Internalized stigma in IBD, mental health, and quality of life: A study review

by Aiswarya Asokan (South India)

Scrabble tiles spelling out “mental health” sit on a white background. A branch with leaves is in the upper right corner.

Living with IBD comes with a lot of constraints that no one prepares you for. Every time one goes through a major life transition like starting college, joining work, or getting into a relationship, adapting to the changes is never easy. It’s often difficult to fit in due to our IBD, which in turn puts us under a lot of stress and anxiety. Research indicates that bowel-related issues are a widespread cultural taboo and historically, IBD has been seen as “psychosomatic,” further stigmatizing the condition.

To learn more about this, I read a paper titled “The mediating role of psychological inflexibility on internalised stigma and patient outcomes in a sample of adults with inflammatory bowel disease.” This study was conducted to examine the relationship between ‘psychological inflexibility’ (when someone struggles to adapt to challenges, avoiding emotions or feels stuck) and ‘internalized stigma’ (when individuals adopt negative societal beliefs or shame as their own, and devalue their identity) on health outcomes. The authors looked at outcomes like mental distress (depression, anxiety, stress), health related quality of life, self-efficacy, self-concealment (hiding personal information that is distressing or negative from others), beliefs about emotions, and fatigue (physical and mental) in adults with IBD using an online survey of 382 participants.

This study suggested that:  

• Adults with IBD who had higher rates of psychological inflexibility also had higher rates of internalized stigma, negative beliefs about their emotions, self-concealment, mental distress, fatigue, and impaired quality of life. 

• Psychological inflexibility was inversely related to committed action, stigma resistance, and IBD self-efficacy.  

• Adults with IBD who had higher rates of internalized stigma also showed higher rates of mental distress, self concealment, negative beliefs about their emotions, fatigue, and poor health-related quality of  life. 

• Internalized stigma was inversely correlated to stigma resistance, IBD related self-efficacy, and committed action.  

• Participant’s age and educational level showed an inverse correlation with their psychological inflexibility. Their IBD severity (in the past 3 months), the presence of an ostomy, and their COVID-19 self-isolation status were positively correlated. 

• Internalized stigma was higher for individuals with an ostomy, those currently taking steroids, who had experienced severe IBD in the past 3 months, and who were more self-isolated, whereas educational level was inversely correlated.  

Other interesting insights from this study:  

• Individuals who face discrimination regarding their IBD, who are less able to employ ‘flexible’ responses may spend more energy avoiding stigmatizing experiences, making it harder for them to engage in meaningful activities.  

• New research indicates that general familiarity with IBD can help reduce public stigma; highlighting the importance of IBD awareness campaigns to increase public understanding of IBD, thereby reducing stigma.  

• These study findings suggest that lower levels of internalized stigma is associated with increased psychological flexibility and better patient outcomes. Modalities of therapy like ‘Acceptance and Commitment Therapy’ (ACT) – which aim to increase psychological flexibility by changing individuals’ relationship with their thoughts, feelings and behaviors – may be a helpful intervention.  

Personally, years of living with IBD have enabled me to build a circle of people where I can take my armor off. But still, going through repeated flares, body image issues, breaks from education, social isolation, and being under steroids takes a toll on my mental health and quality of living. Often the medical team's support stops once your blood counts are under control, leaving us with the responsibility of picking up ourselves and moving on with the new normal. 

Citation:

Reynolds DP, Chalder T, Henderson C. The mediating role of psychological inflexibility on internalised stigma and patient outcomes in a sample of adults with inflammatory bowel disease. J Crohns Colitis. 2025 Apr 1:. doi: 10.1093/ecco-jcc/jjaf055. Epub ahead of print. https://pubmed.ncbi.nlm.nih.gov/40168103/

Photo from “Total Shape” on Unsplash.

What It’s Like Working Through Phobias: Creating A Comfort Toolkit

by Kaitlyn Niznik (New York, U.S.A.)

Four drawings of different comfort tactics (described below) on a light purple background.

I can't remember a time when I didn't have a blood/needle/medical phobia.  I would regularly faint at the doctor's office and even talking about blood was enough to make me pass out in high school.  It wasn't a problem until I developed chronic stomach issues and was diagnosed with microscopic colitis.  All of the sudden, I was pushed headfirst into a world of doctors' appointments and countless medical tests.  It's hard enough to find answers from doctors, but fear can make you ignore your problems, making things worse.  I still struggle with this phobia today, but with the help of a therapist, I’m working through my issues.  Please seek the help of a trained professional to face your phobias in the safest way possible.  Here are several strategies I'm using to make progress facing my fears.  

A drawing of a dark purple “Encyclopaedia Anatomica” on a light purple background.

Desensitization Training/ Exposure Therapy

Desensitization and exposure therapy can start with looking at images of videos of your phobia, eventually progressing to more realistic scenarios. For instance, someone with a blood phobia might progress from viewing images to medical shows and eventually going to blood drives.  The overall goal might be to get bloodwork done, but you have to build up exposure over time to get more comfortable with your fears.  

I've been unknowingly trying to do this my whole life.  As a kid, I would reread veterinary books to expose myself to a little literary medical gore.  I would deem it a success if I didn't get woozy.  Today, medical imagery has become an inherent part of my artistic practice.  I find exposure more palatable if I attempt to explore images and procedures from a place of curiosity rather than fear.  If I'm looking at veins, I try to ask myself what colors I see under the skin.  I've progressed to the point where I can look at surgical photos of arteries and attempt to draw them without getting queasy.  It's easier for me to separate myself from a picture than a procedure happening to me, so that's where my exposure therapy has started.  

Working with a therapist, I did a deep dive on my phobias and my hierarchy of fears.  Instead of just seeing all situations surrounding blood or needles as being equally terrifying, I was able to sort them into a list of situations with varying intensity.  While younger me thought a finger prick was the worst situation possible, I now list it much lower on my list, opting to put IVs in a higher position.  It's all a matter of perspective.  By making a fear hierarchy, I was able to tackle lower intensity situations and gain confidence and resilience before braving my top fears. 

A drawing of two different chairs (one upright, and one reclining) on a light purple background. The upright chair has a red circle and line through it, indicating “no,” while the reclining chair has a yellow circle and check mark, indicating “yes.”

Keeping A Sense Of Control 

When I was little, my family had to trick me to get me in the doctor's office.  In adulthood, I tried to mimic this strategy by being spontaneous. Instead of scheduling a flu shot and worrying about it for weeks in advance, I'd wake up and decide to go that morning.  This strategy somewhat lessened my stress, but it also felt too hurried. I never had a sense of control, just urgency to get it done and over with.  It didn't leave me in a good headspace and I still found myself fretting over the possibility of getting a shot for weeks ahead of time. 

Now, I'm better prepared.  With the help of my therapist and journaling, I've made lists of what is within my control during doctors’ appointments.  I keep a “comfort bag" ready and always bring it with me to appointments.  If I need blood work, I pack my own snacks for afterwards and plan to reward myself with a sweet treat from a nearby cafe.  I also pick out my "victim” arm ahead of time based on which arm feels stronger than day.  

When it's my turn for bloodwork, I tell my nurse right away that I'm terrified and I'm a faint-risk.  I also ask for the reclining chair when possible.  It's not so upright that I'll get dizzy and slump over, but through experience, I've also found that fully lying down feels more vulnerable and heightens my fear.  A reclining chair puts me in a better headspace, so it is important that I advocate for my preferences.  Doing small things consistently and giving yourself small choices in your healthcare can help you feel more in control and you'll know exactly what to expect.   

A drawing of a tote bag and it’s contents on a light purple background. The bag is labeled “My Comfort Bag,” and next to it are a pair of headphones, a pack of tissues, a granola bar, essential oils, a worry stone, phone, and a tennis ball.

Pack A Comfort Bag, Activate Your Senses

In an effort to ground myself, I try to pack things in my bag that activate my 5 senses of sight, sound, smell, taste, and touch.  I always have these items in a bag and ready to go.  Consistency is key, so I bring them with me to all of my medical appointments.  When I’m in the waiting room, I grab my headphones and put on some music.  I also pack sensory items that are calming like fidget toys to distract myself with.  If I’m getting blood drawn, I have a tennis ball handy that I can grip, tissues for when I cry, and a snack for when it’s all over.  This kit can be any size and it should be personal to you.  Here’s a list of what I keep in my bag: 

• Snacks

• Water

• Tissues

• Tennis ball (to grip)

• Lavender essential oil

• Hand warmer

• Electrolytes packet 

• Fidget toy or comfort object (worry stone)

• Headphones for calming music or ASMR 

An image of a ‘box breathing’ exercise on a light purple background. Arrows guide you around the sides of the square, which are labeled: "exhale, hold, inhale, hold.”

Don't Just Wing It, Strategize 

Plan out your day ahead of time.  Plan to have downtime afterwards to chill, recover, and reward yourself.  I like to have a friend or family member drive me to and from appointments just in case I feel dizzy afterwards.  

Pressure therapies or tense & release exercises have also been proven to help calm the body.  Box breathing is another exercise to keep in your toolkit.  It can stop you from hyperventilating and keep you calm.  Make sure to try these techniques out BEFORE an appointment or exposure to your phobia.  Practice makes perfect and not every therapy works for every person.  Find what fits you and make a plan to tackle your phobias.

More Tools and Resources:

• How to Build an Anxiety Toolkit | JED 

• What is a Coping Kit and How Can It Help | Life Adjustment Team 

• Tomophobia: I Fear Doctors, Blood, and Needles. Now What? | Psychology Today 

• 5-4-3-2-1 grounding: How to use this simple technique for coping with anxiety — Calm Blog 

IBD and Grief

by Akhil Shridhar (Bengaluru, India)

A cup of coffee, a pen, and a napkin with the 5 stages of grief (denial, anger, bargaining, depression, and acceptance) sit on a blue table.

Each person has a unique story when it comes to their experience of coming to terms and living with IBD. What I realized after speaking to some of the patients who have struggled with the disease for quite a few years is that there is a similar pattern in our response to this life-altering event. The diagnosis, which in itself is a drawn-out process of striking out every other possible disease of the gut to finally settle on one condition, which includes countless blood tests, scans, endoscopies, colonoscopies with biopsies, like any other chronic condition, is just the beginning. When I came across the commonly used description for the stages of grief, I couldn’t help but notice the similarities.

The stages of grief are commonly described using the Kübler-Ross model, which outlines five stages that people often go through when dealing with loss or significant change. These stages are not linear, meaning people may experience them in different orders or revisit certain stages multiple times. The stages are Denial, Anger, Bargaining, Depression and Acceptance. With our diagnosis of a chronic condition, we experience a profound shift in reality that can evoke similar responses: 

Denial

Initially we struggle to accept the diagnosis, believing it to be a mistake or downplaying its seriousness. For most of us who are coming across IBD for the first time, usually without any family history, this sounds familiar. I would perhaps lean towards the latter, as a history of psoriasis, a similarly chronic condition, majorly influenced my decisions, which I would come to regret later.

Anger

As reality sinks in, we often have feelings of unfairness and frustration. This anger is usually targeted at our body, medical professions and, in most cases, our loved ones. I found myself feeling guilty of my circumstances, angry at the doctors for not understanding my concerns and addressing them, which feels ironic, and frustrated with my loved ones for downplaying the symptoms.

Bargaining

We then attempt to negotiate our way out of the situation, trying alternative treatments, lifestyle changes, or even stopping medications altogether. Due to my previous experience with psoriasis and other circumstances, I found myself slowly stopping medications. As expected, when the symptoms started flaring up again, I looked into alternative treatment that had shown good results for my psoriasis, a grave mistake which put me in the severe Crohn's category taking me years to recover from.

Depression

As we finally come to terms with the condition’s long-term implications, a sense of loss and hopelessness follows, leading to sadness, withdrawal, or a loss of motivation. Although with IBD being a disease of the gut, this just adds to the list of causes for depression for many of us.

Acceptance

Over time, we adapt and find ways to manage our condition and integrate it into our lives. We begin to accept the new normal and find strength and purpose in this new journey. Five years into this journey, I find myself here, a veteran I say to myself, with a new resolve to help others navigate theirs.

The emotional and psychological journey of adapting to a life-altering event closely resembles a grief-like path. Chronic conditions not only impact our physical health but also our identities, relationships, and goals, making the process of adjusting and coping essential. It's important to note that these stages are a framework, not a one-size-fits-all process. People grieve in unique ways, and other emotions like guilt, confusion, or relief might also play a role.

This is why advocacy can be an incredibly powerful tool to make a difference in helping individuals by providing awareness and education, building a resource network, or helping in accessing resources. It is also important that we encourage empathy and patience with caregivers, family members and society as a whole to provide the required support during these challenging times. For someone going through the journey, engaging in advocacy themselves can be transformative and empowering. On a larger scale, advocacy is also necessary for shaping policies and systems that lead to improved healthcare policies, workplace accommodations, or social programs.

I encourage everyone to seek help and, whenever possible, help out others, as getting diagnosed with IBD can be a deeply personal experience, but one should not be forced to navigate it alone.

(Image credit: marekuliasz from Getty Images)

Battling an invisible illness while everyone else plays “doctor”

by Beamlak Alebel (Addis Ababa, Ethiopia)

A person with medium tone skin and chin-length black hair stands behind a clear bubble. Their hands are pressed against the glass, as if they want to get out.

Exams are already stressful, but for those of us dealing with invisible illnesses, they can feel like an impossible battle. The pressure to perform, sleepless nights, and depression don't just affect our mind - they also affect our whole body too: and while we struggle through the pain, others think they have all the "expert" answers:

My Brother wonders, "maybe it is some unknown disease science hasn't discovered yet."

My Parents think, "it must be setan (evil spirit), we should take her to holy water."

Society assumes, "it's probably caused by her poor lifestyle or malnutrition."

Meanwhile, I am just trying to survive this exam while everyone else plays doctor.

The silent struggle of invisible illness

Living with IBD means battling symptoms that others can't see. It is a constant storm - worsening digestive system, gut motility issues, poor sleep, and one of the biggest triggers, stress. 

Exam deadlines and academic pressure can make symptoms flare up. But instead of understanding the real impact of stress on chronic illness, people jump to conclusions. They blame supernatural forces, poor diet, or anything except the real medical condition.

Why awareness really matters 

The truth is, many people don't understand invisible illness until they (or someone close to them) are directly affected. This lack of awareness leads to stigma, misdiagnosis, and people suffering in silence. We need more conversations about IBD not just in medical communities, but also in everyday life.

Invisible illnesses like IBD can be incredibly tough. Friends and family should understand that IBD is a serious, life-threatening condition, and many factors outside our control can trigger painful flare-ups. Other people's misconceptions about IBD just add to our stress as patients...so if stress is a known trigger, we need to address these misunderstandings! 

This is why it is important to raise awareness, have discussions, and help others recognize the impact that IBD has on us. 

Because we know invisible illnesses exist, so why do we keep doubting those who live with them?

Instead of playing doctor, maybe it is time we start listening.

(Image from iStock, credit: nadia_bormotova)

Navigating the "Why Me?" Season of Chronic illness

Yeabsira Taye Gurmu: Addis Ababa, Ethiopia

The "Why Me?" season of my journey with Inflammatory Bowel Disease (IBD) was one of the most challenging times in my life. The onset of symptoms—unrelenting abdominal pain, fatigue, and unpredictable bowel movements—left me feeling lost and overwhelmed. Each doctor's appointment felt like a new hurdle, as I faced uncertainty and often dismissed concerns. The emotional weight of confusion, fear, and frustration was heavy, making it difficult to envision a future where I could manage this condition. It was a time filled with questions but few answers, leaving me grappling with the reality of my health.

For new patients experiencing a similar phase, it’s essential to understand that these feelings are normal and part of the diagnostic journey. Expect to encounter a mix of emotions, from denial to anger, as you seek answers. It’s crucial to advocate for yourself and seek support, whether through online communities or professional help. Keeping track of symptoms and preparing questions for your healthcare provider can empower you during appointments, helping to clarify your condition. Remember, this stage is often a tumultuous path toward understanding, and it’s okay to feel vulnerable as you navigate it.

Transforming the "Why Me?" phase into a positive, lifelong attitude is possible. Embrace the challenges as opportunities for growth and self-discovery. Focus on education about your condition, which can demystify the condition and foster a sense of control. Surround yourself with supportive people who uplift you and understand your journey. By practicing self-care and maintaining a proactive mindset, you can turn this difficult chapter into a foundation for resilience and empowerment. Ultimately, this experience can lead to a fulfilling life with your chronic condition, marked by hope and a renewed sense of purpose.

Featured photo by Disha Sheta from Pexels.

Fighting, Grieving, and Enduring Entropy

By Zahraa Chorghay, Montréal

Trigger warning: mental health, death

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In a universe of entropy, living with a chronic illness has meant surrendering control and expectations of stability to give myself the gift of being more flexible and adaptable, and thus, more resilient. This transition isn’t an easy process, particularly for someone like me: an elder daughter of the diaspora fed on a steady diet of validation for professional accomplishments. Unlearning harmful ableist notions of success and well-being has been a challenging journey spanning years — and one that is and will be ongoing throughout my lifespan.

Crafting this last official piece of content as a fellow for this Young Adults Network for people with IBD (inflammatory bowel disease), I am moved to reflect on my transitions, particularly over this past year as a CCYAN Fellow. When I applied to the CCYAN fellowship a little over a year ago, I knew what I was looking for: a space to connect with others like me, and a platform to advocate about IBD. My tenure with CCYAN certainly fulfilled both of the needs, and more. I engaged with IBD research, attended meetings in the broader health policy and scientific community, facilitated peer support meetings, and became part of a community I hope to continue with for many more years. But the joy and learning from being in the CCYAN community was just a fraction of life. 

In reality, 2024 was a year of great turmoil. Geopolitically, yes, and also, personally.

The beginning of my year was marked with illness. By February, after an incredibly fun winter chalet weekend with some of my closest friends, I found myself in the emergency room of a hospital. Diagnosis: severe anemia. Solution: a blood transfusion. (You can read more about that here.)

The following week, I was slated to fly to California for an interview, so I did. That went well enough that a couple of months later, I left my stable corporate job and packed my bags for a permanent move across the continent. After my PhD, I had taken a protracted hiatus from my passion, neuroscience, so I was thrilled to be returning as a postdoctoral associate (“postdoc”) in a brand new lab in the Golden state. 

The move was tough. Moving to a new country means starting from scratch. Logistically, I had to get all my documents in order, deal with banks, find housing with no credit history, and navigate an entirely different healthcare system. Socially, I had to make friends and deal with the profound sense of missing everyone back home. (You can read more about that here.) But I was there to advance my career, and I obstinately held on to that goal. I had to learn many new things, and under a completely different management style than I had previously encountered. So I dove into the scientific literature, asked for help from my supervisor and colleagues, and practiced my techniques. Everytime something went wrong, I came back to the lab, working even longer and harder to make sure I could improve. I would stay late often enough that one of my favourite colleagues became the night-shift janitorial staff member. (She would often pass by me and say, “Keep working hard, girl!”)

Despite my resolve, I struggled. I wasn’t ready to give up, but the combination of suboptimal conditions affected me deeply. I’d return to my sparsely-furnished apartment at the end of each day too exhausted to do anything but eat a quick dinner and lie down, while having that sinking feeling that I had nonetheless missed the mark at work. I was living in a beautiful city with perfect weather and the vast ocean in the peak of summer, but I scarcely had the energy or capacity to enjoy it. My appetite, sleep, and energy levels were all affected, and I knew my stress could cascade into a Crohn’s flare before I knew it. I was taking everything I had unlearned about ableism and notions of success, and learned about IBD, work-life balance, and myself over the last decade, and tossing it out the window.

And as a result, I was drowning. The more I struggled to keep swimming, the more salty water I was intaking. The only times I came up for air were when visitors from home flew to California to spend time with me, showing me glimpses of the person I once was and could be.

Then, I received a text from my father. Inna lillahi wa inna ilayhi raji'un (To God we belong and to Him we return) — a prayer for the deceased. Unable to believe the words that followed, I called him immediately. 

Baji Ammi had passed away.

In English, Baji Ammi translates to Sister Mother, and that is perhaps a better description than the vague, distant, and altogether inadequate word, “aunt,” that the language would otherwise designate. Her death was sudden, as she had been an otherwise active woman in her early sixties. Her death was devastating, as she was the kind of person who gave unconditional love to whomever was so fortunate as to be in her orbit. 

Everything blurred together in the hours and days after this news. Grief became giant convection currents rippling through the mantle, forever shifting the tectonic plates of my life: I was forced to face myself. Ultimately, I quit my postdoc and returned home to Canada. Now, I am trying to figure out what comes next, while dealing with logistics and processing grief.

A year ago, I couldn’t have imagined that I would move across the continent only to move back, or that I’d pursue a postdoc only to leave it within a few months, or that I would never see my kind, beautiful, witty Baji Ammi ever again. And despite the overwhelming grief of dreams and of life extinguishing, I have also been incredibly fortunate (aA) to have unwavering love and support to move through this grief. I’m glad I also had CCYAN throughout this tumultuous year, getting and giving support to our incredible community. 

In a universe of entropy, of constant turmoil and loss, I suppose life endures.

The Never-Ending Cycle of IBD

By Selan Lee from the United Kingdom

Many things in life are cyclical: the seasons, fashion trends, and the moon’s phases. The one thing we all hope isn’t cyclical is illness. Who wants a never-ending cycle of health and disease? But for those who are chronically ill, it is an unfortunate truth that I previously thought I had accepted - until three months ago.

Three months ago, the symptoms that had started it all returned: frequent diarrhoea, bloating, gas and nausea. In retrospect, stress seems to be a determining factor in my cycle of Crohn’s. My first flare was during the final months of my A-levels - a set of exams that would determine my future according to my 18-year-old self. My second and current flare began two weeks before my graduation and coincided with the final interview for a job I desperately wanted to pass. Unfortunately, the consequences of the stress-inducing circumstances were also cyclical. I severely underperformed in my exams and panic-attacked my way to a re-sit the following year. I didn’t pass the interview and was faced with ending university without a stable job to move on to. Healthwise, like the first flare, I was admitted to the hospital soon after graduation.

Maybe because I had experienced five years of relative good health since my diagnosis, I thought I had accepted the chronic nature of Crohn’s. Despite becoming resistant to a few biologics - I went to university, sourced and worked in a consultancy for my placement year, attended my first concert, joined a panel for young adults with IBD and was able to socialise with friends and family without much concern. My brief period of normalcy had blinded me to the fact I hadn’t really accepted the cyclical nature of my condition, and to be honest, no one with IBD or a chronic illness does.

I remember when someone asked during a panel how people with IBD cope, and the members and I all said hope helped us to cope. Naively, I equated coping with accepting. That’s far from the truth. I can cope with my biologic no longer working as there will be another one. I can cope with waiting for the night shift doctor to prescribe paracetamol for my abdominal pain. I can cope with forgoing foods and situations that will worsen my IBD. But I can’t accept that this will happen again. Understanding and coping are one thing, and acceptance is another.

How can I accept that I will progress through life feeling alone because of my IBD? Like I am sitting on an ice floe floating past all of life’s possibilities. Maybe it is pessimism talking, but living with IBD can be akin to the myth of Sisyphus. Many of us will spend our lives pushing the boulder of IBD to remission - with some, like me, falling back to flare. But maybe, in the words of Albert Camus, I will achieve happiness in this absurd repetition and be satisfied regardless of the outcome. Then again, Captain Raymond Holt says, “Any French philosophy post-Rousseau is essentially a magazine.” [1] - so I will wallow in my pessimism for a while. I might be able to see the brighter perspective of Camus and Terry Jeffords once my new meds prove to be successful.

References

1. “Brooklyn Nine-Nine” Trying (TV Episode 2020) - IMDB. (n.d.). IMDb. https://www.imdb.com/title/tt10322288/characters/nm0187719

Featured photo by Frank Cone from Pexels.

Stressing about Stress: When Living with IBD

By Maria Rouse from NC, USA

“I’m so stressed.” As a young adult just starting graduate school and recently graduated from undergrad, this common refrain often echoes through hallways, classrooms, and study spaces as a steady hum. Just saying it can create some relief for the stressed person, since putting out into the world that you are stressed is still often stigmatized in academic and workspaces that prioritize competition and elitism. But for a lot of people, especially neurotypical and non-disabled folks, the thinking about stress or the health impacts of it largely ends there for all intents and purposes. 

However, for chronically ill people and particularly those with autoimmune diseases like inflammatory bowel disease, thinking about stress quickly compounds on itself and becomes meta: it is so easy to become stressed about your stress knowing how negatively it will impact your health. And it goes without saying that this extra stress is not exactly great for keeping Crohn’s or ulcerative colitis flares under control either.  

The primary mechanism through which this works physiologically is that when people with IBD are stressed, perhaps due to a traumatic life event or school/work burnout, our brains release a stress hormone called corticotropin-releasing hormone (CRH). CRH sends a signal to our adrenal glands to release another group of hormones called glucocorticoids. Glucocorticoids, in turn, then send signals (e.g., colony-stimulating factor 1) that direct immune cells to the intestine that increases the production of tumor necrosis factor (TNF) that causes increased intestinal inflammation. And then boom, before you know it and can manage it, you are in the midst of a flare.

I have often found myself jealous of the relative simplicity of stress for people who do not soon become physically ill from its effects on their body. While chronic and/or severe stress generally has negative consequences for peoples’ health down the road (e.g., increased risk of cardiovascular disease, development of chronic conditions such as diabetes), your average person generally does not regularly grapple with these long-term health outcomes on a daily basis until they become acutely present potentially years down the line. There is a privilege in being able to be stressed without being stressed about being stressed. On the other hand, with IBD, folks are more likely to have to grapple with a stressful flare on top of the current stressful situation they are facing. Simply put, when it rains, it pours. 

A lot of the well-intentioned but poorly thought-out wellness initiatives now prevalent in workplaces and academic settings will tell you to take deep breaths or practice self-care (what that really means, I still am not sure) to help manage your stress. Anyone with an autoimmune disorder or chronic illness knows, however, that these stress management techniques do not remotely even cover our needs. Stress prevention often needs to be much more comprehensive and planned out in terms of prioritizing activities by the number of spoons (amount of energy) you have that day, consistently getting adequate sleep every night, giving oneself grace and flexibility for not being super productive because of fatigue or a random resurgence of symptoms. It involves taking extra care to avoid chronic condition flares, to the degree we have control over them (i.e., stress levels), early and often. 

There is nothing we can fundamentally do to change the fact that having a chronic illness or disability often comes with negative health impacts from stress, which is an inevitable part of life. What we can support changing, however, is the status quo around stress management from something discussed as part of wellness initiatives aimed simply at placating students, employees, and community members seeking greater work-life balance, to an approach of stress prevention. By involving more preventive and intentional techniques (i.e., managing energy levels proactively, intentionally planning ones diet to avoid inflammatory foods), stress prevention can benefit not only the chronically ill and disabled, but also the broader population; as chronically ill and disabled people, we can change the landscape of stress into something that is more intentionally and thoroughly broached in our communities, and by doing so, work to alleviate the stress of being stressed. What is beneficial for those who need accommodations is also beneficial for all.

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Sources

1.  https://www.scientificamerican.com/article/see-how-stress-affects-inflammatory-bowel-disease/

   
   2.  https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987#:~:text=Common%20effects%20of%20stress,%2C%20stroke%2C%20obesity%20and%20diabetes.

Featured photo by Pedro Figueras from Pexels.

Why Finding Your People Matters

By Maria Rouse, N.C., USA

It took me nearly 15 years to begin finding community as someone with inflammatory bowel disease. It was a very lonely 15 years. 

I try not to be so hard on myself, since I was first diagnosed with IBD when I was 10. There is not much in the way of accessible peer support for youth with IBD, especially at that young of an age. It was not an option I ever realized could be possible through my health system, and social media as a platform for peer support was just beginning at that time.  

My inability to find community led to a false perception of singular failure. I was the only person my age that I knew with IBD, and consequently internalized ableism spread malignantly within my mind and began marring my conception of myself. 

With the stigma associated with IBD, it is also not something you typically share about yourself with other kids on the playground, or even when you’re getting to know people during orientation at college. I have met several friends that I only much later learned had IBD. 

Ableism is a key motivating force in keeping us silent from sharing our stories and lived experience with others. Ableism is part and parcel of patriarchy, colonialism, racism, sexism, or most of the negative isms that still permeate society. It encourages us to remain alone in our journeys as chronically ill people. 

In a system that often tries to force us to act individualistically and hide our unique qualities for the sake of its imposed and exalted definition of success, building disability community is a light in the darkness. It is in itself an act of resistance and radical vulnerability in a society aims to police abnormality and difference. This can make us believe that our challenges and needs are uniquely too much, when nothing could be further from the truth.  Community reminds us of our humanity as chronically ill people. 

In any setting, making new connections and friends can be terrifying, particularly if you have felt so alone and different all your life as a person with a chronic illness. It can feel especially vulnerable to join a support group discussing such sensitive topics as disordered eating and body image with a whole new groups of people. But forming community through a group such as CCYAN is so worth any initial awkwardness or difficult topics. 

The reality is that peer support is not just about you, although it often is cathartic and restorative to know we are not alone and to learn how others managed the difficulties that IBD created in their lives. Peer support is also an act of advocacy, allowing disabled and/or chronically people to take up space when so often our voices are not heard. Building community is an act of advocacy for yourself and also others who may still face barriers in sharing their experiences. 

In short, don’t wait years to engage with peers who have IBD. Make time for that peer support group meeting, attend that advocacy event, or connect with peers over Instagram. There are typically more obstacles for chronically ill people to engage with peers, whether that is being immunocompromised or having limited spoons or energy. However, engaging with other IBDers in whatever format is accessible to you is well worth the effort. Life is truly all about connections, and the ones you make with those who have very similar experiences as you can be some of the strongest bonds you will experience. You never know what can come out of it, and how the world could be changed for the better. 

Featured photo by Darrel Und from Pexels.

Humour - The Best Defense Against the Realities of Chronic Illness

By Selan Lee from the United Kingdom

In the words of Chandler Bing, “I started using humour as a defence mechanism” - though for me, it is not a consequence of my parents splitting up (just to reassure you, they’re still happily married), but rather a result of my chronic illness.

While there have been difficult moments in my life before and after my Crohn’s diagnosis, I’ve noticed that one of the most significant ways I have coped and helped my loved ones cope with the negativity IBD often brings - is with humour. More often than not, I’m somehow making a joke about poo, the absurdity of hospital scheduling or the horrific taste of Fortisip nutrition shakes. But I had also used humour to make light of bleak health outcomes - for example, when the second of my biologics stopped working, or surgeons tried to push for a stoma just before exams. 

As a Psychology undergraduate, I know this technique is a classic example of an emotion-focused coping mechanism in which I utilise humour to manage the stressful emotions that IBD bring. However, I know as a thinking and feeling human being, if I don’t use humour, it is very easy to fall into the grips of the stress and negativity of chronic illness[1] - and similarly for those caring for us[2]. So, I would like to share some moments where I’ve found humour in my experience with chronic illness, and I hope you will find some, too, in your chronic illness journey.

#1 When you're using the same medication as a lady in her 80s -

Any biologic prescribed to someone with IBD has a high probability of also being prescribed to an elderly individual with arthritis. Given that IBD and arthritis are both inflammatory diseases, just attacking different body parts, it makes sense a twenty-something with Crohn’s will be given the same as arthritic Ethel in her 80s. Thus, I find it infinitely hilarious when I walk into the medical day unit and watch as two or three seniors stare at me in curiosity. I’ve seen many an old bitty’s eyes go wide when they hear that I was born in the year 2000. Confusion when the scales reveal I’m on the heavier side and not outwardly weak or frail. But the best bit of this situation, which still makes me chuckle to this day, is what rarely happens at the end of an infusion. 

Once an infusion is complete, the IV is removed, and a cotton ball is placed on the site to prevent bleeding. Usually, slight pressure and a little bit of time are enough for a clot to be formed and any chance of bleeding out in a medical bay to be reduced to virtually zero. However, on one rare occasion, not enough was applied, and as I got up to gather my things - I felt a warm sensation over the back of my hand. Looking down, I noticed a few drops of blood on the back of my phone case and some staining on the denim of my jeans. Turning to look at my hand, I realised the warm sensation was not my hand warming up after the cold IV stream - but blood oozing out from the infusion site. My hand looked like a Halloween decoration. Perhaps as a result of my lack of aversion to blood or my fatigue, I quietly and calmly asked the nurse for help. What I didn’t realise until I stood there waiting as the nurses scrambled to get the gauze or alcohol wipes was that arthritic Ethel had witnessed a young whippersnapper with a bleeding hand look at said bleeding hand with no fear and simply say, “Excuse me” as I pointed with my non-bleeding hand to the bloodbath - like a complete psychopath. I saw a look of horror and fear of myself, not the blood, in her eyes, and it still makes me laugh to know that she probably told everyone she knew about the psychopathic twenty-something she met in the medical day unit.

#2 A little too familiar with the Bristol Stool Scale -

It is a right of passage to be introduced to the Bristol Stool Scale following a diagnosis of IBD, with 1 being akin to rabbit droppings and 7 to swamp water. My mum quickly started using numbers to check my condition after this introduction. In the early days of a flare, I would be asked, “Number 4, 5 or 6?” as soon as I left the bathroom. However, it also became a way for us to assess unappetising food: a dodgy-looking shepherd’s pie, a 5. A little too watery chocolate lava cake, a 7. It didn’t take too long for us to realise that this scale may not be as appetising to overhear at the dinner table as it was funny for us to quip.

#3 The best way to enjoy a Pepsi is without the fizz -

You develop a strange relationship with food when you have IBD, and for me, during a flare or in the few weeks leading to my infusions, I find fizzy drinks hard on the gut. The carbon dioxide seems to exacerbate the pain and discomfort. But that doesn’t mean the cravings for certain beverages disappear. 

On one such occasion during my flare, I craved a Pepsi - but didn’t want the fizziness it came with. Thus, I hatched a plan. As my parents were preparing to leave for Costco while I convalesced at home, I told them it would be a good idea to get some food, preferably a hot dog, to enjoy themselves and our dog. They returned with hot dogs and, more importantly, cups filled with Pepsi. While they enjoyed their food, I kept an eye on my Dad’s Pepsi. I knew he would have drunk a cup at the store, and this was his refill. I also knew that he never fully finished his second cup of Pepsi. Therefore, I waited for the moment he inevitably left the partially-full cup on the table. Once he left the table, I took the cup, checked the contents and once satisfied - I hid the cup in the fridge behind some condiments. The next day, I gleefully took out the flat Pepsi and downed the drink without the slightest hint of effervescence. I have yet to have a similarly satisfying food or drink experience.

References

1. Naylor, Chris & Parsonage, Michael & McDaid, David & Knapp, Martin & Fossey, Matt & A, Galea. (2012). Long-Term Conditions and Mental Health: The Cost of Co-Morbidities. https://assets.kingsfund.org.uk/f/256914/x/a7a77f9f6b/long_term_conditions_and_mental_health_february_2012.pdf 

2. Lim, Jw., Zebrack, B. Caring for family members with chronic physical illness: A critical review of caregiver literature. Health Qual Life Outcomes 2, 50 (2004). https://doi.org/10.1186/1477-7525-2-50

Featured photo by Fernanda Lima from Pexels