Guest Post for IBS Awareness Month: Making Sense of Unsupportive Family and Friends and Finding Supportive Others
IBS Impact welcomes a guest poster this week. Megan S. lives in the United States with her husband. She is currently a PhD candidate in sociology and working towards the completion of her dissertation. When not focused on her research, teaching college courses, or finding camaraderie in the IBS Support (Official) Facebook group, she enjoys cooking with her husband, and camping and hiking with him and their energetic pet dog. She wrote this post especially for IBS Impact. We thank her for her time, effort, and candid, helpful perspectives.
Read a recent post by Megan’s husband here.
In many ways, I wish this blogpost was uncalled for. Unfortunately, many of us have experienced unsupportive, judgmental family and friends, who sometimes even blame us for, or don’t believe in, our diagnosis. This post tries to make sense of and explore some of the reasons why this might be, as I also share about my family’s slow “coming round” to accepting my IBS and demonstrating empathy. Through practicing our own empathy, we might find patience as we wait for our loved ones to process their own emotions about our IBS, and I propose other resources and networks while we wait for these individuals to (hopefully) come round to being supportive.
It began with the live action Beauty and the Beast movie and a side salad, or so I thought. After grabbing dinner, my friend and I went to the movies. There, my stomach turned and grumbled, and it dawned on me: I could not make it through the movie. I waited for what seemed like a lull and went for it. Thank goodness the restroom speakers piped in the soundtrack of the movie as my explosive diarrhea created its own. Too bad we were not watching a more explosive movie; Transformers would have done the trick.
Although the insoluble fiber in lettuce is something I cannot handle, removing lettuce did not resolve all my woes. Next it was spice, then, incorrectly, nightshades, and probably a few more along the way that I’ve since forgotten. An acquaintance of mine, who I knew from college and often socialized with through mutual friends, was diagnosed with this “IBS,” and I stood in resolute denial that such a thing could be plaguing me. Next, my doctor mentioned that my symptoms sounded like IBS, but again, denial can be a determined beast.
As my symptoms escalated over the next few years, I found myself having more bad days than good. I could hardly remember what a “normal” bowel movement was. Pain became my companion. I was exhausted, sometimes spending several days on the couch, in pain and afraid to eat. Somewhere in this low point of mine I had a not-so-bad day and ran into this acquaintance with the IBS at a social gathering. As I griped to him, he told me about some “FODMAP diet,” and something called “Monash.”
That moment serves as the page turner in my story. I transitioned from embracing denial to embracing knowledge about the condition, and perhaps recognizing that I have IBS. (I totally have IBS.) Over the course of a year, I found great success with the low FODMAP diet. From there, I benefited from gut directed hypnotherapy and enteric coated peppermint pills. Two years later, I am still tweaking my diet and experimenting with scientifically proven symptom management options, now empowered by knowledge as opposed to burdened with denial.
However, this transition was not met with support by everyone I held near and dear. IBS is still incorrectly considered by many “that condition” that really means doctors simply do not know what is truly “wrong” with you. (For a great discussion on social stigma and chronic illness, check out this 2013 guest post for IBS Impact by Dr. Tiffany Taft, Psy.D., a GI health psychologist and leading researcher on this very topic.) Upon telling my father I had IBS, he told me that he never had any issues like this, and that clearly, I did not get this condition from him. His words stung. I questioned if he believed me. In reality, he was processing his own guilt and sorrow; many parents feel this way when their children suffer from chronic conditions.
In planning a group trip, a friend of mine stated that they no longer wanted to hear about “my poop problems,” overwhelmed with my adamant demand that I need access to a means of making my own food. A week of eating in restaurants would destroy me with my extreme sensitivity to FODMAPs.
An extended family member, exasperated with my ever-changing dietary restrictions as I worked with a FODMAP trained dietician, irritably stated, “Just tell me the list of what you can and can’t have once you figure this out,” and walked off. This comment, in addition to so many others, hurt. I felt invalidated and that others perceived me as simply being difficult or needy, wanting to be the center of attention perhaps. No one saw the pain I experienced afterwards, at home the next day, curled up on my couch. Most of all, these statements made me feel unwanted. In reality, everyone else was just struggling to make sense of my IBS and how it altered the ways I was able to interact and spend time with them.
There is a wonderful theoretical piece by Peggy A. Thoits, a leading researcher on life course theory. For those with chronic conditions, there tend to be two groups of supporters: primary and secondary (2011). Primary group members are oftentimes spouses, family, and close friends, whereas secondary group members are more distanced, such as coworkers or acquaintances. Oftentimes, the random coworker who steps up as a secondary group supporter has something in common with the individual, in our case, perhaps sharing in IBS or another chronic condition.
Although primary group members are a crucial support system, “primary group members are typically upset about the individual’s situation themselves, even more so if it creates serious disruptions in their own lives. They are invested in the problem being resolved as quickly as possible to alleviate their own and their loved one’s distress. Invested supporters therefore may minimize the threatening aspects of the problem, insist on maintaining a positive outlook, or pressure the person to recover or problem solve before he or she is ready” (Thoits 2011:153).
Thoits’ observations might resonate with many of us here. Although our loved ones support us, sometimes their methods might offend and hurt, invalidate, and frustrate us. They might wish for a cure when there is none. Much of this boils down to their need to emotionally process this significant change in our lives and theirs. I witnessed this myself when my own primary supporters demonstrated their own emotional strain and stress, lack of empathy, and their requests for a simple food list which is oftentimes impossible to provide with IBS. Of course, not every primary group member will feel this way; some will be incredibly supportive, while others will falter.
My largest takeaway is to give these individuals time. Recently, I decided to be more open about my pain, symptoms, and experience with IBS, compared to discussing IBS in a distanced and informative way. When my father called to talk during a recent flare, I informed him that I was feeling tired, in pain, and toilet bound. Over the next few days, he checked in on me, asking how I was feeling and if I was on the mend. It was the first time he outwardly demonstrated compassion towards me regarding my IBS. This is a major change from his declaration of him not having these types of issues.
We live in a very solution focused society, especially those of us in westernized societies, which is why it is unsurprising that family members will oftentimes bombard us with incorrect advice. Oftentimes these individuals are doing their best to help, even if disastrously so. When this happens, I have found it best to give them a specific way that they can help. Several family members of mine constantly offered incorrect dietary advice, such as cutting gluten or preservatives. They often became frustrated when I turned their “advice” down. Below their advice was their own emotional processing. These individuals express love through food. Suddenly, my IBS was a direct challenge to their expression of love. Once this dawned on me, I was able to provide some safe recipes for them to make. It began with just one and over time we’ve built a small list so that they may express their love in the way they know best.
Of course, this comes with some caveats. There are primary group members whom you might lose or grow distant with. Some of my friendships have not lasted the way I had hoped. Perhaps some of these individuals will eventually come round. It took me until 2020 to really begin the low FODMAP diet; live action Beauty and the Beast came out in 2017! It took me three years to accept what was going on with my body, even though I was the one in pain and performing the daily diarrhea soundtrack. In comparison, my father taking two years from my diagnosis to come around might even be considered reasonable.
While I waited, and in some cases continue to wait, for my loved ones to process their emotions regarding my IBS diagnosis, I was fortunate to find supportive “others” elsewhere, in those Thoits calls “secondary group members.” These are individuals whose “knowledge about one another is less personal… work, voluntary, and religious organizations are examples of secondary groups” (Thoits 2011:146). Of course, not every coworker or acquaintance will be supportive. However, Thoits posits that “similar others,” in other words, secondary group individuals who have similar experiences, such as their own chronic conditions, can provide a wonderful resource. “Having ‘been there’ themselves, similar others can tolerate expressions of distress and validate the normalcy of the person’s emotional reactions and worries, rather than deny, criticize, or attempt to change them because they are upsetting or threatening to hear” which may be true for primary group members (Thoits 2011:154). Simply put, their similar experiences allow these individuals empathy, and their emotional distance means they are not personally impacted.
Recall that acquaintance? He was a secondary supporter who has since become a great friend. We share poop stories, discuss food options, and more. Never underestimate the value of a good poop story. At first, he was the sole informant, providing me with incredible resources. Since then, I have also empowered myself with knowledge and have been able to return the favor by informing him about additional resources. More importantly, we can speak in IBS terms; we understand this experience. Lastly, did I mention that we can relate with a good poop story?
My takeaway about secondary group members is that if you don’t have any, find some! I was fortunate to have an acquaintance who was already diagnosed; however, he was not my only secondary contact. I’ve become closer with a colleague who has celiac, and various others who have GI disorders. Beyond these individuals, I also found an IBS support group on Facebook which I have benefited greatly from. Most days I spend some time answering questions or providing advice that aligns with the most recent scientific understandings about IBS. I have a sense of both purpose and community as I help others in this virtual space.
In short, IBS is a cruel condition, not merely because of the wretched symptoms, but also in the ways it can disrupt our quality of life and impact the lives of others we cherish most. Some of these individuals will handle your IBS incredibly well. I am fortunate to say that my spouse has been one of these impressive primary supporters. Others will need time to process. Be patient. Some, unfortunately, may never come round. Regardless of how much, or lack of, support you receive from these loved ones, consider finding secondary group supporters, whether it be through a Facebook group, engaging with blogs such as these, support groups in your local community, or that unexpected coworker. Finding others who relate can be endlessly valuable as we wait for loved ones to come round.
Thoits, Peggy A. 2011. “Mechanisms Linking Social Ties and Support to Physical and Mental Health.” Journal of Health and Social Behavior 52(2):145-61.