grow.

Featured photo by Him_83 from Flickr.

From the “I” to the “We”: Bridging the Audience Divide

By Divya Mehrish

The HUMIRA TV Commercial, “Not Always Where I Needed to Be,” follows the story of a young female bandleader struggling with Crohn’s Disease who achieves remission because of choosing HUMIRA as her new medical treatment. Narrating her own story throughout the advertisement in the first-person voice, this Crohn’s patient gains credibility and wins the audience’s trust early on. Kairos—the contingencies of time and place—shape the rhetorical purpose of this direct-to-consumer ad by addressing the urgency for treatment. According to the CDC, about three million adults reported an inflammatory bowel disease (IBD) diagnosis in 2015, a significant increase from two million in 1999. With no cure for Crohn’s, it is critical to connect patients with different drugs that may support their unique health journeys.

Given that Crohn’s Disease is not a widely discussed illness, impacting only 1.3% of American adults, the pharmaceutical company must make a wide-reaching and exciting case for why Crohn’s is worth treating with HUMIRA. The commercial faces a significant rhetorical challenge: to appeal equally to existing Crohn’s patients and members of the general public, distinct groups that can both act on the pharmaceutical company’s exigence—to sell more HUMIRA. By constructing a memorable narrative arc that accurately represents the experiences of both a Crohn’s patient and the general public, with an emphasis on social dynamics, the ad satisfies both constituencies. With a clear opening and end resolution, the commercial’s story arc is hierarchically structured to convey a message of hope and optimism to all its viewers, thereby expanding its potential reach. By emphasizing the relevance of HUMIRA’s potential for those who suffer with IBD and those who do not, the commercial convinces Crohn’s patients to take agency over their health by switching to HUMIRA while also urging relatives or friends of the patient to help them make this choice.

The ad’s opening portrayal of the social repercussions of a Crohn’s flare successfully appeals to both IBD patients and the public by sensitively showcasing the patient’s pain while framing the scene within a community context familiar to any viewer. The ad begins by following the protagonist’s sudden departure from three group settings associated with her role as the lead singer in her band: a recording booth, band lunch event, and stage performance. Each shot contains similar elements (e.g., woman clutching her abdominal region, wincing in pain, and inhaling sharply) that suggest her flare-up is inhibiting her participation in social activities. Although every Crohn’s patient experiences different symptoms, abdominal pain is common. Therefore, a Crohn’s patient watching this ad could relate to the protagonist’s physical experience. Moreover, each shot showcases her emotional isolation from her group as well as a tinge of guilt she feels for letting her group down, consequences of flares most patients can directly relate to. Blurring out her peers, the shot focuses on how the woman’s pain makes her feel isolated. This sensitive representation of IBD, which holistically considers both the physical and emotional consequences of a flare-up, allows a Crohn’s patient viewing this ad to feel empathized with, thereby contributing to the pharmaceutical company’s ethos. 

A different quality of this opening sequence appeals to the general audience: the fact that the protagonist plays a key role within a larger group setting. Any member of the public understands the pivotal role of a bandleader within a band—she holds her group together. The ad’s audience can therefore reach the logical conclusion that in her absence, the band falls apart and cannot create new artistic work. While a non-Crohn’s patient may not be able to empathize with severe intestinal pain, the individual can relate to themes of community, teamwork, and collaboration. Thus, when the ad reveals how concerned the group members appear each time the woman’s health forces her to step out of the room, the general audience understands this feeling. As a result, the commercial successfully appeals to relatives, friends, and colleagues of a Crohn’s patient who are impacted by the individual's ability to contribute their healthy self to their lives. By centering the ad’s narrative around a group experience stunted by the symptoms of the one member with Crohn’s, the ad answers the implicit audience question “why should I care about HUMIRA if I don’t have Crohn’s myself?” and paves the way for the central question: “How can I, a Crohn’s patient, get to where I want or need to be in life?” (as well as the parallel question: “How can I, someone in the Crohn’s patient’s life, help them reach this point?”). HUMIRA, the ad goes on to reveal, is the answer. As the protagonist states, HUMIRA successfully targets patients whose symptoms have not been relieved by other medications. HUMIRA, this claim suggests, can be a patient’s new solution—a success story amidst a history of failed treatments.

Despite FDA requirements that drug ads address all deleterious risks, this commercial’s multifaceted conclusion successfully reaches both Crohn’s patients and the general public by layering optimistic visual elements over the serious voiceover listing of side effects to persuade both parties that HUMIRA’s benefits outweigh any risks. In selecting an older, monotone voice to rapidly list HUMIRA’s side effects as opposed to the airy voice of the protagonist, the ad’s creators encourage viewers to tune out. While the side effects are listed, the visual narrative of the young woman continues, now focused on her HUMIRA-granted remission and triumphant return to normal life, full of invigorating music, young, smiley people, bright clothing, and positive vibes. In the world of this ad, the standard of “normalcy” is represented by the protagonist’s ability to participate in her band, which in turn serves as a metaphor for an IBD patient being able to contribute to society. Healthy enough to actively engage in music again, the woman begins singing with her band, a scene engaging enough to distract the viewer from the side effects. Layered over the robotic voiceover, the band’s upbeat rock music crescendos, nearly drowning out the voiceover. The ad’s cyclic narrative also helps meet the challenge of a Crohn’s patient reconciling the opposing elements of HUMIRA’s negative side effects with the display of positive and vibrant experiences made possible through HUMIRA. While the beginning twenty seconds of the ad showcased how the protagonist’s active Crohn’s Disease negatively impacted both her life and the people around her, the commercial’s last scenes offer positive resolutions to each of the situations the ad initially introduced. For example, the woman reenters the sound booth where her band was practicing, steps back onto the stage where her band had been performing, and rejoins her band for lunch. This circular storytelling ties up the strings of the commercial’s plot while establishing a direct cause-and-effect relationship, which, when simplified, implies: “if you take HUMIRA, your life can be normal again.” This optimistic conclusion, enhanced by the engaging acoustics, relieves a Crohn’s patient’s concern over the health risks of switching to a new biologic treatment such as HUMIRA. In the last five seconds, the protagonist’s voiceover reemerges to urge Crohn’s patients to ask their gastroenterologists about HUMIRA, galvanizing audience members struggling with Crohn’s Disease to take initiative over their own health. Now that the protagonist has gained the audience’s trust, when she claims that the “majority of people on HUMIRA saw significant symptom relief and many achieved remission in as little as four weeks,” adding great emphasis to the word “significant,” the audience’s natural reaction is to believe her. This statement appeals to logos because it presents the possibility of (long-term and sustainable) remission: a logical reason to at least give HUMIRA a try. Unlike other illnesses that are associated with only one or two standard treatments, there exists a wide variety of treatment options for IBD, each of which work differently depending on a patient’s demographics, clinical history, genetic makeup, and overall health. Therefore, a patient would not feel as though they were challenging the status quo if they were to bring up HUMIRA to their doctor but would instead feel empowered (by the ad) as they take initiative over their own treatment process. Given how little agency and control individuals with IBD typically feel over their health, this level of active encouragement would likely appeal to a Crohn’s patient and counteract any initial hesitation they may feel around spearheading a conversation with their healthcare provider about a new treatment path.

By structuring the ad to let the protagonist both begin and conclude the message, the commercial’s creators ensure that the Crohn’s patient’s personalized story—one of hope and success—is what any viewer is left remembering. The ad’s strong and streamlined narrative urges any audience member, no matter whether they have Crohn’s or not, to leave this commercial knowing they have witnessed a human story, and to feel touched by it. Maintaining a focused narrative through the ad allows the pharmaceutical company to shield their exigence to sell more drugs within a compassionate effort to improve the lives of Crohn’s patients. 

“With HUMIRA, remission is possible,” the protagonist announces at the end of the ad, seemingly speaking from experience. The protagonist also urges her fellow Crohn’s patients to “be there for you and them” in the final five seconds. This statement once again reminds viewers that HUMIRA has the potential to not only relieve a Crohn’s patient’s IBD symptoms, but to also allow the patient to participate fully in the lives of those around them. 

This advertisement is not just the story of a Crohn’s patient, but also the story of the non-Crohn’s people around her. This narrative, while narrowly defined and following the specific experience of a protagonist with a distinct health condition, serves to showcase the broader implications of an individual’s health problems on society. By the end of the ad, the protagonist’s early claim that “with moderate to severe Crohn’s Disease, I was there, just not always where I needed to be” becomes, from the lens of an enlightened viewer, “...just not always where we needed to be.” The viewer, even if they do not have Crohn’s, now feels part of this ongoing dialogue around IBD treatment and the societal repercussions of one individual’s poor health. Thus, this ad ultimately unites viewers—both Crohn’s Disease patients and the public—over the ultimate goal of helping IBD patients achieve remission through HUMIRA, not only for their personal health journeys but for the overall benefit of society.

Featured photo by Tuur Tisseghem from Pexels.

References

Centers for Disease Control and Prevention. (2021, July 9). IBD: Data and Statistics. Centers for Disease Control and Prevention. Retrieved October 2, 2021, from https://www.cdc.gov/ibd/data-statistics.htm. 

Belluz, J. (2015, September 29). Why prescription drug ads always have that absurd list of side effects at the end. Vox. Retrieved October 2, 2021, from https://www.vox.com/2015/9/29/9414145/direct-consumer-advertising-pharmaceutical-regulation. 

Embracing My Identity: Finding Respite and Transience in the World of IBD and Disability

By Tanisha Singh

“‘What would it mean to esteem the disabled body for what it is?’ Sieber argues that current theories of the body, to the extent that they privilege empowerment, pleasure, and physical adaptability, fail to confront disability in any transformative way and cites this representational absence as one factor in the social and political neglect of the needs and perspectives of people with disabilities.” (Susannah B. Mintz, Unruly Bodies: Life Writing by Women With Disabilities, 2007, p.3) 

Living with inflammatory bowel disease (IBD) has been a journey filled with immense challenges, both physical and emotional. Throughout this personal experience, I have discovered the solace and empowerment that come from considering myself a patient and embracing the identity of disability. In the face of the impossible demands of the modern world, these labels have provided me with respite, allowing me to prioritize self-care and find understanding amidst the chaos. Simultaneously, I have grappled with the complexities of identifying with disability and recognizing its transient nature as my abilities fluctuate from day to day. Most importantly, I I have arrived upon a sense of agency in being able to honor my challenges of living as a chronically ill person, with each time, that in a work interview, to a friend, to a new date or just about anyone in the world, that I have been able to say out loud that I am disabled in this way or these are my subjectivities that need to be acknowledged in how my lived experiences shapes this interaction that we are about to have. And each time, it has taken courage. The very breath of uttering this has stirred up a fog in my chest as I speak my truth to the other. 

Finding Respite in Patienthood and Disability

As someone living with IBD, the constant battles with pain, fatigue, and the unpredictable nature of the disease have often left me feeling overwhelmed and exhausted. However, I have found solace and a sense of respite in embracing the identity of a patient. This acknowledgment of my condition has allowed me to prioritize self-care without guilt or shame. It has provided me with a tangible validation of my experiences, fostering a deeper understanding of myself and opening doors for support from both within and outside my community.

The Impossible Demands of an Ableist World

The demands of the modern world can feel unattainable and suffocating, particularly for those of us with chronic illnesses like IBD. The pressure to meet societal standards of productivity and success often exacerbates our symptoms, leaving us feeling inadequate and isolated. Identifying with disability has granted me the respite I need from these impossible demands. By reframing my experiences within the context of my condition, I have found relief from the relentless pursuit of an ideal that doesn't consider the unique challenges I face daily.

The Nuanced Challenges of Identifying with Disability

Navigating the identity of disability has been an intricate and deeply personal journey. At times, I have embraced the term wholeheartedly, finding strength and solidarity in connecting with a larger community of disabled individuals. Through this identification, I have gained a profound sense of belonging and discovered opportunities to advocate for change and inclusivity. However, there can be moments when one would hesitate to embrace the label due to the stigma and limitations it may carry, fearing being defined solely by my limitations in an ableist world, overlooking the resilience and strength that lies within one.

I’m reminded of a text by Susannah B. Mintz (2007), who talks about how viewing the body as a mere physical anatomical entity, makes it even more challenging for those with a disability or illness to openly articulate and express the pain and frustrations of impairment, the acknowledgement of which would play into the oppressive narrative which would consider such an admission to be evidence of disability being about physical and personal limitation after all. As a consequence, most of the disability theories focus on impairment as both a lived experience and an effect of socio-political discourse. However, the question of seeing the disabled or chronically ill body in its entirety (warts and all) perhaps continues to remain complicated. 

Embracing the Transience of Disability

I feel, however, that there are days when one is more disabled than other days, and also days of great ability in a chronic illness. For me it is always a nuanced experience dependent on multiple factors that change constantly. It has been helpful for me to cultivate a view of disability as a transient state, a spectrum of different changing capacities each day, each hour, and each minute. And I wish others around me would understand the changing nature of it all. Sometimes there is a pressure to fit into a perception of being chronically ill, chronically, or of being absolutely healthy when in remission. Both don’t tell the complete picture. There are moments of great ability in one moment followed by feeling greatly disabled the next. From one task to next. It’s personal and it’s all relative. And I wish I had the right to assert my freedom to live as per my subjectivities (transient and ever changing subjectivities) rather than by conventional standards of consistent “normality.”

One remarkable aspect of living with IBD, and many other chronic conditions, is the ever-changing nature of disability. Some days, I find myself more abled, allowing me to engage in activities that would typically be challenging. This fluidity challenges the notion of disability as a static, permanent state. It teaches me to recognize and appreciate the transience of disability, acknowledging that my abilities can fluctuate from day to day. Embracing this transience has offered me a broader perspective, allowing me to celebrate the victories of each day while remaining aware of the potential challenges that lie ahead.

My personal journey with IBD and disability has been a profound exploration of identity, resilience, and self-discovery. Embracing my identity as a patient and a person with a disability has provided me with respite from the impossible demands of a very ableist world. It has allowed me to prioritize self-care and find validation in my experiences. However, navigating the complexities of identifying with disability has been a deeply personal process, with moments of great isolation. Nevertheless, recognizing the transience of disability has empowered me to embrace the fluidity of my abilities whether or not it is validated by the world, fostering a nuanced understanding of my own journey and a deep personal relationship with myself and my body.  I continue to navigate the challenges of IBD, finding strength in my evolving identity and embracing the respite and transience that patienthood can sometimes bring, if at all.

Featured photo “Untitled” by Lisa Toboz from Artsy.

References
Mintz, S. B. (2009). Unruly Bodies: Life Writing by Women with Disabilities. Chapel Hill, NC: University of North Carolina Press.

The Rollercoaster of Emotions of IBD

By Mahder Ayalew Bezabih

The experience of deep, debilitating pain from a cramp is one that can have an immediate and profound impact on both the physical and emotional well-being of an individual. The intensity of the pain can be overwhelming, leaving one at a loss for words to adequately describe its effect. It can be particularly distressing for those who strive to live their lives with a sense of gratitude, appreciating the things they have and not taking them for granted. However, the occurrence of a cramp can disrupt this mindset completely, causing a shattered sense of gratitude and leaving me feeling utterly helpless, as if there is no one to save me from the anguish.

In moments like these, it becomes difficult for me to envision a future filled with happiness and joy. The debilitating pain casts a dark cloud over any thoughts of a brighter future, making it seem distant and unattainable. This is especially true when the pain resurfaces repeatedly, as it has recently. The continuous recurrence of the pain after undergoing surgery can be disheartening, eroding any hope that things will improve or that relief will come anytime soon.

Drawing comparisons to others who may have faced even more excruciating and challenging circumstances can add a layer of guilt to the already overwhelming emotions. It is challenging to comprehend how those like myself manage their pain and hardships. Their strength and resilience can feel both inspiring and incomprehensible when one is engulfed in their own agony.

It is important to acknowledge that pain, whether physical or emotional, is a deeply personal experience. Each person's threshold and ability to cope with pain varies, making comparisons somewhat fruitless. It is equally crucial to remember that pain should not be invalidated or dismissed simply because there may be others enduring more severe or arduous circumstances. Pain is pain, and it deserves recognition and support regardless of its magnitude.

During these moments of immense suffering, reaching out for support is crucial. Whether it be seeking medical assistance to manage the physical discomfort or confiding in loved ones and professionals about the emotional toll, connecting with others can provide a lifeline in the midst of darkness. Emotional support, understanding, and empathy can help alleviate feelings of isolation and desolation. Additionally, engaging in self-care practices, such as relaxation techniques, mindfulness, or gentle exercises, may offer some relief and a sense of control over one's well-being.

While enduring such intense pain can feel insurmountable, it is vital to remember that pain does not define a person's entire life. Seeking appropriate treatments, exploring various pain management strategies, and maintaining hope for a brighter future are essential components of navigating through these challenging times. Each person's journey is unique, and it is okay to ask for help and support when needed. Remember, you are not alone, and there are resources available to help you through this difficult period.

Featured photo by Sams Wild from Pexels.

Feline Lessons in IBD Self-Care

By Laurel Dorr

Almost a year ago now, my family decided to get a cat. It had been years since we’d had a pet, but as my siblings and I are all young adults at varying stages of moving out, it was a good time for my parents to invest in a permanent companion. Through social media and the local animal shelter’s website, we found one or two kittens to consider adopting.

Once my parents got to the shelter, though, those plans quickly changed. While they briefly interacted with the grey-haired litter they went there to meet, another little orange cat distracted them. I wasn’t there, but as my parents tell it, he would shove his way in front of the other kittens to get my parents’ full attention, already intent on coming home with them.

Evidently, he was pretty persuasive. My mom likes to say that “we didn’t choose him; he chose us.” The rest is history.

At that time, I was going through a rough period with my health. Initially, it seemed like I was doing well. My IBD treatment was working great, but simultaneously, my liver enzymes went out of control. Eventually, I had to stop the medication that had worked so well - which led to my health deteriorating for several months, along with my emotional state.

That’s where our little lion man comes in (quickly dubbed Mumford - yes, an homage to the band Mumford & Sons). Whether he was cuddling with me when flares kept me home from work, or sitting outside the bathroom door and meowing at me in concern when I emerged, he was a constant presence and comfort during this time.

More recently, as my health has mostly stabilized, he has been helpful in other ways. I’ve learned a lot from him. He’s good at regulating himself, in that self-sufficient way cats have. He knows exactly when he needs to rest (even if that means crawling under someone’s bed for peace and quiet, although he prefers being around people), when to eat, when to burn off some energy. All the things I am the worst at.

Yet there is still plenty for his caretakers to do. And in training myself to watch his cues and predict his needs, I am learning to better care for myself, too. In my head, I am constantly asking, “Does he need more water? Is he getting too many treats? Is he waiting for someone to play with him?” Somehow, this has conditioned me to monitor my own needs more closely. When I’m in a mental funk, I notice myself wondering, “Do I need to get out of the house, or talk to someone? How have my eating habits been this week? Would I feel better if I got some exercise?” And just as Mumford seems out of sorts when his routine is interrupted on the weekends, I am learning to prioritize my own consistent schedule. And guess what? It actually helps.

That might be what I'll miss the most when I move into a dorm this fall. I know it’s going to be a major transition, and I could use his little reminders of these lessons. But I’m so grateful for this year with him, and this unexpected opportunity to look more closely at my self-care skills.

Featured photo by Nataliya Vaitkevich from Pexels.

The Surprising Emotional Complexity of Remission

By Laurel Dorr

No inflammation visible. Labs and biopsies clear. Looks like you’re in remission.

Like many patients, I waited a long time to hear words like that. Long enough that I wasn’t sure what remission would look like anymore. Would all of my symptoms be gone, somehow? Would I still be stressed over unpredictable flare-ups, or treatment failure? Would it mean fewer tests and procedures, less frequent medical appointments? Fewer phone calls between medical offices and insurance companies?

Some of that has been true. My follow-ups are now being scheduled in longer intervals. Most of my labs have been stable for a while now. Some of my symptoms have significantly improved, or they’re at least getting there.

But that’s not the whole story. New problems have cropped up just as others are calming down, uncovering issues adjacent or indirectly related to my IBD. Beyond that, my current treatments come with more intense side effects than I’ve had in the past, some more manageable than others. And the prior authorizations and eligibility assessments and appeals trudge on, as ever.

“Remission” has been a surprisingly emotional process. Intellectually, I’ve known for years that this is a chronic condition; but the emotional reality of that is setting in. My mindset is shifting from “we’ll fix this” to “we’ll manage this.” Emotions about my initial diagnosis, frozen by survival mode kicking in, are now resurfacing as well.

I don’t know how long this remission will last, or even what it will look like from one day to the next. After years of uncertainty, it’s a little daunting to realize this might be as close to “healthy” as I can get.

Another part of this process is becoming a new kind of patient. I have gotten used to advocating for myself - learning how to weigh treatment options, to research my condition, to ask the right questions. But in some ways, remission has been a completely new condition to grapple with. It has its own set of symptoms, whether they’re residual Crohn’s complications or side effects from my medications. Some of those symptoms are potentially treatable, but it’s a new trial-and-error process with no certain outcomes. (Plus, after years of researching and discussing IBD treatments almost exclusively, learning about completely different medications and approaches has been humbling, to say the least.)

As I described before, it requires a different emotional perspective, too. It’s one thing to advocate for yourself when everyone agrees, on some level, that you’re actively ill. It’s another entirely to ask for help when you “should” be doing fine. Whether it’s making sure I’m articulating the full impact of my lingering symptoms to my doctors, or explaining to family and friends why I still don’t feel or function “like normal,” it’s tougher to speak up.

But honestly, I'm fighting myself more than anyone. The people-pleaser in me just wants to say I’m fine, everything is fine.

Thankfully, I’ve been met with a lot of support through this process. But there’s always some fear that others won’t understand that “remission” can be more complex than it sounds. It’s not a simple narrative, but no one is going to know what’s going on unless I can talk about it.

As tricky as speaking up can be, I’ve also had some difficulty gauging how much to self-advocate. It’s a little harder to understand what I need now, or how my body is doing. Just as I had to re-learn my body when I got sick, I also have to listen for new signals from it now.

I have already found myself pushing a little too hard for answers that just needed time, or getting frustrated about problems that improved on their own. While that’s not always the case, I’m learning that I don’t have to fight every battle as strongly as I used to. Where patience could be dangerous in the past, it can actually be beneficial to me now.

All this to say, remission hasn’t been a good OR bad process for me. It’s just more complex than I ever imagined. There are still many incredible upsides, from my overall prognosis and to my daily quality of life. I’m indescribably grateful for the success of this treatment; for my body’s resilience; and for what remission means for my future, even if it’s not permanent. Simultaneously, I am learning and coping with a new stage of chronic illness, which can also be challenging.

Featured photo by James Wheeler from Pexels.

In The Skies: Traveling with IBD

By Linda Yoo

With the pandemic slowing down and summer trips starting to begin, my time on airplanes have started to increase. For a long time, air travel was the most stressful part of vacations and trips. I would dread preparing for flights due to the unpredictable nature of flights, being stuck in the middle seat, the restricted bathroom access during takeoff and landing, and the tight quarters with little room for movement. Additionally, I often experience GI distress during flights. Air pressure changes during flights can lead to increase bloating which can be painful and uncomfortable. Changes in time zones and sleep schedules often impact my mood and IBD symptoms as well. However, I feel more excited about flying after finding some activities that help manage my IBD on flights.

Some of my tips and tricks:

• Leave plenty of time to go through security and find the gate. More stress often can lead to more symptoms.

• Wear comfortable clothing that can easily adapt to different temperatures.

• Stay hydrated, prepare to carry an empty water bottle through security, and find the nearest water foundation

• Walk around the airport before the flight. Light movement can help decrease stress, boost mood, and help with relaxation.

• Bring snacks that are easy to open and fit dietary needs

• Go to the bathroom before the flight.

• Create an emergency pack, which can include as-needed medications, wet wipes, an extra pair of clothes, or even a hot pack. Try to find travel-friendly items that can help relieve symptoms quickly and can be accessed easily during the flight.

• If traveling with liquid or refrigerated medications, bring a printed prescription label and try to leave it in its original packaging (prevents spilling). Also, prepare to spend a bit of extra time through security.

• If it is a night flight, bring items for sleeping (e.g., face mask, headphones, pillow). If the destination is in a different time zone, try adjusting to the time zone a couple of days earlier.

• If needed, call the airline's customer service or disability line to request accommodations. You can request a seat with easy access to the bathroom.

• Ask for help if needed; this can be your neighbor or a flight attendant. Sometimes we need an extra hand, so do not be afraid to speak up.

• Don’t forget to breathe. Flights can be frustrating, and tensions can run high when flights are delayed or canceled. The goal is to get to the final destination safely. Having the bigger picture in mind helps pass the momentary stress from traveling.

Although flights are not my favorite part of vacations and trips, I have found ways to manage my IBD symptoms. IBD has taught me to “go with the flow,” as not everything always goes as planned. But preparing a few days ahead of my trip helps me feel more confident and less stressed. As air travel continues, I hope to continue refining my list of activities and items to make traveling with IBD easier!

Featured photo by Janiere Fernandez from Pexels.