Hidden Disabilities: Irritable Bowel Syndrome (IBS)

This post is part of a new series on Time Scavengers about Hidden Disabilities and how these affect us during graduate school, throughout our careers, and in the field and lab.  We welcome contributions from our community, friends, and colleagues to this impactful series.


Please welcome Ranjeev, a guest blogger here at Time Scavengers (click here to read more about Ranjeev and his research on our Meet the Scientist blog)!

What is it really like to be me

Imagine you are perfectly “normal” (a term that is used by “society” to refer to people that conform to the accepted morphological, physiological and/or behavioral norms) on the outside but on the inside, it is a whole different story, a complete nightmare where you are trapped inside a body constantly working under a “battery saving mode”: unable to stick to a schedule; living constantly stressed and anxious unsure of how the day is going to be or at work in pain and in mental distress so much so that you are unable to concentrate on anything but you make a conscious effort to keep a “poker face” so that you don’t worry your peers. Can you imagine? If so, welcome to my world. Hi! My name is Ranjeev, I am a PhD student and I suffer from several hidden disabilities including Irritable Bowel Syndrome (IBS), a complicated chronic illness of the gut, which troubles me the most and is the basis of this writing. I should send out an early warning to the readers as this post is ironically written from the gut. Thus, if bowel movements are not your cup of tea, this is definitely not something you should proceed reading.

I have had IBS probably all my life, but recently, flare-ups have been more frequent and prolonged making my life interesting and challenging. Having said that, life is not always going downhill. There are good times and times that we are able to persevere through pain and discomfort. With IBS and several other hidden illnesses, I have accomplished a fair bit in my professional and personal life. I have been employed as a Probationary Lecturer (Junior Faculty), a teaching assistant and research assistant; completed a Bachelors and a Master’s degree, topping the batch in both; published and presented research, and I am about to start the third year of my PhD program. This post is not meant to provide any medical advice or by no means a success story. The content provided below are purely based on my own experiences and I’m well-aware that my methods of coping are not perfect. The objective of this post is to share my journey in the hopes that there will be bits and pieces that are relatable and helpful, and to create awareness about hidden disabilities within academia.

A hidden disability is basically a disability that is not visible on the outside. IBS, in my opinion, is indeed not apparent to the outside world at first, but there are many indications that clearly suggest that there is something wrong. With IBS, there are many possible symptoms which vary from person to person. Commonly there will be food intolerances, altered bowel habits, nausea, cramping, stomach pain, etc. The part that would be most apparent to the outside are behavioral changes like being always late or taking excessive leave from work, lack of energy, not participating in social gatherings, isolating yourself, and periodic weight loss. What triggers IBS flare-ups? Well, it could be anything from stress to what we eat and drink or in my case, trivial variables like what toothpaste I use or changes in the weather. Basically, I recognize the controllables (i.e. eating the right food in appropriate portions), moderate controllables (i.e. minor stress levels) and the uncontrollables (severe stress, weather, etc.). These are indeed interrelated and typically follow a cyclic pattern.

IBS and Grad School

The first point I would like to highlight is that success in grad school, in my opinion, is not maintaining a perfect 4.0 GPA or publishing like a printing press. Rather, it’s doing your best and enjoying what you do. Grad school can often be a challenging if we mix up these two, and thus provide the easiest source of triggers for IBS and associated mental health woes.  As a graduate student, IBS offers some unique challenges to me. When I first stated grad school in 2015, I would always be late for the morning classes. It is no secret that people with IBS have a hard time getting out of their homes, because our bowels have a mind of their own and the phrase “trust your gut” does not work with us. Although I had already discussed with my advisor about my issues, I was initially reluctant to say why I was late for my classes. Obviously, no one likes to talk about the things that leave your body, nor would anyone want to listen to something like that. This is, in a way, a result of how most of us are brought up by society where we elaborate on all its glory on the food we eat but not on the excretory processes, which makes it so much harder for people having health issues to communicate or seek support. Subsequently, it came to a point where my professors thought I was being disrespectful, and I then let everything out. My professors were very understanding and supportive.  Since then, even after moving to a new college, I have communicated with all my professors about my IBS and the possibility of me missing, showing up late or leaving class early. I assured them that my absence does not mean that I will be taking things easy. Actually, it meant more work on my part because I would have to go through material on my own and possibly end up reading a lot more reference articles.

However, by communicating with my professors, what happened was almost a miracle. My anxiety and stress levels dropped, and my GI was more manageable. I performed well in classes, got my teaching and grading done efficiently and my research was going well. But there are always potholes on the road. For me, flare-ups tend to occur close to finals and when I get work piled up. The best way I would address these is have a regular schedule and place deadlines on myself, making sure I am on top of things. In doing so, my week is pre-structured, and I would get things done more effectively. Additionally, one piece of medical advice I got was to stick to a daily behavioral pattern, i.e. waking up, ablutions, eating and going to bed consistently at the same time each day. However, we all know that this is not always possible.  At an extreme end, we have all pulled all-nighters. They are indeed helpful but there should be limit where the benefit of getting work done is offset by the lack of awareness, the inability to concentrate and your bodily functions thrown out of whack.

Maintaining this balance is highly subjective and you should never compare your peers’ functional patterns and capabilities with yours. When I feel that my anxiety is getting out of hand because of exams or any other college related issue, I often have a pep talk with my GI and my head because they have a tendency to plot things together. Remember, your best is all you can do, so don’t over think, just do it, do it in the best possible way under the given circumstances! We often spend a lot more time (over)thinking about a task rather than the time we spend on actually doing it. This is more prevalent among people with hidden chronic illnesses because (A) our illness is not visible, and (B) we have to always be prepared and have alternatives ready just in case things go pear shaped. But in reality, “doing” is the easy part and thinking too much is what over-complicates things leading to panic attacks and flare-ups, but anxiety is part and parcel of chronic illnesses and needs to be managed with or without help.

Grad school is undoubtedly an eventful period in our lives. Professional gatherings like conferences provide excellent opportunities to learn and talk cool science, meet your favorite researchers, present your work and get insights on improvements, share your ideas with the community and, importantly, de-stress. Personally, I find such meetings and networking challenging.  For me the thought of leaving my comfort zone brings in a lot of anxiety which can turn into a bad flare-up. So, what do I do? I prepare myself in several ways.

Taking Care of the Controllables

  1. If this is my first time going to a specific meeting, the first thing I do is talk with my advisor and discuss our expectations and ask for any advice. This I find to be very important because my advisor obviously has been to similar conferences and has great insight and tips for successful participation, which in turn can reduce a lot of the anxiety caused by the unknowns. Once you have been to one such meeting, your confidence is often boosted, and you will experience less anxiety in the future.
  2. Preparing your meals and medication: If I am traveling outside, I would make sure to have my “safe foods” packed and ready. But this is not always feasible. You really can’t carry one weeks’ worth of food to a conference in a different state. Thus, I would do a thorough web search on restaurants that would cater food that agrees with me. Most professional meetings also provide food and inquire about food restrictions from their participants. I would also have medication sorted in a travel friendly arrangement because you never know when they can come in handy.
  3. It’s no secret that IBS sufferers frequent restrooms more regularly. Thus, I would have a good idea about locations of restrooms. There are a number of apps now available to find the nearest restroom (check out a list of a few of these apps here).
  4. One of the biggest mistakes that I do is eat less prior to travel or presentations. Believe me it’s a bad idea. I recommend having your regular meals and patterns rather than confusing the already sensitive digestive tract.
  5. Anyone in academia, however senior they might be, have had butterflies in their stomach at some point in their professional career. However, in IBS sufferers this benign and innocent form can change into fire breathing dragons simply by hitting the panic attack button. The method I follow to avoid panic attacks is trying to focus my attention on something totally different. If by any chance, you hit the button, I try to be mindful that what I’m imagining, often the worst-case scenario imaginable, was created in my head and communicated to the stomach. In reality, it’s just a false alarm because you have followed all necessary dietary precautions and there is no real reason for you to become sick. If this fails, I would calm myself by talking with a friend, getting some fresh air or by just going to the restroom. The interesting thing is that once you get into your presentation or meeting, your butterflies and dragons calm down and go back to sleep like magic.

Moderate Controllables and Uncontrollables

The best comforts you have as an academic who suffers from a hidden disability is your family, advisor, and peers. I am blessed with a wonderful and caring family, advisor and friends who understands my limitations and needs and help me in every way possible.  The fact that I don’t have to hide anything about my disability reduces the anxiety and gives me assurance and comfort that I have support  I can rely on.

Often times however, the anxiety and IBS are at levels that you cannot deal with yourself. This is a good time to make use of the mental health resources offered by your university, which in most cases are actually free of charge or part of your school fee. I have had several appointments and had excellent results from my sessions. You should freely talk about your concerns however crazy you may think they are. In all honesty, you are not the only one imagining such scenarios and in my experience the professionals have heard almost every story possible. I cannot stress this enough, there is no shame in getting help for mental health. It does not by any means make you inferior nor should be subject to be ridiculed or be judged. Actually, once you have had some good sessions, you are more likely to be mentally capable to face challenges better under stressful situations than others.

Fieldwork and IBS

Can someone with IBS become a paleontologist? Yes! Paleontology is often seen as a highly field based discipline. This is not exactly accurate. There are many aspects of paleontology that you can do “indoors”. Some examples include database associated analytical work and research on museum samples. I started out as a field-based paleontologist but at present my research is mainly lab-based due to my IBS. However, one should remember that one type is not inferior over the other. When doing field work, I would follow the same procedures mentioned earlier. It is always a good idea to be prepared well in advance and one thing that I experienced is that once I’m in the field, I forget my gut completely. But sometimes, you come to the realization of your limits. This should not be seen as a blow, but rather an opportunity to prospect for novel opportunities brought up as a result of your health. Quoting my advisor “you can do more to your field of research by taking good care of yourself”. Thus, self-care is good for both you and your field of research.

Supporting People with IBS

I do agree that it is hard at first, to understand how the minds and bodies of people with hidden disabilities work. And inadvertently, through no malicious intent at all, you are bound to say something that will make us uncomfortable. In such an instance, we are never angry but are put into a place where we are unable to provide a “sane” response. In a nutshell for most IBS sufferers, almost all conscious decisions we make, how trivial they might be, goes across our guts before it’s put into action. So the productivity or simply the ability to do something often rely on the stability of our guts. The best way to help someone with IBS or any other hidden disability is to be knowledgeable about the condition, know the limitations and remember that you are not there to cure but to give support.

De-stressing and managing anxiety are important components of managing IBS. However, people often mistake and sometimes irritate us by saying “oh! it’s all in your head”. There is a definite connection with your head, but it is never the sole reason. The only way that can happen is doodled below.

For Others with IBS

There are number of ways I de-stress. Taking frequent short breaks; talking with my friends; walking around campus; listening to music, etc. In the new age of technology, we can be connected to people with IBS on the other side of the globe with a simple click of a key or a swipe. Social media I find to be a very comforting source to vent and to seek support from fellow “warriors”. I use social media platforms like Facebook, Instagram and Twitter to share my story, provide support to anyone in need and doodle funny memes about my condition. The latter not only to de-stress but also can be used to create awareness among the general audience and within academia. However, this should be done in a conscientious way such that you are laughing together than laughing at someone! The online community in my experience has been extremely supportive because they understand and can relate to what you are feeling. Not only do you get a chance to meet people, you can have the chance to inspire and be inspired by the struggles shared. However, NEVER compare your health condition with that of another. This is a big NO NO because you will inadvertently neglect self-care because someone else has it much worse!

Another point I would like to remind my fellow “warriors” is not to indulge and always be mindful about your food intake. Often times, I would CONSCIOUSLY consume a trigger food (e.g. ice cream) well aware of its consequences. This is often the case when either I’m stressed to a point that I don’t care and/or to celebrate a personal achievement (treating yourself) or in lieu of a long holiday. The justification of the latter two is I will enjoy this now and suffer later. But when you suffer, you not only go down into a mental low but also lose a lot of productivity because you may need a substantial recovery time. So my advice is not to let your five senses override your mental calmness and misdirect you to indulge in trigger foods/drinks. Having a lot of food intolerances, it is important to check with your healthcare team if you require supplements and/or figure out a good diet plan. Without the proper nutrition, it is obvious your productivity will be low.

In this post, I intentionally avoided discussing how our personal lives and interactions (with spouse/partner/family etc.) are affected by hidden disabilities. Your close family is definitely the best source of comfort, help and support in your academic life. But this would be a whole different topic. But I do want to highlight an important point which is often not talked about at all. Typically, we the hidden disability bearers receive the most care and support from the outside world. But our immediate families also go through almost the same level of trauma and we should be mindful to do our best to limit the stress and provide them with as much comfort and support as possible. Typically, mental health and other forms of support available to you are also available to your spouse and /or immediate family members. Be aware of them and make use of these resources.

In sum, I would like to conclude by suggesting you all to share your story to inspire, to let others know that they are not alone, share tips and tricks that worked for you and share your story to create awareness and de-stigmatize! Personally, as someone with a hidden disability, there is no greater pleasure than reading someone else’s story about how they overcame their adversities.

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