"You Don't Look Disabled"

“ You don’t look disabled. 

“You don’t look disabled” but some days I couldn’t go to school because I couldn’t leave my bathroom.

“You don’t look disabled” but I have to go to the hospital every two months for the rest of my life. 

“You don’t look disabled” but I have tried seven different medications for the same disability within three years. 

“You don’t look disabled” but some days my joint pain was so bad I couldn’t even pick up a pencil. 

“You don’t look disabled” but every time I walk into a hospital I am comforted and terrified at the same time.

“You don’t look disabled” but I used to sleep only three hours every single day for weeks because my steroids made it impossible to sleep.

“You don’t look disabled” but some days I can feel my throat close up from suppressing my anxiety.

“You don’t look disabled” but I have sat on my bathroom floor feeling like I couldn’t breathe because the nausea from my medications was so overwhelming.

“You don’t look disabled” but I am. ”

I have never understood why people tell me I don’t look disabled or that I don’t look sick. What is disability supposed to look like? Disability is not singular. Disability does not look one way. Disability is diverse. 

I do not want to prove I am disabled to strangers or people I know.

Though the intention behind this phrase may be to compliment me, I never feel complimented. I feel small. I feel like a fraud. I feel like I am faking my disability in some way. I feel like I do not know my identity. 

It is time for people with invisible disabilities to stop being doubted for being disabled. It is time for everyone to change their perspective of what disability looks like. We must listen to others’ stories. We must stop being bystanders when people with disabilities are doubted. 

Disability is not a bad word. It is not offensive. We should not be afraid of it. 

I am disabled and I am proud. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

Friendship and IBD

“Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything.” – Muhammad Ali

I started with this beautiful friendship quote because I’m going to talk about Friendship in this article. Friendship is a very unique relationship. Friends are not related to us by blood, even though they won’t have any expectation in the relationship they are always with us to support, to help, and to find purpose and meaning in our life. For me, they’re one of my major pillars in my life. The emotional bond between my friends and I helped me to recover back my strength, especially during pre and post-surgery. In this article, I would like to share how my friends helped me to build back my strength during my early days of being diagnosed with Crohn’s.

My friends have been good listeners. Whenever I have problems, the first group of people that I look for are my friends, not even my family, because my friends are willing spend their time to listen to my problems and my feelings. They’re fully present when I start to talk. There are no distraction such as phones, people, or work, and they give their 100% focus to what I’m saying. I was in campus during the time I was officially diagnosed with Crohn’s. I was depressed, and they were the ones l looked for to talk to and to share of my health condition with. Once I uttered everything I wanted to say, they kept silent for a moment and then they started to give their suggestions. The point is, they listened and digested my problem before giving their best solution. I think this is the best part of friendship because they didn’t jump to conclusions. Instead, they listened to me first.

They cheer me up with great humor. My friends do understand laughter is one of best medicines to keep me healthy. My friends, unlike myself, are funny and their sense of humor always bring me happiness. In our conversations, there are always some funny jokes that make me laugh. Even when I’m in a bad mood, they are able to make me laugh and refresh my mood and cheer me up. In fact, friends with a good sense of humor can make our world feel good. Whenever I spend time with them, I never have a thought of pains, depression, or that I have Crohn’s.

Another great quality of my friends is that they care about my daily activities. This is an important quality that my friends show toward me that I really appreciate in them. Caring friends take a lot of dedication and love to keep the relationship always warm. My friends often call me to ensure I’m doing fine. They accompany me for my endoscopy appointment every year. They take extra caution on my food intake whenever we go out to eat. There are many more things that they do for me. And, most importantly, they also like to use positive words to keep encouraging me. They’re say encouraging words such as “you can do it Sara”, “you must be strong” to motivate me so that I can keep moving on in my life. Their words give me more confidence and strength whenever I need it. Their words lead my thoughts and emotions to positive ways.

Friends provides a place for us to share and to discuss our feelings. In fact, friends are the best emotional medicine for people like us to overcome from depression and lift us up and encourage us to take a leap of faith to change our life into something better.

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.

Overcoming Medical Trauma with IBD

I have anxiety. 

I am afraid to speak up, almost all the time.

I press my nails hard into my palms when I think about why I said “How are you?” too quietly. 

I bring this up because about one year ago, I had an allergic reaction to an infusion. I had been on this infusion for several months, almost a year at the time. At first, I stayed quiet about the symptoms I had been feeling for a couple of weeks leading up to it.

I think a part of me genuinely thought it was in my head. When people around you are constantly telling you your illness is your fault or that you look fine or that your symptoms are just your anxiety, you start to believe it. 

It started with red, blotchy spots all over my skin. Some days were worse than others and eventually, I went to see a dermatologist who prescribed me a topical medication and I didn’t think anything of it except for the occasional feeling of shame when the spots became more visible. 

At the infusion before my reaction, I remember just thirty minutes into it, I felt so sick. I could hear my heartbeat in my ears and everything felt slow. I remember trying to explain that I wasn’t feeling well and then downplayed it for just being tired because I’m used to doing that.

At my next appointment, the same thing happened. I started to cough and my lungs and throat felt itchy. I felt little ants all over me, starting at my feet all the way up to my chest. I stayed quiet still because I thought I was just making it up in my head until my nurse pointed out that I looked a little flushed. 

When I got up to go to the bathroom to check it out, with the IV machine trailing behind me, I stared at the mirror in absolute shock when I saw welts the size of quarters flooding my skin and hives spreading quickly across my chest and neck. My mother who was with me became panicked and called the nurse who immediately notified the doctor. 

I remember I started laughing hysterically because I was so afraid. The nurse quickly started Benadryl through my IV and I was just shaking because I felt so cold. The doctor was asking clarifying questions but they just sounded like echoes in my head. Eventually, the reaction subsided and I just layed there, stiff, with anxiety. 

What I didn’t know was that ever since that day, anytime I go to an infusion or take one of my medications I am so afraid of it happening again. I got lucky that my nurse noticed something was wrong before it was too late, but I can’t help but wonder if I had just spoken up earlier I could have avoided all of this in the first place.

But I want to stress that it is not your fault for not speaking up. Sometimes it can feel like anxiety is taking control over your life but every day you struggle with anxiety and still choose life, you are the one taking control of your life. 

I don’t feel guilty anymore for not speaking up then but now I understand that I deserve to speak up for myself now. I deserve to be heard. When it comes to your health, it is never just in your head. What I mean by that is whatever symptom you are feeling-- whether it be a physical manifestation of anxiety, racing thoughts, pain, discomfort-- those are all valid and not imaginative. 

The next time you feel too anxious to speak up, just remember that you deserve to be heard. 

This article is sponsored by Lyfebulb.

Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.

10 Things to Know If You're Recently Diagnosed with IBD

Newly diagnosed with IBD? I wish you knew these first.   

Growing up as a teenager, I was a perfectly healthy child. I ate regularly; I was active and a bright kid who never had any particular routine or lifestyle that I used to follow. But everything started turning upside down once I started seeing symptoms. An bigger tragedy was when I almost felt like the game had ended after being diagnosed. No! Not at all. The actual game starts only after the diagnosis. Our bodies are always changing with IBD. From one day to the next, we don’t know how we are going to feel or what is going to happen. So it is of the upmost importance to know yourself and your body first. Ignorance certainly isn’t bliss here. If you feel like IBD is ruling your life, it’s time to take back the control. Here are the 10 things which I would like to share with all those who are newly diagnosed with IBD:

1. Educate yourself: Knowledge is power. Understanding IBD leaves you better equipped and empowered to manage it. There are many patients out there without enough knowledge about their IBD. It’s our responsibility to know everything we can about our disease and also our bodies. Take the time to learn everything you can. Read and discuss as much as possible with your doctors. 

2. Track your symptoms and triggers: Learn about your own symptoms and triggers. Many doctors suggest maintaining a food diary so that your doctor may be able to use the data you gathered to help guide your treatment plan. We can understand our daily life and limit what happens to us by doing this. 

3. Never miss your regular follow ups: After reaching my first remission, I assumed I was completely cured and had stopped my regular check-ups and follow ups with my doctor. The penalty for being so ignorant came with a cost of having the next severe flare up within the next few months which completely drained me and pulled me back to square one. IBD is a disease which needs to be managed and if you feel symptom free, you are not cured, it’s just that your medicines are working and controlling your symptoms. So it is important to have regular consultations with your doctor and monitor the functioning of your systems. 

4. Make every appointment count: Be well prepared as to what you need to discuss with your doctor before hand as most of the appointments will be limited to 10-15 minutes and you tend to lose out on discussing important stuff. You can even jot down pointers on paper before entering the doctor's cabin. 

5. Don't be afraid to ask for more information: The time slot allotted for each appointment may be limited. That doesn't mean you need to limit your queries and clarifications. Make the best of that limited time. For instance, if you’re being treated with steroids, ask for detailed information about how this medication could influence how you feel, the side effects, mood swings, weight gain, and such.

6. Know your treatment: First, know what kind of treatment the doctor has put you on. Whether it is the traditional treatment or biologics or allopathy or any other alternative therapies. Understanding your treatment can help you know what is happening to your body and analyse your recovery rate to attain symptom free life by choosing the best that suits your body as what suits others may not you and vice versa.  

7. Emotional health is equally important as your physical health: There could be days when your entire body hurts and there is nothing you can do. There could even be days when you don’t even want to move because you are so exhausted. During those days it’s not easy to control your emotions as you tend to feel more low and helpless. But you can still fight back by choosing to feel “it's OK”. Don’t let your IBD control you.

8. Coping with Stress: Stress doesn’t cause IBD, but it can sometimes make symptoms worse. Stress relief is crucial if stress provokes your flare-ups. Learning how to cope with stress and anxiety isn’t always easy. But it’s really important for us to keep stress under control. Yoga, meditation and music could be a few tools that may be helpful in this. 

9. Reach out for help when needed: IBD can be an embarrassing disease. It’s normal to feel alone sometimes. At a young age, we are taught not to discuss what happens behind a bathroom door. This can leave those of us with IBD, feeling extremely isolated and even hopeless. This can impact our self-esteem and quality of life. It's utmost important to have some go to people who understand these challenges and support us in every step of our journey. 

10. Nutrition matters: Understand how your system works and choose what goes into it rightly. When the intestine is under attack, it has a hard time absorbing nutrients. Therefore it's important for us to be aware of what we eat. Follow a low residue diet to relieve abdominal pain and diarrhea. If you have strictures, it is especially important to avoid nuts, seeds, beans and kernels. 

These are few of the things which I feel we need to keep in mind and plan our lifestyle when newly diagnosed. Knowing these pointers at the initial stages makes our lives much easier.  

IBD, Mental Health, and Diet

Have you ever had a gut feeling before? Maybe you’ve had butterflies in your stomach when taking a risk, or felt something in the pit of your stomach when receiving bad news. Are these just idioms, or is there something else there? On my journey to become a registered dietitian, the connection between food and physical health is a common theme. Something we talk about much less is the connection between food and mental health. While Inflammatory Bowel Disease (IBD) is often thought of as a physical disease, the mental impact cannot be ignored. In my opinion, we don’t talk enough about the IBD and mental health connection, and we certainly don’t talk enough about how food can play a role in this aspect of our disease.

Mental Health and Gut Health

What does gut health have to do with mental health? Strap on your helmet, it's time for a crash course in the connection between gut health and the brain. The gut has over 500 million nerves, which serve as a two way communication system with the brain. If your gut isn’t happy, you better believe it is going to let its good friend the brain know about it. Our guts are also responsible for producing neurotransmitters, which help to regulate physical and mental functions of the body. One important neurotransmitter that regulates mood, serotonin, is produced 95% in the intestines! Another one, GABA, can be produced by the friendly bacteria in the gut, and can help reduce feelings of anxiety, depression, and fear.

Mental Health and IBD

As you can see, the gut and the brain are basically best buds. But what does that mean for people whose guts are broken more frequently than the McDonalds ice cream machine? Unfortunately, IBD patients are at an increased risk for developing anxiety and depression, and frankly, can you blame us? We are forced to bear the burden of a lifelong chronic disease, often being diagnosed during some of the most mentally vulnerable stages of our lives. High school is hard enough without explaining why you spend half of every class in the bathroom. It might seem like the connection between intestinal health and brain health is bad news, but there is a silver lining. If we can change the health of our gut, we can change the health of our brain.

Diet and Mental Health in Healthy Individuals

In healthy individuals, certain diets have been shown to increase feelings of wellbeing, reduce feelings of depression, and improve psychological health. Both individual foods such as fruits and vegetables, as well as dietary patterns such as the mediterranean diet, have been linked to these benefits. Some foods are also associated with worse mental health. Sugar has been linked with mood disorders and depression. Excess sugar consumption is also associated with dysbiosis, a shift in the composition of the gut bacteria from helpful to harmful species.

Diet and Mental Health in IBD

In a study presented at Digestive Disease Week 2020, researchers categorized IBD patients into two groups, a high sugar group (>100 grams per day) and a low sugar group (<100 grams per day). They found that those in the high sugar group had increased feelings of fatigue, trouble with social engagement, feelings of depression, and trouble relaxing compared to IBD patients in the low sugar group.

It is important to note that sugar containing whole foods such as fruit have been strongly linked to positive health outcomes, and should be considered differently than sugars from processed foods. Added sugars from processed foods such as soda or candy are associated with an unhealthy gut, and worse overall health.

I think this is such an important study, not only because it has practical implications for IBD patients, but also because it opens doors for patients to take control of their own mental health. I don’t think I've ever had a conversation with any GI doctor about mental health, despite the increased risk we carry with IBD. Until that changes, it is reassuring to know that we have the option to eat in a way that is associated with good gut health, and therefore good mental health.

References

Choi K, Chun J, Han K, et al. Risk of Anxiety and Depression in Patients with Inflammatory Bowel Disease: A Nationwide, Population-Based Study. J Clin Med. 2019;8(5):654. Published 2019 May 10. doi:10.3390/jcm8050654

Knüppel, A., Shipley, M.J., Llewellyn, C.H. et al. Sugar intake from sweet food and beverages, common mental disorder and depression: prospective findings from the Whitehall II study. Sci Rep 7, 6287 (2017). https://doi.org/10.1038/s41598-017-05649-7

Stranges S, Samaraweera PC, Taggart F, Kandala NB, Stewart-Brown S. Major health-related behaviours and mental well-being in the general population: the Health Survey for England. BMJ Open. 2014;4(9):e005878. Published 2014 Sep 19. doi:10.1136/bmjopen-2014-005878

Parletta N, Zarnowiecki D, Cho J, et al. A Mediterranean-style dietary intervention supplemented with fish oil improves diet quality and mental health in people with depression: A randomized controlled trial (HELFIMED). Nutr Neurosci. 2019;22(7):474-487. doi:10.1080/1028415X.2017.1411320

Brown K, DeCoffe D, Molcan E, Gibson DL. Diet-induced dysbiosis of the intestinal microbiota and the effects on immunity and disease [published correction appears in Nutrients. 2012 Oct;4(11)1552-3]. Nutrients. 2012;4(8):1095-1119. doi:10.3390/nu4081095

What I Wish My Newly-Diagnosed Self Knew

Sitting in the patient chair, hearing your doctor say “you have Inflammatory Bowel Disease” can be terrifying and change your life in a matter of seconds. These words come with both a massive feeling of relief and validation, knowing that your symptoms are not just in your head and that you will finally receive the help you deserve. But, along with this relief, comes terrifying thoughts, too many google searches, and the realization that you will have this diagnosis for the rest of your life. Feelings such as anxiety, fear, and loneliness follow with no sense of direction. When looking back at my newly diagnosed self, I wish I could hug her and tell her everything I know now.

It‘s not your fault 

The guilt that comes with a new diagnosis is unexplainable. My mind wandered, time and time again, over what I might have done to cause my diagnosis. Was it loving toaster strudels as a kid and eating a few too many? Was I too stressed at my internship? Was it previous medications that disrupted the microbiome in my gut? The truth is, you can let your mind wander for as long as it wants, but you are NOT the reason behind your illness and you are NOT at fault. Many people, including myself, strongly believe and are determined that everything has a purpose and that everything happens for a reason. Although some may argue this belief, obsessing over what may have caused your diagnosis and blaming yourself will do nothing but harm. Inflammatory bowel disease is not the result of a bad decision or bad karma, and something that is most important to understand is that you are not to blame. Once you come to peace with your diagnosis and become confident in the unknown, you will begin to heal in ways you never have before. 

The importance of your healthcare team 

As a young adult diagnosed with Crohn’s disease, I was scared, lonely and afraid. After years of fighting for a doctor to take me seriously, I felt unworthy of receiving proper treatment and advocating for myself to my healthcare team. With help from a handful of individuals, I slowly realized that I should be looked after by healthcare professionals that listen, support, and are trustworthy. Not only does this apply to gastroenterologists, but also to other medical professionals that make up your healthcare team. If your gastroenterologist does not support you and undermines your symptoms, shop around for a new gastroenterologist that makes you feel comfortable, heard and safe. Additionally, a gastroenterologist is not the only medical professional that should be on your team. If you are able, reach out to a dietician, nutritionist, or naturopath certified in food nutrition to receive guidance on diet, food choices, vitamins, and supplements to support your health. Lastly, do not be afraid to seek out help for your mental health. The stress that comes with a new diagnosis can be extremely heavy, and for some, stress can aggravate GI symptoms and flares. The best decision I made was seeing a therapist to help me through my past traumas and transition into entering society post-diagnosis while dealing with debilitating symptoms. A wide range of healthcare professionals will allow you to thrive and succeed in ways you didn't even know were possible. Here in Canada, dieticians, nutritionists, naturopaths, and therapists are not covered by OHIP. If you do have insurance, these types of professionals are usually covered. If you are not able to cover the costs for these additional healthcare professionals, reach out to your GI to see if there are any subsidized or low-cost options available to you. Also, many universities and colleges offer free or low-cost therapists and nutrition counselling. 

Find your support group 

An Inflammatory Bowel Disease diagnosis is scary and may leave you feeling as if you need to be independent through this journey as you don’t want to burden others. Putting up a wall and pretending like you are fine is something I did more times than I should have after my diagnosis. I had such a hard time being vulnerable and admitting I was not ok. With that being said, the best thing I could have done was confide in a few trusted friends and family members. Opening up to my loved ones allowed me to feel more comfortable asking for help when it was needed and having a safe space to vent. Opening up to my support system allowed me to express my fears and challenges, gave me the opportunity to have someone join me at healthcare appointments and to also receive help when I was flaring. 

If you are located in Canada, Crohn’s and Colitis Canada not only offers regional support groups where you can meet fellow peers with IBD, but they also offer a mentorship program where you have the opportunity to be mentored by someone who is experienced in navigating the hardships of IBD. Additionally, reach out to your schools accessibility centre to find out if there are any IBD groups with individuals around your age to network with. Lastly, joining Facebook or Instagram pages that connect others with IBD is a great way to speak to people who understand what you are going through.

Grief    

As a newly diagnosed young adult, the negative feelings and thoughts of living with a chronic disease for the rest of your life can be endless. Dealing with healthcare appointments and debilitating symptoms that not many other young adults experience can leave you feeling defeated and hopeless. Something important that I have learned throughout my journey is that it’s important to sit in those feelings and take the time you need to process them. Take time to grieve your old life and the life you pictured for yourself, but also remember everything positive that this diagnosis will give you. You will be stronger, resilient, and more empathetic to those around you. You will view the world in such a way that you never have before, and you will become more intuitive with your body and mind through this journey. If your feelings of grief become overwhelming, reach out to a trusted friend, family member or a mental health professional. Although my diagnosis has been challenging to say the least, I promise you there are things my diagnosis has given me that I am beyond grateful for and I wish I was reassured of when I was newly diagnosed. 

To the newly diagnosed IBD warriors, you are amazing, resilient and strong. An unpredictable and serious diagnosis such as IBD will be challenging and difficult, but you are not alone and you never will be.

Journaling with IBD: A Focus on Mental Health

During 2020’s intermittent quarantine, what has brought me more solace than anything is the act of journaling. As someone who was diagnosed with Crohn’s disease during the pandemic, much of my hospital experience was drastically different than others. Increasingly isolated from my loved ones, I could feel the weight of my diagnosis crushing me, the four walls of my hospital single closing in. 

For IBD patients specifically, mental health is tied so closely to our physical health. I’ve had days where my physical flare-ups make me double over; it’s no coincidence that those same days, my mood swings and sensitivity levels are out of control. In fact, this phenomenon is so common that there’s an actual term for it: the gut-brain connection. 

The gut-brain connection refers to how changes in our gut can have drastic impacts on how we feel and behave. Many tend to dichotomize our bodily systems, finding it hard to believe that our behaviors and moods can be swayed by what we eat and how our gut reacts. This is explained  by what’s called ‘bi-directional’ communication, in which our gut and brain talk to each other using different pathways. 

Re-focusing energy is powerful. With enough time, journaling can become a way to channel your energies into finding peace and introspection. What’s best about all this is that journaling can take any form you want it to. It’s simply a way to get your thoughts out on the page. Humans absorb so much information and stimuli during their waking hours; life, as it turns out, can be overwhelming at any point in time, regardless of an IBD diagnosis or not. 

Journaling should be a way to relieve stress, a way to declutter your mind. I’ve found it especially helpful to process my physical and mental pain; even doodling can help distract your mind for a few minutes. Especially for patients with IBD, a journal can be a place to record symptoms, reflect on treatments, or even track what foods you’re eating (Check out this article on how to start a food diary by David, a 2021 CCYAN Fellow!)

All you need is a notebook, even just a piece of paper, and a pen or pencil. Some people find it helpful to pair a journaling session with a few minutes of meditation: this is your choice! Whatever makes you feel the most grounded and relaxed. 

Here are a few journaling prompts to get you started:

How are you feeling right now? 

What does your body need? 

What is giving you energy? What is taking your energy?

What are you grateful for, at this moment?

What are some themes in your life right now? (rest, peace, healing, etc.)

Things that feel heavy today; things you can try and release today.

What do you need to let go of in order to move forward and grow?

What beliefs and assumptions are holding you back?

What do you have to be proud of? 

Where are you feeling stuck? Where are you feeling growth?

Challenges as a Crohn's Warrior in Malaysia

In Malaysia, Crohn’s disease is also known as “Western Disease” or “Rich People Disease.” The reason behind this is mainly because Crohn’s is a rare disease in Asia,  particularly in Malaysia, as compared to Western countries. Many in Malaysia have never heard of this disease. Therefore, they are not aware of the Crohn’s and colitis patients’ struggles with their pain, medical procedures and psychological issues. 

At the beginning stage, I had no one to guide me. I had no idea on how to handle my newly diagnosed disease. With no medical background, no one in the family or friends with similar conditions, I struggled to cope with this disease and my normal life. Can you imagine the struggles I faced as a first year university student with my condition? I was  alone and I didn’t even understand what was going on and my normal was no longer a  normal. The internet was my only resource for information other than my doctor. By reading  everything I could find in the internet, I slowly started to understand this disease. Back then,  there wasn’t even a support group for Crohn’s in Malaysia as the disease is relatively unknown to Malaysians. In fact, I didn’t even known about any other Crohn’s patients until I  met one almost a year later after my diagnosis. My gastro doctors encouraged me and other patients to start a group so we could create a support system to each other. Now,  newly diagnosed Crohn’s patients or caregivers in Malaysia have access to few channels  that they could use to discuss, ask, guide and support each other going through this painful disease. 

Living with chronic disease, I had to adjust and adopt to new diet and lifestyle.  Changes in diet were mostly trial and error in the beginning. I had to monitor my  consumption and take note of any changes. Why did I have to monitor those changes? It is simply because I wanted to avoid flare ups that were caused by certain food that I consume.  For me, I found that my Crohn’s is mostly under control when I avoid foods that contain eggs. So I have to ensure my daily food consumption is egg free. If I didn’t, I’d have to visit toilet frequently the whole day. Precaution is needed for Crohn’s patients because flare ups can happen in any situations, therefore any heads up is a good one to have. 

Apart from my diet, I had made some massive changes to my daily activities too. Since I’m an Ostomate, I have to ensure that I don’t partake often in hardcore sports in order to avoid stoma prolapse. 

The understanding and acceptance of IBD in society is still a challenge for me. Most of them, as  I mentioned above, do not know about Crohn’s disease. I remember one of my friends asking me “Sara, is your disease infectious?”. At that time, I just laughed and say “No, it  doesn’t”. The lack of awareness, although understandable, is a huge disappointment when  someone I confided in is not taking any initiative to understand it.

Stress is another thing that I started to consciously manage. What is the connection  between Crohn’s and stress? Well, stress generally affects a person emotionally and mentally as it damages a person’s emotional equilibrium. But it also affects the person’s health. Even a person without chronic disease can feel their health being affected by high stress levels. So, anyone with chronic health issues, such as IBD patients, have higher  chances of having a relapse and flare when they are stressed. It is imperative that I  recognize my stress inducers, my stress level, my tolerance level and ways to reduce stress  so that I do not have chronic flare ups. Although it is impossible to live stress free all the time, I  believe that I should try to manage stressful situations to the best of my abilities.

Navigating relationship with Crohn’s is complicated and challenging. Crohn’s has created ups and downs in my relationships with my family, friends and loved ones. In the beginning it was really hard to explain to them my condition. They did not understand the condition or why and how I got this disease in the first place at all. It took a while for my  family to accept my condition and now they are slowly getting used to it. They are a great  support for me at the moment, and my heartfelt thanks. 

Dealing with Crohn’s is tough enough and unfortunately, Crohn’s is not something  that we can ignore or that it will disappear one day. Every single day is a challenge for me because I go through physical and psychological pain. I have to survive, improve my quality of life and live my life as normal as possible; I hope more people will become aware of  Crohn’s disease, of patients’ struggles, and accept their conditions. Be kind even if you don’t see someone’s struggle, their pain or their decreasing health.

How Toxic Productivity Can Affect Chronic Illness

“The grind never stops” is a quote I’m sure all older gen-z and younger millennials have heard. Hustle culture is like the monster hiding under our beds just waiting to attack us the moment we dangle our foot off the bed. It’s the scary email we try to avoid, but eventually have to acknowledge is there. Our society places a great amount of pressure, on our generation specifically, to work hard and constantly strive for a lifestyle in which we are operating at an “optimal level”. This is deemed as success and this version of success should always be at the forefront of our minds and influence all decision making. Participating in this hyper productive hustle culture is difficult enough for the average person to achieve, but what does it look like for people that live with chronic illness? 

To put it simply, living with chronic illness(es) is hard. Personally, it is the most difficult thing I have ever experienced. With symptoms like chronic fatigue, anemia, and anxiety etc., paired with frequent doctor's appointments and stigma, one could imagine that it is virtually impossible for chronically ill people to participate in hustle culture. Unfortunately, being in this generation makes escaping from the plague of toxic productivity quite difficult. Growing up we have all heard the stories of the business person working 60+ hours a week to bring his dreams to fruition. This mentality has influenced our entire generation. Working hard should always produce tangible results, right? Well, not exactly. As someone that lives with IBD, overworking myself can have dire consequences. Stress and anxiety are common triggers for people living with IBD, so it can be exhausting to focus on extracurriculars, staying social, maintaining good grades, and overall performing “optimally” while you’re inches away from a flare up. Our culture’s ingrained toxic productivity can be seen as the genesis of this behavior. I regularly catch myself being filled with disappointment that my illness prevents me from working at the capacity that I deem as optimal. Blaming myself for the pressures that our society puts on this generation only adds fuel to the fire, but never addresses the true issue, which is our ingrained idea of hustle culture. 

As young chronically ill people, we must stay aware about never pushing our boundaries and our illnesses in the name of productivity. Productivity is a wolf in sheep’s clothing; it seems innocent enough until it comes and bites us, and that bite for many of us is a flare. It is never a moral failing if you aren't able to operate at the same capacity as your pre-diagnosed self or other able bodied individuals. As chronically ill people, we have so many unique challenges that we must acknowledge and honor. Here is a metaphor that I often remind myself of: 

“We are all running a race, and some people are completing laps in 7 minutes, and others are completing laps in 20 minutes. Some may have to stop to breathe, sit and take a brief rest, or even leave to grab water, but the timing doesn't matter, the effort and intention does. All effort is valid.”

In the metaphor above, the race represents toxic productivity and the one’s completing the laps in 20 minutes who have to frequently stop represents chronically ill people. Giving into the pressures of hustle culture and toxic productivity will only reinforce the cycle. So, for the college student that lives with IBD or other chronic illnesses, such as myself, who is putting excess amounts of pressure on themselves to excel in every facet of life, try to be conscious of allowing yourself the space to rest and recharge. “Rise and grind'' is hard to do when the rising part is the issue. Glamorizing and internalizing the generational curse that is hustle culture and toxic productivity can cause irreparable harm to ourselves. Remember, work does not equal self worth. 

So, when you’re in bed trying to get rest and all of your responsibilities and the ghosts of toxic productivity are whispering in your ear, try your hardest to ignore those voices, turn the other direction, and get that well deserved rest.