NEWS
Digestive Disease Week: Role of Diet, Lifestyle, and Environment in IBD
I thoroughly enjoyed attending Digestive Disease Week’s session on Role of Diet, Lifestyle, and Environment in Inflammatory Bowel Disease. Let's start from the beginning and understand why studies surrounding diet, lifestyle, and environment are so important in understanding IBD.
IBD affects nearly 3 million Americans and over 200,000 Canadians. IBD is an immune-mediated disease that occurs due to certain, unknown environmental exposures in those with underlying genetic predispositions. Research on environmental exposures is needed to discover what environmental factors may contribute to an individual receiving an IBD diagnosis. This research will not only create an overall improved understanding of IBD, but also contribute to reducing the onset of IBD as well as cures for IBD.
Ultra-Processed Foods and Risk of Crohn’s Disease and Ulcerative Colitis
Two speakers in this session I found extremely interesting, the first being Dr. Chun-Han Lo. Dr. Lo reviewed his study on ultra-processed foods and risk of Crohn’s Disease and ulcerative colitis. The Western diet is thought to increase the risk of IBD through changes in the gut microbiome which can trigger immune function when compared to the Mediterranean diet.
Foods were separated into four categories from least to most processed:
Unprocessed
Processed culinary ingredients
Processed foods
Ultra-processed food products
Dr Lo explains that right now, it is widely known that higher consumption of ultra processed food products is associated with all-cause mortality, cardiovascular disease, metabolic syndrome, obesity, and cancer. Agents and thickeners, that are often added to ultra-processed food products, were also examined. The study aimed to examine the associations between ultra-processed food products and the risk of incident of Crohn’s Disease and ulcerative colitis.
The results indicated that higher consumption of ultra processed food products, specifically ultra processed grain foods and fat and sauces, was associated with an increased risk of Crohn’s Disease. Additionally, emulsifiers and thickener containing foods increased the risk of Crohn’s Disease. No subgroups had an association with risk of ulcerative colitis. This differentiates the impact food may have on Crohn’s Disease versus ulcerative colitis, furthering complexifying IBD. Further studies are needed on the effect of ultra processed food products in patients with established IBD may be warranted.
Although you may not be surprised by the results, studies like these are so important to allow room for more niche research and continue to allow researchers and doctors to understand the WHY behind IBD. As a Crohn’s Disease patient with many food intolerances, I am excited to see research surrounding diet and quality of food. There is little research backing the quality of food, and many suggest following a specific diet such as low FOD-map, gluten free, dairy free, among many others. It’s extremely exciting to see additional research surrounding foods, specifically processed versus unprocessed foods. My hopes are that this study can contribute to encouraging people to eat better quality foods and, in turn, reduce Crohn’s Disease diagnoses. Further, my mind jumps to future research covering whether reducing ultra processed food products after an IBD diagnosis could help treatment and management of disease.
Development of a Composite Environmental Score to Predict Age of Onset and Outcomes in IBD
Dr. Nidah Shabbir Khakoo spoke on the development of a composite environmental score to predict age of onset and outcomes in IBD. Specifically, Dr. Khakoo focuses on the fact that many environmental exposures associated with IBD are increasingly seen with Westernization. The study aimed to explore the relationship between individual environmental exposures and the age of onset of IBD. This study is extremely important in order to come to the understanding of what can cause a person to be diagnosed with IBD earlier in life, rather than later.
As someone with IBD, I have frequently wondered what environmental exposures in my life have caused my IBD to have an earlier onset? Why did I receive my IBD diagnosis in my early twenties compared to others that are diagnosed in their fifties? These studies are crucial to understand potential causes for earlier disease onset and overall understanding of IBD.
This study was administered on adult patients previously diagnosed with IBD. An environmental survey that queried age-dependent and lifetime exposures to various environmental factors were given among the participants to identify the environmental exposures each subject has had throughout their lifetime while looking at the age of their diagnosis. It is important to note that this study had a large number of hispanics, an underrepresented group in IBD research. The study looked at the age of disease onset, specifically comparing hispanics vs non-hispanics and Crohn’s disease vs ulcerative colitis patients.
Earlier Ulcerative Colitis Onset:
US Born
C-section Delivery
Fewer bathrooms
Decreased housing density
Ex-smokers
No farm contact
Earlier Crohn’s Disease Onset:
US Born
Water source - plastics
Fewer bathrooms
Decreased housing density
Smokers
Dr. Khakoo shares that the environmental score presented explains a greater amount of the variation in the age of UC onset than Crohn’s Disease onset. Additionally, weighted and not-weighted scores did not predict disease location, presence of extraintestinal manifestations, likelihood of surgery or hospitalization, or number of biologics needed. Certain environmental exposures, such as bottle feeding, showed opposing effects in ethnic groups with IBD, leading to assume that cultural and socioeconomic factors may influence disease onset.
These results give a baseline that other research needs to build off of. It is becoming increasingly evident that ethnicity differentiates environmental factors contributing to IBD and more research is needed to understand these differences. I’m looking forward to hearing of future studies regarding this subject and am hopeful more nuances regarding environmental exposures and the timing of IBD onset will be discovered.
It was great to hear from multiple experts about diet and environmental factors relating to IBD. I think that the data so far shows that there is a lot of work to do to understand what environmental factors contribute to IBD. I am looking forward to seeing future studies dive more in-depth to discover the causes of IBD. I am incredibly grateful to have heard from Dr. Chun-Han Lo and Dr. Nidah Shabbir Khakoo, and am confident these studies will have a large influence on future research on Inflammatory Bowel Disease.
World IBD Day: What's Something You Wish People Knew About Living With IBD As a Young Adult?
"What’s something you wish people knew about living with IBD as a young adult?"
Savannah:
As a young adult with IBD, I wish others knew how hard it is to balance nurturing our health while also taking part in classic twenty something year old activities. Not only do we have to focus on our health everyday but we are also navigating the world, discovering who we are and what we want to be. IBD doesn’t define us and our goals, but it sure does impact us on a daily basis and creates significant barriers.
Andre:
Having IBD as a young adult robs you of fully experiencing your youth. Most of us are diagnosed between the ages of 18-26. These are formative years that will influence the rest of our lives, but we are not afforded the opportunity to experience the same highs as our healthy peers. This does produce a high level of perseverance, but the isolation and FOMO will always be present.
David Gardinier:
I wish people knew how much energy is at a premium for us. I feel like with IBD, I have a set amount of energy each day. If I use all that energy up during the day in my internship, I don't have any left for the rest of the day. This is especially true when I go out and play ultimate frisbee. I wish everyone else knew that I am not just being lazy halfway through the game, but that I actually get tired twice as fast as everyone else even though I am doing the same amount of work. It can be frustrating knowing that my disease will hold me back from performing the same as other people the same age I am. The more people that know how much fatigue impacts young adults with IBD, the more empathy will exist surrounding this disease in our population.
Jennifer:
Tackling a chronic illness as a young adult is overwhelming, to say the least. To fight a disease that can neve be cured, while simultaneously trying to figure out who you are and what you want to do with your life -- well, that’s hard enough as it is. I hope people can be compassionate towards young adults with IBD, realizing that we are battling a fight they may not always see.
Sara:
Many people have the wrong conception about young adults who live with IBD. They think having IBD is karma, especially for those from Asian countries because their life is filled immensely with strong cultural and religious beliefs. This thought that IBD is caused by Karma is unacceptable and should not be entertained. Living with IBD is not karma; in fact IBD patients are warriors. Young adults with IBD are brave and super strong people. In today's world, they face so many challenges in their daily life, such as family, relationships, finances, and social pressure. But still they never give up in overcoming those challenges and prove their life is beautiful.
Nathalie:
I wish people knew that living with IBD as a young adult does not make me too weak to handle things. Sometimes people keep things from me to protect me or because they think I’m going through too much to hear about someone else’s life. I believe these intentions are honestly kind, but it’s okay to ask for my support. My normal is different from a lot of other people’s normal and that's okay. I don’t feel like I’m going through too much and I don’t feel weak, my IBD isn’t tragic, it is just a part of my life.
Kumudini:
I just wish that people knew it's normal for any human being to use washroom the number of times one wishes. Moreover, nobody is voluntarily willing or would like to time pass there. Its absolutely normal to miss appointments and give us the space of silence. We did not invite this disease by unhealthy eating habits. We never would like to refuse any yummy food, it's just that we love our intestine so much and we do not want to dump it with something which doesn't suit it.
Vasiliki:
Getting diagnosed with a chronic illness such as IBD is always a difficult condition. It is even more difficult when you receive this diagnosis at a young age. You suddenly find yourself dealing with issues that have to do with your health; you try to find ways to improve your health and balance the daily life of a young person with the life of a chronic patient. This is not always a straight line, sometimes you encounter obstacles and difficulties, but with will and effort you overcome them and move forward. The most important thing for me in this whole journey is to find allies who can support you and help you effectively. Αnd of course in no case do not give up your dreams. Τhe difficult days will come and go, but life is in front of you even if sometimes it is cloudy. Remember that you are more than your illness!
Disability Makes Me Feel Colorful
When I was first diagnosed with Crohn’s disease, I remember hating myself. For so long, I was so angry at the world. I was angry because I couldn’t run anymore. I was angry because I was in pain. I was angry because I felt like I wasn’t capable of anything.
The stigma of disability is often composed of beliefs that people with disabilities are too sick to do anything, are not capable, and weak.
Years later I realized the only reason I hated myself and hated my disability was because society made me believe that having a disability was the worst thing that could have ever happened to me.
People would frequently tell me things like I should reconsider what I wanted to do with my life because of how my illness would impact me. I have been told that it was surprising I could even do what I have done in my life. I have been told that I would be in pain forever.
I have had doctors not believe in me. I have been blamed for my illness. I have been shamed for my weight, for not eating enough, for not trying hard enough, for being too tired, for eating too much “fast food” and an endless stream of hateful and hurtful words.
Sometimes even members of my own family would shame me and suggest I caused my own illness. I think that hurt the most.
But they could not have been any more wrong.
Living with a disability allowed me to see my black and white world in color for the very first time.
My disability gave me inspiration for my future career. It allowed me to realize what my true passions and dreams were. It allowed me to appreciate the smallest, tiniest things that no non-disabled person would ever be able to notice. It opened up the door for new hobbies. It empowered me to focus on my mental health. More than anything, it gave me a second chance at life.
I live for myself now.
I started painting which is weird because I used to only be able to draw little doodles on the bottom of my notebooks.
I do yoga when before I would over-exercise and tire out my body.
I found out about Trader Joe’s vegan chocolate chip oatmeal cookies with coconut (only after the very serious hunt to find snacks that were IBD friendly for me).
The air tastes better. Songs are not even songs anymore; they are seven different melodies and sounds happening at the same time and I can appreciate every bit of it. Every time I take a step without pain, it makes me feel like I am walking on clouds. The sun feels warmer.
I feel colorful.
Personally, my disability was the best thing that could have ever happened to me. It is difficult. It is painful. It is exhausting.
But it does not make me weaker than anybody else, less capable than anybody else, and I do the same things anybody else does, and I do it while I’m sick too.
This article is sponsored by Lyfebulb.
Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.
Tribute to Khichdi - A South Asian IBD Comfort Food
Note: While Khichdi is regarded by many as a nutritious, can-do-no-harm food, and has existed in ancient ayurvedic literature (ancient Indian medicinal journals) as a food that cleanses and heals the digestive system, the food is not a one-stop solution to IBD, and there is always the chance that it does not suit everyone’s bodies. My views are not medically backed, as I am not a nutritionist, dietician or doctor; I talk about my journey of IBD with a food that has become dear to my heart (and tract).
Khichdi has a soft spot in the hearts of many South Asian people, not limited to just the IBD folks. It’s appeal to such a diverse diaspora over a varied amount of time is amazing but not surprising, due to its flexibility in becoming anything it’s fans desire. In India, a country with many inequalities, khichdi is a dish that can both dress up fancily as a wholesome comfort food for some, and strip down to a humble meal that provides a day of nutrition for others, becoming a unique thread that ties the polar opposite lifestyles of the rich and poor of India. It simultaneously also acts as a thread connecting the ill and healthy, with Ayurveda texts prescribing it as a staple meal as part of a larger lifestyle free from illness and pain, but is also a very popular meal outside of Ayurveda. It has its place in popular literature1, journals of travellers2, was chosen to be the main showcased food for World Food India 20173, has a dedicated restaurant to capture its varieties4, and is used widely as holy offerings in Hindu temples5. The meal has countless variations in all the states across the country, retaining its quality of being a trusty comfort food at its core, a pretty big feat considering all the various ways the states of India differ so widely.
When I first started showing symptoms of Ulcerative Colitis, among my many concerns, one big one was how my diet was going to be constricted to only khichdi. For a lot of the South Asian community, this restriction to their diet as they were diagnosed/even now when they show symptoms, is very relatable. I had observed a few years of my brother’s diet with UC before I started showing symptoms myself, and I cringed at how disciplined he was expected to be in eating bland khichdi, oftentimes for multiple meals, for days, weeks, even months at a time. My first few years of having UC, I followed the same path for the first couple of years, following treatment only in the Ayurvedic realm, which required many bland bowls of the rice meal. It’s safe to say I was sick (not the IBD way) and tired of it. It wasn’t until I was out on my own, in rural India for the first time, that I realized my need and dependence on the food I had come to rely on so much after learning to listen to my body. During my first few weeks of being in a remote village managing my flare ups, I was uncomfortable on many levels, and yet my memories shine with gratitude for the few times I was able to successfully find and/or be invited for a warm and simple meal of khichdi. It had effectively found a place in my heart as the one and only food that I could rely on, even in the remotest of places.
Below are my recipes for a flare-up version a and normal version I like to enjoy as my go-to comfort food:
Plain Khichdi (Flare-Up Version)
Ingredients:
1 cup rice (any, preferably broken)
¾ cup lentils (yellow mung split)
7-8 cups water
1-2 Tbsp ghee (clarified butter)
½ tsp turmeric
Salt to taste
Steps:
Wash rice and lentils in a bowl, and add to a pot on a stove.
Add salt and turmeric and bring to a boil.
Cover and put in on a medium-high heat. It will take 15-20 minutes to cook. It’s best to keep stirring occasionally and checking to get a porridge-like consistency.
When cooked, pour into a bowl and add ghee on top. Enjoy!
Khichdi with Vegetables (Normal Version)
Prepare Khichdi same as above.
For the Vegetables:
Ingredients:
2 inches bottlegourd, peeled and diced
1 carrot, peeled and diced
1 green bell pepper, diced
1 tomato, medium sized, diced
1 onion, medium sized, diced
1-2 Tbsp ghee
¼ tsp garam masala
¼ tsp paprika
Salt to taste
Steps:
While khichdi cooks, heat up a frypan with ghee.
Add the onion. When the onion turns translucent, add the tomato.
Add salt so the tomato mushes up quicker.
Add the carrot and cover the pan. Keep stirring occasionally. If needed, add water to fasten the cooking.
When the carrot is soft, add the bottlegourd. Cover the pan and let it cook, checking from time to time.
After the bottlegourd is cooked as well, add the bell pepper.
Depending on how mushy you like you bell pepper, add your spices (garam masala and paprika) and remove from heat. Keep the pan covered for some time.
Plate on top of the bowl of khichdi. You can add more ghee on top as per your liking. Enjoy!
Khichdi is generally paired with plain yogurt in India, as well as pickles and papadum (crispy lentil chip).
1 https://www.moralstories.org/birbals-khichririce/
2 https://www.thebetterindia.com/119823/khichdi-history-brand-india-food/
3 https://seachef.com/khichdi-gets-ultimate-boost-to-be-promoted-as-brand-india-food/
4 https://khichditgf.com/
5 https://metrosaga.com/indian-temples-and-their-prasadams/
What is a Healthy Diet?
Back when I was in college, I had a professor who hated the word “healthy”. She argued that the word had no real definition. At first, I am not sure if I agreed with her. Surely it was safe to say that something like spinach was a healthy food, right? It has fiber, loads of vitamins and minerals, and is low in calories - perfect health food! As time went on, and I thought about it more and more, I discovered she was right. There really is no one definition for the word healthy, because it applies differently to each of us.
Every person has their own goals as far as their health. For a bodybuilder, gaining muscle might be considered healthy. For a sprinter, something healthy might improve their times on the track. For others, healthy is eating in a way that will help extend their life. You can see that it isn’t as simple as slapping the label “healthy” on a food and calling it a day.
One of my favorite examples is birthdays. It doesn’t take a nutrition expert to know that birthday cake doesn’t improve physical health, but what about mental health? The goal on birthdays has never been to help you sculpt that hot summer body, but rather to celebrate with friends and family. It is a time to feel joy that we have made it another year on this Earth. If taking the birthday cake away harms that goal, well then the only conclusion I come to is that birthday cake is health food. Don’t tell anybody at the hospital I work at I just wrote that.
What about for people with IBD? What does a “healthy” diet look like for us? Having an interest in nutrition as well as IBD, I wrestle with this question a lot. I know that for the general population, foods like broccoli and brussel sprouts have been shown to reduce cancer risk, among other benefits. Therefore, they would generally be considered “health food”. But for somebody in an IBD flare, you might be better off roasting a package of nails at 350 in the oven for dinner. All that roughage is just going to result in pain and irritation as it passes through the inflamed intestine. For an individual with IBD who is in a flare, broccoli and brussel sprouts might be the furthest thing from healthy food they can eat.
That is why I think it is so important that we all understand the temporary and individual nature of the word healthy. It is not set in stone, what is healthy for you to eat today might not be healthy for you tomorrow. You should never be ashamed because you are not eating what the average person would call a “healthy” diet with this disease. That isn’t to say that you shouldn’t pay attention to diet at all. Your definition of a healthy diet will depend on your goals, which will most likely be very different from the friends, family, and coworkers you interact with on a day to day basis. Don’t compare apples to oranges. Take the time to define your health goals, and then determine what foods will help you reach those goals. Find your healthy diet.
Preparing for your GI Appointment
When your health is on the line and you have unlimited questions about your IBD flare, the anticipation to speak to your Gastroenterologist can be overwhelming. My heightened anxiety before and during my GI appointments would cause my mind to go blank the minute I sat down with my doctor. Negative or serious news can cause forgetfulness and wandering thoughts after the appointment, leading to me questioning the advice I was given. Throw the current coronavirus pandemic into the mix and things become even more complicated. Here in Canada, majority of medical appointments are now conducted over the phone contributing to a loss of connection and personable service. Medical appointments can be emotional rollercoasters, especially when receiving potentially life changing news about your illness and treatment plan. Below are four tips that will allow you to be best prepared for your medical appointments and will help minimize the stress, emotions, and feelings of frustration that may accompany the crucial medical appointments with your IBD specialist.
Tip #1: Write down your questions
Writing down all the questions and concerns you have before your appointment will ensure you remember to bring these topics up. Create a note in your phone or notebook ahead of your appointment and write down any questions, concerns, or notable symptoms you are having that you’d like to discuss with your doctor. Organize these questions and concerns in categories to easily hit all the topics in a simple and efficient way. Some great category suggestions: symptoms, medications, surgery, diet, accommodations, or any that work for you! Make sure you pull out your notes during your appointment and refer to each one, checking them off as you go. This will result in leaving your appointment feeling satisfied that you shared all your concerns with your GI and feel confident in your treatment plan.
Tip #2: Bring a notebook with you
Waiting for a medical appointment and then forgetting what the specialist said is the absolute worst feeling. Bring a notebook with you and write down any important suggestions, advice, medications, or risks your specialist speaks about. Anxiety and nerves can be high during an appointment leading to forgetfulness. If you write down quick notes about the conversation, you will be able to more easily remember the conversation afterwards and feel a sense of peace with the appointment. Not only will you have a better understanding of your treatment plan but your doctor will respect and sense the seriousness you are taking to fight your Crohn’s Disease or Ulcerative Colitis flare.
Tip #3: Audio record the appointment
Audio recording the conversation provides a simple and easy way to playback the conversation when you forget or want a refresher of the treatment plan your doctor provided you. This way you can easily save all your recordings to look back on in the future. Remember to ask your doctor for permission before recording! You can easily record the conversation with a recording app on your phone.
Tip #4: Bring a friend or family member with you
Attending a doctor appointment alone can be nerve racking and anxiety-inducing. My biggest tip is to bring a parent, a close friend or family member with you and bring them up to date on the reasons for your appointment and the questions and concerns you have. Another great idea is to give them a copy of your questions and concerns so they can speak up and ask if you forget to bring something up. Additionally, it’s always great to have someone advocating for you and your symptoms if your doctor quickly dismisses a concern you have.
A big concern as a young adult attending a doctor appointment with a parent is that your doctor may speak directly to your parent rather than speaking directly to you. If this happens, remind your doctor that you have brought your parents with you only as support and you are responsible for your own health. Also, you can confide in your parents and remind them to ask the doctor to speak directly to you, the patient. If you find your guest is taking over the conversation, remind them that you’d like them there only as emotional support and stay quiet except when specifically needed. Outlining these expectations with your guest prior to the appointment will allow for a smoother and more successful appointment to take place.
Whether you are currently diagnosed, in a flare or just having a check-in with your GI, these tips will allow you to maintain control and get the most out of your in-person or virtual appointment. Remember, the healthcare professional is here to help YOU. Do not feel guilty for asking numerous questions, being in-depth, writing things down, and prolonging the appointment due to concerns.
Good luck!
Why Malaysians Don't Talk About Their IBD
Malaysia is a beautiful and a welcoming country in Southeast-Asia. We are known for our multi-ethnic and multi-religious population living together in harmony. However, sometimes it is harder to talk about chronic illnesses as the culture and the society refrains you from talkin about negative occurrences. Illnesses are considered negative, and therefore, people with illnesses are regarded cautiously to a certain extent and they are advised to not discuss or talk about it in public. Awareness of IBD is very low among Malaysians. Many do not even know of its existence, let alone understand it. IBD patients often do not discuss their illness with anyone due to fear of not getting social acceptance, fear of rejection, and fear of losing opportunities that they deserve.
The geographical position plays an important role in social acceptance. People living in urban areas have more access to information and they often see display of information in many places. But that is not the case for those living in rural areas where information is scarce and few and far between. When IBD patients do try to talk about their illness, oftentimes, these geographical differences make it harder. Although it is easier to discuss your health issues in public for urban people, they often will choose not to do it again if the reaction was not good. As illnesses are considered negative, talking about them only brings more fear and unwanted attention. The society will think that either the patient is trying to get fame out of it, or they are imprinting fear of something that is not common. This “hiding illness” attitude causes more misunderstanding and more likely causes the patients to develop low self-esteem associated with their IBD.
Malaysians do not talk about their IBD to others due to the fear of rejection. The IBD patients fear that their family, friends, or colleagues will distance themselves if they know about their illness. The patients’ family might feel uncomfortable in discussing or even acknowledging the illness as they tend not to talk about sickness generally. Talking to colleagues is simply averted for the same reasons too. The fear of social rejection is very strong among IBD patients as their very own body is against them and this trauma alone could lead IBD patients to not open-up to others.
Fear of losing opportunity is another reason for IBD patients for not discussing their health issue with anyone, especially to a potential employer. They fear that they might not be able to get a job because of their chronic illness. Potential employers will hesitate to employ a person with illness which may cause them to take leave at unexpected times.. Many Malaysians do not disclose their sickness because they are worried to lose the opportunity that they deserve, therefore, they are not willing to disclose their sickness with their future employers during job interviews.
IBD patients in Malaysia fear not getting acknowledged socially, rejections of loved ones and of lost opportunities. It causes them not to talk about their IBD very casually to anyone. It is a very real health issue that needs to be talked about. Support groups are the first step Malaysian IBD patients have taken to make this disease more known and to assist each other’s. More and more people, especially the younger generations, are getting this disease in Malaysia now compared to a decade ago. Therefore, an accepting society is needed. I hope more people are open to understanding and accepting our differences. We might not have the best health condition but we are real and we exist!
Invisibile Disabilities
When we hear the word disability, our mind goes to a wheelchair, mobility problems, deformities and everything else obvious.
But is disability always visible?
The answer is no. Disability is not always visible.
Society's prejudice and stereotypes about disability want the individual to show obvious signs of disability. Inadequate information, distorted perception and misinformation perpetuate these stereotypes. People with chronic diseases, such as some autoimmune diseases, but also other diseases, often have nothing in their appearance that openly displays their disability.However, people with these diseases experience a form of disability, vital functions of their body are affected and their lifestyle is shaped accordingly. The professional status of the individual and / or his socialization and integration into society can also be affected. They depend on expensive treatments, they need several hospitalizations, surgeries, etc.And as if that were not enough, they have to fight a battle as "invisible" in a society full of prejudices and stereotypes, a society that discriminates against their disability.
I do not think there is anyone who does not want to be healthy; everyday life is hard in a society that daily degrades your dignity. Almost every day you have to prove yourself, and explain again and again..because you have an invisible disability. And to be treated in the worst way, because you do not fit the mold they have as a given.
Is the state responsible for this situation? Of course state has a great responsibility.It is the state that has the obligation to educate and sensitize the citizens about the various forms of disability, to cultivate mutual respect. It is the state that has the obligation to ensure the conditions for the integration of people with disabilities in society, to give people with disabilities equal opportunities for education and work, insurance and care. And above all, the state is the one that, in the difficult economic and social conditions in which we live, has a DEBT to protect people with disabilities and to defend their rights.
People with disabilities do not ask for sadness and pity, they ask for equal treatment.
But let's start with something basic: Let us not judge others by their appearance. We never know what battle they are fighting and what is hidden behind their appearance and their smile.
Calling in Sick and IBD
Hustle culture - committing your life to your job and career - has become normalized and even expected in young adults. After graduating university, many find their self worth linked to their career, earning promotions, competing with coworkers, and impressing your boss. As a twenty something year old with Inflammatory Bowel Disease, the struggle to balance work with your health is never ending.
Those with a chronic illness understand not to take life for granted and that each day can be as unpredictable as the next, but we often forget this and get caught up in prioritizing a career over our own health and wellbeing. Calling in sick to work is inevitable, everyone has to do it at some point in their lives, whether it’s for a mental health day, the flu, or a flare-up. Yet, there are so many negative stigmas around missing work and around prioritizing your body.
The feelings of guilt that come with calling in sick to nurture your body, whether you see your body deteriorating, know a flare is coming, or if a flare comes out of the blue, can be overwhelming. The stigma associated with hustle culture and calling in sick can feel disheartening. I have always had a hard time taking a sick day, and I always felt like I was letting my boss and coworkers down and that I wasn’t worthy of employment. Intense feelings of frustration and annoyance invaded my mind when debating whether to call in sick and these intrusive thoughts caused my body more stressors on top of being physically ill. I often remind myself that prioritizing my body is my number one job. Without my health, I wouldn’t have a job and I wouldn’t be able to participate in all the amazing experiences life has to offer.
A helpful comparison to calling in sick is the safety instructions reviewed when boarding a flight, right before take off. The flight attendant always reviews the emergency instructions, stating that if the plane were to lose oxygen, you are always to put on your own oxygen mask before helping someone else. Putting yourself first will enable you to not only succeed at your job, but also to succeed in other aspects of life. If you were to ignore your body’s signals that you need rest, you will become more sick and risk the most important thing, your health.
You are not weak, undeserving, or less important than your colleagues and friends because you need to call in sick more often than the average person. You are strong, resilient, and brave. We battle a viciously unpredictable disease that many do not understand. Do not let your worth be measured by whether you call in sick. I challenge you to listen to your body and honour what your body is saying, you never know how far you will fly until you respect and love yourself and with that includes respecting your body’s limits.
Recently, I took two sick days at work due to a small flare up and my boss and coworkers were overly supportive. Although feelings of guilt surfaced when I was making this decision, the second I returned to work, everyone showed how much they cared about my wellbeing.
If you are experiencing toxicity in the workplace, contact the Human Resources department. If your company does not have a HR department, set up a meeting with your boss or manager. If you continue to be pressured to not take sick days, to put your job before your health, this may be time to look for another job and boss that cares about you and allows you to put your health first.
On this note, being able to call in sick has undeniable privilege. Many people across the world are unable to call in sick without suffering financially or being penalized at work. Openly having these hard conversations during the hiring process or with your HR department will contribute to breaking the stigma and providing accommodations for those that are chronically ill. It’s important to speak with your boss or HR representatives regarding sick leave, paid sick days, and working from home options. Speak up to your government representatives and express the need for a handful of mandatory paid sick days across your province or state.
The Power of Music
I still remember the first time I listened to the song Where’d You Go by Fort Minor. It was June of 2016, and I had just recently been diagnosed with Crohn’s disease and finished my last semester of high school. It had been a semester of overcoming pain and fatigue to drag the shell of my body across the high school finish line. With those less than stellar circumstances, I was overcome with emotion hearing the lyrics describe in words exactly how I was feeling:
She said "Some days I feel like sh**,
Some days I wanna quit, and just be normal for a bit,"
I cried then, and I still tear up occasionally listening to the song and thinking back on that period of my life. That is the power of music, the ability of the songwriter to share their feelings in a way that connects with another human. It grants the comfort of knowing that others have experienced the same things you are experiencing now. That can be powerful for those of us with IBD, because it can be so easy to feel isolated and alone in our struggles.
Today, I want to take you through some songs I feel reflect the IBD experience for me. I encourage you to listen through the links as you read.
One song I keep going back to is Times Like These by Eden Project. The first verse starts out with what a lot of us feel sometimes:
It's been a long, long time
We've come a long, long way
No, I can't see the finish line, scared half to death, but that's okay
It's been a long, long night
After a long, long day
My body's aching, but I know somehow, my feet will find a way
I don’t know about y’all, but I can think of at least a dozen times I felt like this with my IBD. It can be so hard to try to imagine the finish line when the reality of your disease forces you to acknowledge the present instead of looking toward the future. And that is scary. When day and night you are exhausted just putting in the bare minimum effort, you can forget to look at the big picture. I don’t even have to tell you how much I relate to the body aching line. But the great part about this song is that it doesn’t end there. Near the end, the artist sings:
These are the times we will hold
In the silence, when I've given all of me
And it's alright that it's over
And I found fight, like a soldier coming home
In the silence, but I have never felt so free
The future's so bright, this is our time
And I'll live it how I dream
It is beautiful how the artist not only changes the lyrics to reflect the hope, but if you listen, the entire mood of the song changes as well. The tempo speeds up, the instruments are cheery, and there is a joy in the tone of the singer. I know when I had flares in the past, it didn’t feel like a time in my life worth remembering. But I do look back on those times in my life now and see how they shaped my future. I see how I was supported and loved by family and friends, and how it gave me a feeling of gratitude for every new day on Earth. Some days you won’t be able to see the finish line, but eventually you’ll look to the future and it will be so bright.
Another song I feel encapsulates the IBD experience is Mountain at My Gates by Foals. It starts out with this verse:
I see a mountain at my gates
I see it more and more each day
What I give, it takes away
Whether I go or when I stay
Doesn’t that just sound like the IBD experience? We have this mountain of IBD in front of us, and sometimes it feels like it takes away everything from our lives. The beautiful thing about this song is it is about overcoming that mountain. The second to last verse goes like this:
Oh, when I come to climb
Show me the mountain so far behind
Yeah, it's farther away
Its shadow gets smaller day after day
Sometimes our disease can just feel impossible to overcome. But one day we will come to climb, and we will have realized we have conquered that mountain. We will look back, and see all that we have accomplished. Whether it is overcoming a flare, graduating college, or just taking a shower this morning, we all have mountains ahead of us that are made more difficult to climb by our disease. That just makes the view that much better once we reach the top.
Please leave a comment with any song you felt has been an integral part of your IBD journey, I would love to give it a listen.