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:

1. Wash rice and lentils in a bowl, and add to a pot on a stove.

2. Add salt and turmeric and bring to a boil.

3. 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.

4. 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:

1. While khichdi cooks, heat up a frypan with ghee.

2. Add the onion. When the onion turns translucent, add the tomato.

3. Add salt so the tomato mushes up quicker.

4. Add the carrot and cover the pan. Keep stirring occasionally. If needed, add water to fasten the cooking.

5. When the carrot is soft, add the bottlegourd. Cover the pan and let it cook, checking from time to time.

6. After the bottlegourd is cooked as well, add the bell pepper.

7. 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.

8. Plate on top of the bowl of khichdi. You can add more ghee on top as per your liking. Enjoy!

9. 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.

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.

Caregivers: Spotlit in the Shadows

Recently, one of HONY’s long (12-part) post blew up, allowing another miracle to be added to the community’s ever-growing testament to human generosity and compassion. The posts follow the journey of Cristy’s Kitchen, through Cristy’s life, roles and perspective. A mother to 5 girls, she started experimenting with food recipes only when her first daughter started showing autoimmune illness signs as a teenager. It’s been made clear from her story that she first started her recipes, which have since garnered significant attention from many people all over the world, only because she wanted to help her daughters with their illnesses. Her life and actions speak of love, grit, determination, hope and faith, and I think some of us, as patients of autoimmune diseases, can relate to having people like her in our own lives, carrying us in our darkest moments.

 Caregivers undoubtedly play an immense role in a patient’s life. It can be argued that for chronic conditions like IBD, personal relationships with family, friends and significant others can ultimately only last if the relations juggle their roles between being caregivers and their normal roles (father, mother, sibling, significant other, friend). The mix of the uncertain characteristics of chronic autoimmune conditions with the current overburdened healthcare systems across the globe, caregivers are the ultimate backbone that help people survive not only through the physical realities, but also through the psychological, emotional, and financial turmoil. Yet for all we say about invisible diseases, not much is said about this significant invisible labor. Caregivers not only help us, patients, but are the unacknowledged help to doctors and hospitals, when they help buy time for diagnosis, and take our rollercoaster up-and-down rides with us.

  Caregivers: A South Asian Context

Generally, in south Asian communities, mothers already shoulder the huge burden of bringing up children and caring for their wellbeing, oftentimes even at the cost of their own health. For young adults with IBD in India, the role of the mother as a prominent caregiver is heightened and intensified for two main reasons: (1) overburdened private and public healthcare systems, (2) lack of mental health normalization and support infrastructure. It is also important to acknowledge, however, that prominent caregivers can also be fathers, older siblings and other family members just as much as mothers. It is normalized to blame these caregivers, more often than not mothers, for any “defects” that a child may have, whether that is due to the child not adhering to the community’s rules, or because the child is unable to perform in a way that the community deems fit. IBD and autoimmune conditions from a south Asian lens is widely considered a fault, and one that cannot be tolerated to come out of nothing, leading to further the idea of blaming the mother for not doing enough and/or failing to stop the illness. However, as patients, we eventually come to accept and acknowledge the curious nature of autoimmune diseases (that they cannot be predicted, nor caused or solved), and we witness not only our grit during hopeless times, but also frequently, the origin of that: the love, grit and hope our caregivers show. To have that labor and foundational support go unwitnessed and unpaid by the world around us is one thing, but hearing negative comments that place blame and point fingers is another. 

In my personal circumstances, my mother was the first person I revealed my symptoms to, the only person to accompany me to every doctor’s appointment and lab appointment, and stayed awake with me on countless nights as I turmoiled through the pain and bathroom visits during my flare ups. She outstandingly also showed up when I took the decision to spend a year in rural India, with limited and chaotic bathroom, food and water provisions, riddled me through my bursts of insecurity, and stood as an unwavering pillar of physical and emotional support when I was hospitalized. I can say for certain that I only survived ulcerative colitis and my year in rural India because of her. In my sibling’s case, my father went above and beyond being his main caregiver, and at times, mine too. And yet, while I try to distance myself repeatedly from the guilt of having an illness that has no clear cause, I also deal with people blaming my parents, trying their hardest to find a recipient for the blame. It is heartbreaking.

 These comments not only arise from common people, but can also show up in the tone and words from well-educated and trustworthy people, like doctors. While it may seem that the above actions are on the list of expected actions that a mother/caregiver has to carry out, it is important to highlight that it is absolutely not necessary and still constitutes labor and time that could be used elsewhere in return for payment. Additionally, from a productive economy/labor perspective, IBD patients are almost only “productive” to the economy due to the invisible support of their caregivers. This is yet another reason that begs policymakers over the globe to consider the unique circumstances of patients of chronic autoimmune diseases and recognize the unbeatable power of caregivers in their fight.