Talking about Bad Bellies

Lately I have been reflecting quite a bit on the different ways that people talk about and respond to chronic disease, and in particular in my experiences with IBD and IBS. In my experience, I have found that there is a relatively low level of understanding and awareness about these diseases among the general public. For example, many people confuse my fructose malabsorption with an allergy. (This quiz is a good way to clarify the differences if you are unsure yourself, or just to test your own knowledge).

Additionally, because IBD and IBS often involve “toilet issues,” which are generally seen as things you don’t discuss in public, I have found that there is often a mixture of embarrassment, disgust, shock and pity when I talk to others about what I am going through.

This week, I thought I would therefore write about the range of experiences I have had with this, and share a bit more about my individual symptoms.

MY SYMPTOMS

As discussed in previous posts (like this one, or this one), my symptoms often seem to be due to a combination of my IBD and IBS. This can sometimes mean that within a few hours, I can have several different things happening in my belly. Here is a quick summary of my main symptoms:

Bloating – This often happens when I have eaten foods with high fructans content, such as bread.

Flatulence – This happens regularly most days, and is worst after eating foods high in fructose or too much dairy. It is also quite common for me to have a lot of gas in the mornings, which I believe are due to a combination of my FM and UC.

Stomach pain – This also mainly after eating foods with high fructans content, and can also sometimes happen when I am hungry, which I believe is due to my UC.

Abdominal cramps – This seems to be more of a symptom of my UC, and often occurs with constipation.

Acid reflux – This usually occurs after eating foods with high fructose content, such as apple and onion.

Alternating constipation and diarrhoea (IBS-A) – This seems to depend on what I have eaten during the day, as well as my stress levels and hormonal changes (such as during my period).

Difficulty with sleeping – This is usually worse after eating too many problem foods during the day.

SUFFERING IN SILENCE

In my opinion, one of the biggest barriers for understanding IBS and IBD is the negative stigma around them. I have experienced having people tell me that it is “too much information” when I talk about my symptoms, or that I am “causing too much trouble” and just “making excuses” when I mention my dietary requirements. Up until recently, I was often embarrassed about my symptoms, and did everything I could to hide them because of these kinds of attitudes. I wouldn’t speak up when I was in pain, even when I could hardly stand, would never break wind in front of my boyfriend, even in private, and was hesitant to tell people about my dietary requirements when going out to eat, even if they asked. 

It seems to me that this is a common way for most sufferers of IBS and IBD to deal with their illness, and I think this is why many people have been shocked when I have told them about my illnesses for the first time. Because of this, I can relate to articles such as this one, which highlights things people say that can be hurtful when they don’t understand what you are going through, such as “You don’t look sick.” In a lot of ways, because most people don’t understand them, it seems that diseases like IBD and IBS are taken for granted, and aren’t seen as being “that serious.”

EMBRACING MY ILLNESS

To help change my own perception of my illnesses, I have recently joined some support groups via social media, and I have been pleasantly surprised by the support and positivity in these groups. I has been heartening to find that there are thousands of people out there with similar symptoms and experiences to my own, and who are looking for answers to similar questions. Through these groups, I have finally felt a sense of solidarity, and of community.

Through these groups, I have also heard about people like Bethany Townsend, followed by Daniel Searle, and others, who are defying social stigma and no longer hiding their colostomy bags – showing they are not ashamed of their condition. Although I am fortunate to not need a colostomy bag at the moment, I have still been able to relate to these people, and they have inspired me to be more accepting of my own conditions. This is also a great article, as it talks about embracing your illness as part of you. I would like to be able to reach this point with my conditions as well.

Have you had similar experiences when talking about your illness, or do you have inspirational stories to share? Please comment below.