The Difficulty of Finding a Treatment

For the ordinary individual, health is accepted as a given. It’s a part of life that mostly runs in the background like a minimized window on a computer. It’s always running, keeping us alive, and impacting our physical and mental states. Yet again, for most people, it’s rare to directly confront it on a minute to minute, or even second to second basis. Instead, it emerges at the forefront of life either by active and deliberate personal choice, or when something goes wrong. When a previously silent computer program running in the background becomes unresponsive, what was once insignificant becomes a major issue. To a greater extent, when that disruptive program causes our computer to crash and lose all of our work, it’s catastrophic. In a similar way, the typical individual goes to the doctor only on the occasions when their health is compromised by infection, injury, or other issues. Plus, when our health is stable and we are well, the changes we make, like starting a fitness regime, new diet, or implementing mindfulness strategies to our lifestyle, are done by choice.

However, when you live with a chronic illness, health management becomes significantly more complex. For one, chronically-ill patients often do not have the benefit of having a lifestyle defined by stable health. Chronic illness is by its very nature unpredictable. Diseases like Crohn's disease and ulcerative colitis revolve around periods of peaks and valleys - remission and flares. Once again, living with a chronic condition transforms the nature of managing health. The process of searching for, utilizing, and adjusting to a treatment for inflammatory bowel disease, or other chronic conditions, is one of trial and error. Unlike treating the common cold or a broken bone, the path to recovery is much less clear cut. Personally, I have tried various medications across a variety of different medication classes only to discover that they were not effective for treating my particular case of ulcerative colitis. It takes constant monitoring of your symptoms, and a commitment to embracing change to successfully navigate the healthcare system as a chronically ill patient.

It’s a difficult reality that many patients struggle through countless medications, clinics, and treatments before finding relief. Simply put, when you live with a chronic illness, your health is never certain. It’s unlike managing short-lived, common conditions, because there’s no clear timeline. Patients are forced to adjust to a new normal. This new reality is a reality where an individual must persist despite burnout, despite anxiety, and despite certainty. It involves significant sacrifices in one’s lifestyle, and even identity. Confronting health is no longer a special event or a choice, instead it’s a part of the daily routine. I believe this is part of why accepting illness is full of so many emotions, and why fatigue can easily take over. Everyday, patients are fighting a difficult, and often invisible, battle while living normal lives full of other responsibilities. The process, and the challenges, involved with finding and managing treatment do not make this balancing act any easier. Thus, it’s important to recognize the difficult, frustrating, and exhausting experience of patients worldwide. After all, despite illness, set-backs, and struggles, we persist to live lives as friends, artists, and advocates.

How My Mental Health Was Affected by IBD

Mental health has been on my mind a lot lately. From hearing it in relation to the COVID-19 pandemic, to having conversations about the need for more resources for IBD patients, to dealing with my own experiences with depression and anxiety - mental health resources are perhaps one of the most underrated and underfunded sectors of healthcare. I realize this as I’ve gotten older, immersed myself in the medical field, and as I have utilized it for my own mental health after being diagnosed with ulcerative colitis (UC) in 2016. 

I bet many of you have also dealt with IBD affecting your mental health whether you realize it or not. For most of us, we were the only person we knew who had IBD at the time we were diagnosed. Some of us may not have even heard of it until we were told after our colonoscopy or endoscopy. The world around you suddenly feels a lot busier and bigger, and you feel very small and alone. Alone, wrapped up in your thoughts, your pain, your exhaustion, your fear. None of us asked for this. What did we do to deserve this?! In the days after my colonoscopy, this thought permeated my mind and I wanted to curl up in a ball and wish it all away. 

But, you can’t do that when you are a busy pre-med student working full time and taking classes! We are expected to stay strong and keep up our front that says “Everything’s fine,” when, in fact, we’re not. I had great people to talk to and that would listen to me, but I still went through a mourning process. I mourned my life before when I thought I “just had a sensitive stomach.” I mourned that fact that my diet would probably change and change again and that I maybe would have to be on immunosuppressive medication. I dreaded the future conversations that would come up when someone would ask why I had to go to the bathroom so much or why I couldn’t eat or drink something. Really, everything’s fine…

But, it’s not. CHRONIC is a word that I hoped never to hear in regard to my medical history. We now have a new label that we must carry for the rest of our lives, and it’s anything but predictable. We have to explain this diagnosis so many times we feel like it might actually define us. The reality of my UC diagnosis began to truly sink in and anxiety began to seep into my daily life. My energy and concentration was poured into reading about UC, finding a better “diet”, looking for tips on how to achieve and stay in remission, and finding some kind of outlet for my anger and frustration.

Honestly, I should have given myself a little more time to process and try to seek the help of a mental health professional. Now, I think, I should’ve thought about my IBD and mental health together rather than separately. I let myself have a little time to mourn my UC diagnosis, but I thought I needed to be strong and keep my diagnosis to myself, much like others had before me. If we don’t look sick, perhaps no one will know. Even when we try our best to be strong and adapt to this normal, our mental health often still ends up suffering. 

I think it would make such a positive difference in the lives of so many if we are all equipped with a medical and mental health treatment plan after being diagnosed with IBD, because the fact of the matter is that the mental health symptoms are just as debilitating as the physical symptoms of IBD, and they’re often intertwined. We need this kind of support as we manage our diagnosis - which sometimes can land us in the hospital or needing major surgery. I can’t speak to these kinds of experiences, but they can be traumatic in their own ways. How many failed medications or pain does one endure until they receive a potentially life-changing surgery? Thinking of the mental health hurdles that my co-fellows have dealt with and shared so vulnerably leaves me in awe of their strength. When they share what they have lived through, it also makes me sad that there was not adequate mental health services available to some of them when it could have offered an outlet for some of their pain.

Even now, almost 5 years out from my diagnosis, I take medication for my depression/anxiety and have re-established a relationship with a counselor that has experience in treating clients with chronic illnesses. I still go through the peaks and valleys of life and IBD, but, now, I’m better equipped to handle the lows when they hit or when a flare affects my mood and interest in doing things. I want the mental health support that has been so instrumental to some of my healing to be more accessible and affordable for those with IBD in the near future. 

I hope speaking candidly about mental health and sharing some of these reflections helps you feel less alone and more validated in what you’ve been going through. The process of untangling all of these emotions is normal when grappling with a chronic illness diagnosis and what that means for you and those you love. Everyone processes major life changes and trauma differently, but don’t be afraid to ask about mental health services when you see your GI or primary care provider. Finding the right mental health support could be the treatment you never knew you needed. 

Explaining Chronic Pain

This article is sponsored by Gali Health.

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One of the most troubling and tricky feelings of the human condition is pain. It’s the body’s warning signal that something is wrong. It always seems to show up unexpectedly. It’s the world’s worst party guest. Seriously, it could at least bring a party gift, or an extra bag of chips and salsa to share. Instead, it interrupts the flow of midnight ragers and days of routine alike. Pain is the ultimate consumer. It takes, absorbs, and swells, without giving any of itself up. To make it even more complicated, pain comes in more hues, flavors, and shapes than can be counted. Pain is a universal experience, but the experience of pain is unique to each individual. 

There is round, smooth, aching pain that rolls around the body all day. There’s sharp, jagged pain that cuts, stabs, and leaves a metallic taste on the tongue. There’s pain that shapeshifts. It howls like a werewolf, then sizzles like the sting from an insect. I could go on, but the list of the types of pain is again endless. That said, living with a chronic illness like IBD means tasting an entire buffet’s worth of pain types. Despite the fact that pain is so specific, and individual, people often try to measure and compare pain. As a chronically ill individual, it can be frustrating to have your pain compared, and rationalized by others. For instance, people will often compare the abdominal pain from ulcerative colitis, or Crohn’s disease to a stomach ache. In reality, chronic pain is much different from everyday pain. 

When the pain from chronic illnesses is compared to pain from other illnesses, a large part of the context is ignored. Patients with chronic illnesses and pain have to confront pain oftentimes on a daily basis, and manage pain oftentimes without a totally effective treatment. The pain from a stomach ache, or a stubbed toe will eventually fade, and if it doesn’t, there is generally an effective treatment available. With a chronic illness, no such treatment necessarily exists. There is no timeline for recovery from the pain. Instead, it can be endless and unclear with multiple trials of various treatments required in order to find relief. In essence, chronic pain has no end deadline.

Despite this, the chronically ill often live normal lives everyday. Patients and pain sufferers go to college, go to work, and even to social events despite their pain. It’s especially important to remember this, because for all of its flavors, pain can be quite invisible. Dealing with pain is a challenge, and a burden, but millions of people around the world surmount the obstacle of pain everyday. Accommodations for patients make living with this weight easier, and enable us to be more active members in our communities. Still more work needs to be done to improve the quality of life for those dealing with pain. The compassionate way to treat the chronically ill, is the most inclusive way and the way that eliminates the disadvantages of the disabled. In the future, I hope all pain is treated with the utmost consideration and care for the individual. After all, if that was the case, there would be a lot less physical, and mental pain in this world.

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This article is sponsored by Gali Health

Gali Health is an AI-based personal health assistant app helping people with inflammatory bowel diseases (IBD) proactively manage their condition. Gali gathers knowledge from daily interactions and health monitors to tailor support and information to your specific IBD experience.

Thoughts on IBD in the Workplace

Please provide your most recent job history. Done. Proceed to the next page. Do you have a disability that you would voluntarily like to disclose? This can include autism, blindness, cerebral palsy, missing limbs, autoimmune conditions like lupus, gastrointestinal diseases like Crohn’s disease or IBS…I blinked, and stopped. What did I just read? 

In the past, I had always checked No, I don’t have a disability or history of disability. But now, as I start to look for Physician Assistant (PA) jobs, I can’t ignore the fact that I live with ulcerative colitis (UC) and flares can rear their ugly heads even when I take the best care of myself. I never had to sit and ponder this question before. Because of the way disabilities are viewed by most people, stigma swirls around it, leaving previously unaffected people like me unaware and uneducated about progress being made and the struggles still faced in the workplace. Disabilities are commonly viewed with negative connotations - several of my coworkers and other colleagues that live with chronic illness and/or disabilities have highlighted this and spoken powerfully against this negativity. Living with a disability doesn’t mean that you don’t have as much to offer. The people I’ve met through the chronic illness and disability community are some of the most resilient, creative leaders I know. We face our challenges and continue living and advocating against all that is physically or mentally against us - we have to draw incredible strength and grow up sooner and in ways that most others don’t. 

However, I still struggled with multiple emotions as I sat, mulling my thoughts, stuck on this page of a job application. I have never considered myself as a person “who has a disability.” I felt guilty - would those with disabilities think that I don’t support them since I don’t want to group myself with them, giving myself another label that’s often viewed as weak? Am I misrepresenting those who do have disabilities because my UC has been so mild and I am largely functional? I felt that I don’t belong in the “disability group”, but I also can’t deny that I have a chronic illness that can be disabling in a variety of ways. I definitely consider myself lucky and blessed, but I know that my UC can change throughout my life and potentially become more difficult to control. I struggled to work through these thoughts, but then thought about how my growth this year from being more involved with advocacy has given me tools to advocate for myself and to continue learning from this community. 

My options were: 

1. Yes, I have a disability, or have a history/record of having a disability

2. No, I don’t have a disability, or a history/record of having a disability

3. I don’t wish to answer

What should I choose? It had to be either #1 or #3. I couldn’t lie - I was more afraid that it would not go over well if I did get the job and had to bring up my UC later to my employer. But then, if I marked “yes”, could that jeopardize the chances of me getting interviewed or getting a job? I’ve heard awful stories about those who hid their disability from their employer because they knew it would affect them being hired or even interviewed. Luckily, I was working with another healthcare provider who had been diagnosed with lupus over the past year and was also learning how to navigate her chronic illness in the work environment. I asked her what she thought and we ended up having a candid conversation - I realized that if marking “yes” caused me to not get an interview or a job, then that job wouldn’t have been supportive enough for me anyway. Perhaps this is my stubborn streak coming through, but I hope that working in the medical field will hopefully make potential employers more understanding. However, I know that the stigma that encircles chronic illness and disability still permeates the workplace, and this fact will stay on my mind throughout my job search. 

In the end, I did mark “yes.” It is more important to me to have the chance to advocate for myself and be supported rather than hiding my diagnosis out of potential embarrassment or fear of how I would be treated because of it. Maybe this will backfire, but by being up front about my UC, I’ll feel more comfortable in my workplace. I hope that I’ll be supported enough to communicate any issues I’m having or if I do end up needing some sort of accommodation in the future. I’m very excited about applying for jobs and starting this new chapter in my life and career as a PA, but I still have much to learn about disability in the workplace. I hope by learning to navigate these waters, I can help others who may be in the same situation - questioning if they fall into the disability category or not, wondering how they should approach disclosing (or not disclosing) their condition to their employer. Since the US just hit the 30th anniversary of the Americans with Disabilities Act, I also plan to continue to educate myself and learn more about the disability community in conjunction with chronic illness. We should never have to choose between our career and our health, and I hope I can join many others who are working to make this a reality for all who are affected by chronic illness or disability. 

The Invisible Rights of Persons with Invisible Disabilities Act of India

On July 26, 2020, the United States celebrated the 30th anniversary of the Americans with Disabilities Act (ADA). I’ve known about the ADA for a few years now, and I think that it is a great thing! From an outsider’s perspective, what I admire the most about the ADA is its wide scope. The list of medical conditions that can be evaluated for disability benefits seems exhaustive and as inclusive as possible. Disability is very difficult to define in precise terms as it can be a very personal experience. Hence a policy like the ADA which has a wide scope of application should be adopted by every country that wishes to protect the interests of the disabled. 

The Rights of Persons with Disabilities Act (RPwD Act) is the Indian equivalent of the ADA. The full text of the Act can be accessed at http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf. The RPwD Act is introduced to be “An Act to give effect to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and for matters connected therewith or incidental thereto.” The definition of a “person with disability” adopted by the Government of India is the same as mentioned in the Convention - “a person with long term physical, mental, intellectual or sensory impairment which, in interaction with barriers, hinders his full and effective participation in society equally with others.” India was one of the first countries to ratify the convention. We did it in 2007. But the RPwD Act came into force only in 2016, and it is yet to be implemented by all the states of India. 

Leaving aside the poor implementation of the Act, the list of conditions that can qualify someone for disability benefits is very short and includes only 21 conditions, most of which are visible disabilities. People with these conditions are evaluated and given a disability certificate that mentions the extent of their disability as a percentage. This percentage determines the extent of support they can receive from the government. The RPwD Act lists all the rights and entitlements of a disabled person. It also lists various measures taken by the government to protect the interests of people with disabilities which include reservations for disabled persons in various areas like employment, education, land allotment, and developmental schemes. 

Ever since I began graduate school, I’ve had to speak up on several occasions for receiving appropriate accommodations. In these discussions, to highlight the seriousness of my condition, I often bring up the fact that patients with Inflammatory Bowel Disease (IBD) who satisfy certain conditions, and patients with ostomies receive Disability Benefits in the United States. However, since the Government of India (GoI) does not recognize ostomy/IBD as conditions that qualify someone for disability benefits, the university is not obliged to provide me any support. A couple of my friends suffer from multiple chronic conditions but do not receive any disability benefits, because they’re not disabled legally. 

The definition of a person with a disability as mentioned in the UNCRPD and adopted by the GoI is a dynamic one and hence, policies that are meant to benefit the disabled must be dynamic too. However, to my knowledge, there is no mechanism in place to extend the list of disabilities. Compared to the ADA, the RPwD has a very limited scope of application. Speaking as a young adult with IBD, most of us do not have insurance. We face difficulties in gaining and maintaining employment. The same is true for education. Our condition is treated as a taboo. Every aspect of our life is affected by our condition, and for those with ostomies, the problems get magnified. Is this not what a disability is defined to be? A person with a missing toe is 10% disabled according to the disability evaluation guidelines. A person with a missing colon is 0% disabled. Makes sense, right?

The GoI has recently published the draft of the National Policy for Rare Diseases 2020. The World Health Organisation (WHO) defines a rare disease as an often debilitating, lifelong disease, or disorder with a prevalence of 1 or less, per 1000 population. However different countries have different definitions. In the United States, a rare disease is one with a prevalence of less than 6.4 per 10000, and in Japan, the parameter is 1 per 10000. India on the other hand has no such parameter because of a lack of data which is due to a lack of proper health infrastructure that would enable such data collection. The draft mentions government support for the treatment of certain treatable conditions with an upper limit of INR 15 lakh or roughly 20000 USD. The government does not plan to provide any support to those with long-term conditions, citing a lack of resources, and recommends setting up digital platforms for donations. India spends less than 4% of GDP on healthcare. A lack of resources does not seem like a justifiable reason for refusing to support those with chronic and rare conditions when the fact is that India has one of the lowest expenditures on healthcare globally. 

Coming back to the topic of disability - will people with rare, untreatable, lifelong conditions, receiving zero support from the government, be able to participate in society as effectively as others? Are they not disabled as per the definition adopted by the GoI? The fact is that the RPwD act is itself disabled. It does not do justice to the millions of people suffering from many conditions that impact the quality of life, social participation, and academic and professional outlook. The fact is that most patients struggle to fund their treatment because chronic and/or rare conditions often require expensive medications and with limited or no insurance coverage, the battle to survive and stay alive is the one that most are fighting. Education, employment, and social integration are not even in the picture. 

The exceedingly slow pace of healthcare reforms and the lack of support for people with various chronic conditions that severely impact their lives makes me sad. I don’t know when the situation will improve. If in 2020, a country like India, which has ambitions of being a superpower says that it doesn’t have enough resources to support its citizens with rare chronic conditions and has a list of disabilities that includes only 21 conditions, what hope can I have? I also feel like the general population has never considered the problem of healthcare seriously. It has never been an issue during elections. So I guess, it’s us who are to be blamed. There’s a lack of unity among patient communities too. How do you rectify all these? Honestly speaking, I’m a naive person. The only thing that I can say is it shouldn’t be that difficult to come up with a system that ensures equal and unhindered access to opportunity for people, irrespective of their health condition. From my vantage point, I see a lack of motivation amongst our leaders, the healthy, and the abled population to work on issues related to the healthcare sector. I hope the situation improves in the future.

India celebrated 74 years of independence on 15th August, but young adults with chronic conditions like Inflammatory Bowel Disease are yet to be liberated from various shackles that bind them to the ground and hamper them from living a free, independent, and fulfilling life. 

That’s all from my side this month. Sayonara!

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References

1. https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

2. http://www.tezu.ernet.in/PwD/RPWD-ACT-2016.pdf

3. https://indianexpress.com/article/cities/mumbai/maharashtra-yet-to-notify-rules-to-implement-disability-act-6534983/

4. https://upload.indiacode.nic.in/showfile?actid=AC_CEN_25_54_00002_201649_1517807328299&type=notification&filename=Guidelines%20notification_04.01.2018.pdf

5. https://main.mohfw.gov.in/newshighlights/national-policy-rare-diseases-2020

6. https://www.tribuneindia.com/news/archive/nation/india-s-per-capita-health-spending-dismal-rs-1-657-855027

7. https://www.livemint.com/news/india/india-s-economy-needs-big-dose-of-health-spending-11586365603651.html

Navigating Diet Culture with IBD

By Amy Weider

Growing up food was always a celebration for my family. Food was how and why we would come together and build traditions. We would eat lobsters for every New Years to signify good luck and we'd come together to break the claws and soak them in butter. I remember watching my mother make us a classic midwestern casserole on a weeknight and the Food Network was never not on in the background. Food has always been such a critical part of my life. It brings me joy and memories. So when I started getting sick around 9 years old my relationship with it was forced to change. I began to have severe stomach pains and was unable to hold any food down. The first instinct when someone is having intestinal issues is to always investigate diet. My loving mother quickly made the switch to all-organic everything, bland food, and no more sugary drinks. At 10, I very quickly had to change what I ate and go on intense diets. It was hard for me, as food is such an important part of my life and a means of joy. But nevertheless, my family supported me through it and we went through the motions. Gluten-free for a bit, dairy-free, liquid-based only, we tried it all. 

Alas, nothing worked. I was still, if not more, sick and constantly exhausted. Once the diets failed, I was given a colonoscopy and ultimately I was diagnosed with Crohn’s Disease. My Crohn's Disease was not fixed by a diet. In fact, no Inflammatory Bowel Disease (IBD)is caused or cured by food. Diet can help with inflammation or regulation of the disease, but diet also affects every IBD patient extremely differently. Most often, this is not how it’s portrayed and it’s hard for folks with IBD to carry the weight of the assumption that there is a one-size-fits-all cure. Ever since I first became sick, I have had people tell me constantly that if I ate a certain way I'd be fixed and that it is my fault I developed such nasty health problems. Hearing these things as a kid made me aware of diet culture very early on. 

Diet culture is the world we live in. It is everywhere. Diet culture can be defined as the patrolling of people’s weight under the guise of health, while it is really about control, shame, and reinforcing eurocentric skinny body standards and eating trends. Concrete examples of diet culture are folks labeling certain foods as “good” or “bad”, or the shaming of others for not eating the “right things.” Diet culture and the weight-loss marketplace is a $70 billion industry. There is no way of avoiding these harmful tactics of major companies marketing off of your body’s imperfections and longing to achieve the societal standard of a femme body. It becomes very difficult to balance the thin line between diet culture and a change in your nutrition for your health’s sake. Specific diets that are used to help manage IBD are often glamorized as the “new, hot trend that will make you drop ten pounds quickly!” There needs to be a greater understanding of how privileged it is to merely treat these diets as fads. They are often highly inaccessible, expensive, and fail for those who are just casually attempting them. But for others, for example those who have Celiac, this isn’t an option for them. There is so much nuance that is frequently overlooked when prescribing diets and there needs to be more attention given to diet vs. health and nutrition. The mask that is diet culture can very quickly take over one’s life.

When you Google “Crohn’s Disease” you cannot miss the slew of diet suggestions for anti-inflammatory foods or titles like “Gluten-free Fixed My Life!” Hearing people make statements like “you could cure that by eating ‘blank’,” has become a huge trigger for me. My relationship with food has had its rocky times, but it’s still a place I find deep comfort. Comments like these stem directly from diet culture and the invalidation of lived experiences. There is no right way to have Crohn’s Disease. Everyone’s life experiences differ greatly and the main lessons I’ve taken away from mine are to be open, ask questions, and not push assumptions onto others. Open a space for folks to guide a conversation about their dietary restrictions and needs if that’s what they want. NEVER suggest a new diet to an IBD patient unless you are their medical provider. Trust me, we have heard everything.

The "Luxury" of Advocacy

By Nikhil Jayswal

DISCLAIMER: This article does not portray a complete picture of the state and scope of patient advocacy in India. It is my personal opinion based on my personal experiences.

When I tried to find a definition for “patient advocate” on the web, I found not one but several different definitions; each definition listing out various duties of an advocate. After reading various definitions, I’ve come to understand that a patient advocate has three major duties:

1. Educating a patient about his/her condition and the available treatment options

2. Helping a patient navigate the healthcare system and make the “right” choices

3. Speaking for/against policies that protect/endanger the best interest of a patient

If we think about it, doctors are best eligible to be good advocates. They understand the disease the best and they know the system the best. However, as participants of an under-funded and over-burdened healthcare system like the one that exists in India, doctors struggle to be the best advocate that they can be. India therefore desperately needs a community of advocates who can educate and help patients make well-informed decisions. Articles and papers can be found on the web advocating for the creation of patient advocate groups in India.

Patients themselves can be good advocates too. Experienced patients with a good understanding of their condition and the healthcare system can guide other patients to make the “best” choices. In my experience though, sadly, not many patients understand their condition very well. Many patients also shy away from educating and helping other patients because of the stigma associated with sickness. This is also a major reason for the lack of support groups in India.

In such a scenario, how are patients supposed to make well-informed decisions? How are we supposed to act in our best interest? There is a select group of patients though, that have that “luxury” and an entire ecosystem exists, which this group of patients can leverage to get the care that they understand is in their best interest. 

Patients with strong socio-economic backgrounds have a larger plethora of treatment options at their disposal. A large number of hospitals and doctors exist that cater to this special group and provide them with all the information these patients need to make a choice. No diagnostic is inaccessible to them and their voice is heard keenly. They advocate for themselves and the system advocates for them too. 

I hold no grudges against this population of patients, but the thing that prompted me to write this article is that the socio-economic background of a patient dictates his/her access to information, treatment options, and patient rights. There is virtually nobody who will advocate for you if you do not belong to a select population. This huge divide disturbs me. There are a number of reasons for this divide and it’s a complex situation. Poverty, illiteracy, lack of sufficient government expenditure on healthcare, income inequality, social divide, etc. all contribute to creating a system that is so constrained that it takes away your voice and choice unless you have a privileged background. While such scenarios may exist everywhere, the larger population of patients in India often find themselves in the dark and struggling to protect their best interest.

The consultation times in hospitals that deal with the larger population of patients are often in minutes, sometimes even less than 5 minutes. With a disease that’s as complex as inflammatory bowel disease (IBD), that is in no universe sufficient for a doctor to explain what’s happening to their body to a patient. With few informed patients, it then also becomes difficult to find a reliable peer group. IBD can also be a costly disease to manage, and many patients find themselves without insurance, or with insurers who refuse to cover patients with a pre-existing diagnosis. I was one of such patients and eventually, I went bankrupt while I was still severely ill. Government schemes target those who live below the poverty line and I was not one of them because I did not have a certificate, even though I had no money. Getting that certificate is a lengthy process and I did not have the time for that as my disease was progressing very aggressively. I felt helpless and I contemplated suicide many times because of my financial inability to get treatment. And in fact, many people do commit suicide when they find themselves in that situation. Those who are eligible for financial support from the government, often face harassment by middle-men. I can go on and on about the skewed system that basically takes away your dignity and leaves you feeling guilty about having a disease that you did nothing to contract. You don’t understand what’s happening to you. Most of the treatment options are beyond your reach and you can’t ask for help without breaking your back. 

As a young adult, which is the age group where IBD is most prevalent, a lack of advocates intensifies the challenges that arise from getting diagnosed with IBD in India. As a young adult, you do not want to feel so helpless. It takes a huge mental and emotional toll on you. You feel like a burden on your family. You feel powerless against this disease. Depression and isolation intensify these feelings and life can seem pointless at times. Education and employment are hindered and you face discrimination. There is no law to protect you from that discrimination. Your self-image deteriorates. Self-harm and suicidal thoughts can occur frequently in the absence of support. Even with support, sometimes the pain is too much for some to handle, and there have been instances of suicide by young patients in the Indian IBD community because of lack of proper support.

This is why advocacy to me, seems like a luxury in India. And this is why I had to write this article. I have many friends who are struggling to get a basic treatment, and I know people who deteriorated their condition due to a lack of information and counselling. I now know many kids and teens with IBD, and I worry about their future. Without advocates to educate patients, to speak for their rights, to help them make better choices, the young adult population in India cannot be productive and fulfill their potential. India now has the second-largest IBD population after the U.S. Therefore, there is an urgent need in India for advocates who can act as a voice for patients. And I sincerely believe that the people who are lucky enough to advocate for themselves need to come together with those advocating for the lesser privileged population of patients, to create an inclusive environment where every patient gets an equal chance to fight the disease.  

In a larger spirit, I want to end with some words of Claire Wineland, with whom I absolutely fell in love, after listening to her talk about her condition and her views on life. When I tried to contact her, I found out that she had died. I encourage you all to watch her on YouTube. She remains the best advocate I’ve ever come across.

“... I'm actually here to talk about how do we change the way that we treat sick people. How do we stop pitying them and we start empowering them? The way that our society works, we teach sick people that when they are sick, somehow, someway, they cannot be as happy as normal healthy people. We teach them that their happiness, their contentment in life, their joy in life is tied to how healthy they are. ...”

“... Innovation doesn’t happen because there’s some person who’s in some great circumstance and everything is going well and they get on a roll and they make something for the world.  Innovation happens, art happens because of suffering. …”

“... How do we make it so that when someone is born with a chronic illness, someone who is going to be sick, who might always be sick, who might die sick, can still live a life that they are proud of?  How do we teach kids who are sick, teach people who are sick in general, to not feel ashamed of their illness or their experience of life, but to learn from it and to make something from it? ...”

As an advocate, I believe that is what our fundamental duty must be. To change the way society looks at sick people. To change the way we sick people look at ourselves. Everything we do as an advocate must be aimed towards creating a space for sick people to fulfill their potential. I hope I see the day when it becomes possible for every patient to self-advocate for themselves because that will be the day when every patient is empowered and every patient is no longer a “patient”, which originally meant “one who suffers”. 

Thank you for listening to me. 

P.S. Some of the readers might think that I’m painting a gloomy picture of the situation in India, but this is what I have gone through and many patients go through, and I felt it was necessary to portray the situation right as it is. My goal here is to bring attention to the inequitable situation present in India, and the fact that the lesser privileged section of the patient population in India has a much greater need for advocates than the privileged section of the patient population. 

P.P.S. I had initially titled this article - “Patient Advocacy in India”, and my first instinct was to just leave the article blank. Then, one day I was talking to a friend of mine. She’s a nurse and has IBD along with Asthma. I told her that I wanted to write an article about the state of advocacy in India and I asked for her thoughts on it. Her advice was - “leave it blank!”

My Therapy Journey

“Making mental health a priority in the puzzle of figuring out an IBD or any chronic illness diagnosis is vital to providing holistic health care to patients. ”

— Amy Weider

Having a chronic illness is so hard on the body. The constant pain or fear of pain can consume your life. For me, when I go to the gastro doctor the symptoms that have meant I am doing well are: are my bowel movements regular, can I keep food down and does my stomach feel okay. Through this journey it always felt like a piece of the puzzle was missing. When I was first diagnosed, I was always feeling sad, misunderstood and angsty. When I was going through my first flare ups I noticed I would become more sad and lonely than the usual sad and lonely. Dealing with a chronic illness and body pain is an isolating experience already and on top of it all processing the mental turmoil of diagnosis and life can feel unbearable.  

I first went to therapy when I was 13, three years after my Crohn’s diagnosis. Therapy can be a very overwhelming experience. It is expensive and insurance companies so often make it an even harder process to navigate. The healthcare system in the United States of America is blatantly set up to scare you away from being any sicker than you are and resources for finding mental healthcare can be scarce, especially if you do not live in a big city. Not to mention the societal disapproval of seeking help is so strong. 

After overcoming all these barriers to mental health care and my family hearing and understanding me after stating my need for mental support, my mother and I started the search for a therapist. We were new to this whole therapy thing and were on our own to figure it all out. We failed to acknowledge the many types of therapy and that the styles and process of therapy vary vastly. I have been through my fair share of therapists to say the least. It was hard enough to see one let alone find a therapist whose practices best uplifted my functionality. Especially living in a smaller town, it was hard to find someone who understood the trauma of being a young person with a chronic illness. Many times therapists would reinforce the adult disbelief of my sadness and hurt, an experience all too common with my other doctors. The trauma that comes with disbelief is off putting enough to avoid help. I did indeed find the right therapist for my young self and was able to stabilize my depression and grow comfort and knowledge from my experiences. 

As I grow older, I have much more complexity to my identity. So, it can be more complicated finding a therapist to support me in all my identities. Living in Chicago has helped open a door of resources that include free or sliding scale therapy and group therapy that allows me to work on my depression and anxiety everyday. I have recently found the right process for myself which takes the form of art therapy. It has taught me the ability to harness a practice. Creating something out of fabric is a way in which I am able to culminate anxiety or put importance elsewhere. Physical creation brings clarity to many life situations and it allows me to explore my pain through art. 

Reflecting back, I am so thankful to have parents that heard me when I said I needed help and support from a mental health professional. I needed help processing the bodily trauma that happened in such formative years in my life. Without therapy, there would have been no emphasis on my mental health at my GI doctor’s appointments because it was never addressed. I would have greatly benefited from a psychologist on staff at the gastro doctor or at least a referral after being diagnosed. Making mental health a priority in the puzzle of figuring out an IBD or any chronic illness diagnosis is vital to providing holistic health care to patients.

It's Not Just My Stomach

By Rachel Straining

It’s not just my stomach. 

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It’s the clumps of hair I had to watch fall out in the shower. It’s the fatigue that pulls you under like a crashing wave in the ocean and you have no other choice but to succumb to its current until you’re able to swim to shore. It’s the countless hours spent sitting in waiting rooms and on the cold, scratchy paper of an examination table. It’s being too afraid to eat that one food again, too afraid to go to that one place again, too afraid that it will happen all over again. It’s not just my stomach. 

It’s often just as much mental as it is physical. It’s often just as much whole body as it is, in my case, intestinal. 

I think that’s the thing that a lot of people don’t know about inflammatory bowel disease (IBD). I think that’s the thing that people without it will never know unless we say it - that it affects a lot more than just our “stomachs.”

It’s something that’s hard for others to understand because an invisible illness inherently brings with it invisible side effects that remain unseen. It’s something that’s hard to talk about because there’s this socially constructed stigma around it. That’s why I think that it’s something that we have to talk about, on our own terms, in whatever way we’re comfortable. 

Because the more we do, the more we can break that stigma for ourselves and for anyone else who is silently struggling and feels like they’re alone because no one else is talking about it. The more we make the invisible visible, the more we can gain back that power. The more we bring light to our darkest struggles, the more we can help guide others to see the moon. The more we illuminate the truth, the more we can live it.

Because the thing is, it’s not just our stomachs. And it’s time for people to know that.  

And yeah, there are days when I can put on a fire outfit and a hot red lipstick and stand tall in the face of everything that’s tried to tear me down. But that does not, and will never, take away from the reality of what I’ve gone through and what I’m going through. 

Even when others can’t see it, it’s not just our stomachs. 

It’s the fear of the future and the PTSD of the past. It’s current care and preventative care, needing to keep things under control now while simultaneously trying to make sure things don’t spiral out of control down the line. It’s attempting to gain control over something that can have a mind of its own. 

It’s trying to learn and relearn a body and a soul that are constantly changing, trying to learn and relearn how to live a life that’s continuously evolving with an additional layer of unpredictability. 

It’s knowing how much this disease affects different aspects of your life, but doing your best every day to not let it define your life - to not let it define you. It’s working to foster a kind of acceptance that on some days it just feels like it does. It’s working to foster a kind of belief that on days it feels like it defines your life, it doesn’t mean it will forever. 

Living with IBD brings with it different things for different people. But I think that, at its core, we can all agree that it’s not just our stomachs. We can all agree that everyone is going through something that others may know nothing about. We can all practice a little more empathy and implement a little more kindness because of it.

“The more illuminated the truth, the more we can live ours.”

Inflammatory Bowel Disease and Disability: What does it mean for me?

By Erin Ard

disability

[dis - uh - bil - i - tee]

lack of adequate power, strength, or physical or mental ability; incapacity;

a physical or mental handicap, especially one that prevents a person from living a full, normal life or from holding a gainful job;

anything that disables or puts one at a disadvantage.

Who knew that having Crohn’s disease or Ulcerative Colitis is actually covered as a disability? I sure didn't, up until a few years ago. I ended up doing some research out of curiosity to understand the relationship between "having inflammatory bowel disease" and "having a disability." By 9pm last night, I was pretty deep in the literature and found myself on the Social Security website. Then I read impairments.. Digestive System… inflammatory bowel disease… Hey! That's me!

But what does it mean to have a disability, even an invisible one? Let me dip my foot into the controversial pool for a bit here. Even though it is covered under Federal law, in my opinion, thinking of yourself with a disability is somewhat subjective. This is easy for the girl in remission to say, I know, but hear me out. We determine these labels (intellectual disability, ADHD, cerebral palsy, IBD) to help programs or governmental funding sources know who to serve. But if you ask someone with an intellectual disability whether they feel disabled, what do you think they will tell you? I learned recently that the ever-evolving language around disabilities isn't the bees-knees in forwarding equity and understanding in this community. Many individuals just want to be called by their first name, not by a label, no matter how inclusive the language might become. Thank you for coming to my TED Talk. *Takes foot out of controversial pool*

In this post I will investigate what it means to have a disability, what it means to have Crohn's disease or Ulcerative Colitis, and map out my road to understanding on how they overlap.

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A basic definition of disability is "a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions." Seemingly just big words, the coverage of this definition is forcibly broad and doesn't give much description of how it looks for someone with IBD. But, when you compare this definition to living with the symptoms of active IBD it starts to make sense. Coping with the symptoms of a flare-up can be extremely debilitating. It affects your body so harshly that it impairs your ability to perform basic daily functions, such as going to work, making dinner, picking up your child, or simply walking around your house.

Let's focus on IBD as a disability. Because Crohn's and Colitis are both oscillating diseases (meaning you can go from healthily in remission to active disease, and back again) this can get complicated. It's like saying you are a vegan one day and eating a cheeseburger the next. One day you have a label and the next you forget about it. In the context of IBD, you have a disability. And the next day you still have a disability but it doesn't disable you. Like I said, complicated.

Now you are probably thinking, "Alright Erin, I understand that IBD is a disability. What does this mean for me?" And I would counter with, "What do you want it to mean?" If you feel IBD is setting you back behind your peers, you should seek whatever help you need. There are a lot of programs established just for that reason! Do you need emotional support? Family counseling? Nutrition counseling? Long-term disability in the workplace? Whatever could be improved, reach out and find what works for your lifestyle. To illustrate, up until a few years ago, I realized that I couldn’t do it all by myself. It never occurred to me that reaching out for help was an option and I was being stubborn. I was so comfortable with where I was. All I needed to do was try a little harder… To my dismay, this strategy to face my own challenges didn’t work out so well. I still had trouble sitting through an exam and felt hopeless about my situation. It was this final breaking point that I saw the value of seeking outside help. I sought help from my school's disability resource center and was assigned an Access Consultant, who would back me up whenever I needed accommodations in the classroom. Even though my disease is in remission, there is always an unknown for what could happen, so I still use these accommodations as a resource.

It's still confusing because I definitely don't feel like I have a disability. This made me reluctant to seek help from the  disability resource center even though I knew I would have benefited. I felt dirty signing up for accommodations, like I was taking opportunity away from someone else, or that someone on the receiving end of my application would laugh and tell me to move on. And "I mean I don't really need them, do I? I can just figure it out on my own. It's no big deal.."

It is a big deal.

The word "disability" has it's place in the real-world, but it's ultimately up to you how to live by this label. Will it hold you back? Do you identify by it? Whatever the answer is, make it your own.

What do you think about the word disability? Or how has it’s classification as a disability shaped your ability to cope with the disease?

An Invisible Illness is Still an Illness

By Erin Dunne

Images from the "Suffering the Silence" web campaign that allowed people to publicly share their experience with chronic illness.

When I was younger, one summer my family was visiting my grandparent's lake house in Indiana. The water was low enough my cousins and I were able to walk out to the anchored raft off the edge of the deck without much swimming or with a life vest. On the way back to the deck I felt a sharp pain in my right foot and felt a piercing sensation with every step I took. My grandmother sat me on the deck to find I had stepped on a large shard of a broken bottle and it was lodged in the center of my foot. I remember bawling from the pain as she attempted to take the shard from my foot but after it was out, I only had a small bruise and a scar. The discomfort I felt in this moment was easily seen by my family members because of my expressions and they could physically see what was causing the pain- but it isn't always this easy with an invisible illness. For many people, without physically seeing the direct source of the pain, it is hard to believe that there is any pain at all. Not seeing the discomfort of an individual doesn't mean that they are not sick. It is not seen by the naked eye, so it is easy to assume that a person is healthy or "normal" when in reality, a person could be having a really bad flare day but "they look fine." Something can be seriously wrong inside of you that only you can feel.

“Just because you cannot see the pain another person is dealing with doesn't make it any less real.”

An Invisible Illness is a chronic condition that is not visible to an onlooker. Examples of invisible illnesses include: Digestive disorders, heart conditions, diabetes, lyme disease, mental illness, etc. The symptoms that are often associated with these illnesses can hinder ones ability to enjoy life and be involved in everyday activities they love- which can be very frustrating. Adjustments are often made to meet the needs of their new, often lower, energy levels and limited ability to move. While medication and treatment plans can help greatly with the physical symptoms, the mental game that can occur due to encounters with others, insecurities, and fighting one's own thoughts can contribute to the pain an individual is already in.

There are times where one may be interacting with others and it seems as though they are witnessing insensitive encounters and whispers from those around them. Comments are often made as to why they are often absent to class, work, and social events. Even comments on ones mood- why they are short tempered, withdrawn, or why they lay around so often (maybe even being referred to as lazy). "Laziness" to an invisible illness sufferer can be just as important as any medication or treatment they are taking to help their symptoms because it is helping their body recover from the havoc that is wreaking within. When explaining how they are feeling to others, it is common to be countered with the comment "but you look so good." Further fueling the idea that capability is based on the way a person looks. All of these small contributions can lead the individual with the illness to question themselves and often look down on their recovery. There have been times I have felt bad for having to cancel plans for being sick- I feel as though I let others down, or I have gotten mad at myself for not being well enough to go about daily activities. There are times I compare myself to others that are in good health and think of when I was able to do similar things but I become upset with the fact that I am unable to do those things currently. While it is easy to automatically go to these negative places, they truly don't help with recovery so what is the point? Focusing on so and so's good health won't make my symptoms any better so why am I wasting my energy on being jealous? It is best to focus on yourself and your needs in the current moment.

These illnesses can only be experienced and felt by the individual that has them- we can try to describe our discomfort to others but it is hardly ever satisfactory. Each day can look different for various people because each person has different degrees of productivity that is possible for them. For me, on a good day I am refreshed from a good nights sleep, am able to eat at every meal and even snack in between, get some form of exercise, and have concentration throughout the day that allows me to get tasks like errands and homework done. Other days I may only be able to do a fraction of these things and witness extreme brain fog that makes concentration close to impossible. There are times where I have multiple productive days in a row or I have low energy days that I often become frustrated with. One of the biggest lessons that I have learned through the years is to give myself grace on the days that I may not be able to get done what I had originally planned.

As I have mentioned before, I am a big advocate of listening to our bodies- it knows much quicker then us if it has been overworked and needs to recover. Giving yourself grace and being kind to your body is key with any invisible illness because we too cannot see what is physically causing us pain. Sometimes we do not even know of what event or substance caused the discomfort but we experience it. If you had things planned for the day and you wake up and don't feel as though you can complete everything, that is OKAY! Do what you think you can handle and be easy on yourself. Move as much as you can throughout the day, be gentle on your gut and nourish your body with foods that you know work best for you, and do something that makes you happy! You know yourself and your healing abilities better than anyone else so you must do what you can to honor your body in times where it may need more attention. It's okay if others do not completely understand or are able to empathize to the degree you wish they could, but it is important that they are as understanding and supportive as they can be. Although it may feel like it at times, there are others in similar situations that understand the isolation that comes with invisible illnesses. It is important to acknowledge that you are never alone in your journey, even in moments where it seems as though you are.

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People could say to those without invisible illnesses that they are lucky they don't have to deal with a disorder. And while I would never wish an illness on anybody, I don't necessarily agree that I am less lucky I have to live with an invisible illness. Are there some days I wish I had never been diagnosed with Crohn's Disease? Absolutely- but those are typically the days that I have become so fixed on the negative that I forget to acknowledge the positives that have come out of my diagnosis. There is always room for growth and I believe that having Crohn's has allowed me to grow remarkably into a person that empathizes for others, I wish to care for and help others because I understand the pain and loneliness that can be felt amidst illness, and I have been able to be a part of a wonderful IBD community. On a more personal level, I have found a love for cooking as I have had to alter my diet to fit my bodies needs, I am more in tune with my body and mind, I understand how to handle low energy/ mentally challenging days, and I give myself grace more than ever before. Yes there are times where it is very hard to handle the insecurity that others don't understand and may judge because they may think I am lying about my pain, but I know myself more than anyone and if I feel the pain, I know it is real- I don't need to validate that to anyone else.

There are many highs and lows of having an invisible illness but I think it is very important to try to find as many highs as possible to make the lows not seem as bad, but also to learn how to handle the low moments better. Life is happening for us, not to us and looking at these illnesses as opportunities for growth can help our perspective towards them remain as positive as possible.

Stay Lovely,

Erin D.