We've all experienced it, someone just has to say or do something that is inappropriate and even downright offensive to someone with conditions like ours. In such cases, it's all we can do to control our impulse to give a thorough tongue lashing or even a punch to the offensive person. Such insults are common etiquette, however most people don't have a real understanding of bowel diseases and all that's involved nor do most people seem to understand how their actions or words affect others, not that it's truly meant to be offensive or insulting - it's just a lack of knowledge and understanding.
|Photo Borrowed from Jezebel Article|
- We are much more sensitive to movement than those without such diseases.
While recovering from surgery, some church friends came to visit and their children decided to play in my wheelchair and repeatedly hit my hospital bed in the process. Not only was this annoying but also excruciating and nauseating! Or when someone bounces around next to you. I have to remind my husband to stop making so many movements as I become nauseated and the jostling also upsets my intestine - even just from someone walking heavily nearby me.
- Eating or drinking around us when we're not allowed to eat or drink is mere torture.
During most of my hospital stays, I wasn't allowed to eat or drink and it was torture watching and hearing visitors eating, drinking and talking about food/drink in my presence. I finally stopped allowing anyone to visit if they were going to eat/drink or talk about food/drink in front of me in my hospital room. I even had church member try to eat MY gift of cookies when I couldn't eat anything yet, and she tried to eat them in front of me! Thankfully one of my aunts was there to quickly snap her back into line.
- Commenting about our bathroom habits is extremely rude.
I just cringe when someone comments about my stomach rumblings, my frequent visits to a restroom, and especially if the topic of odor comes up - I just want to scream in a fit of rage and hide from embarassment. None of these things require commenting, so why are others compelled to call attention?? We are aware of our own bathroom visits, urges and about odor. We don't need help bringing more attention to our bowel diseases nor do we appreciate the attention. Keep such thoughts to yourself and please don't snicker or laugh at our problems.
- Denying or ignoring restroom access and needs.
A similar vein to this is when others ignore our requests and need for a restroom break. It is nerve racking when we don't have control over access to a restroom, whether it's worrying about a business denying us access, not knowing where a nearby restroom is, or those we're with driving or walking that don't want to take the time for us to use a restroom. When I was a child and had an ostomy I was riding with my aunt and uncle. I needed to use the restroom as my ostomy pouch was becoming too full. Although I repeatedly requested to stop at the next gas station for a restroom, my uncle refused to stop. My aunt made him stop finally after my ostomy appliance began leaking from becoming too full. Even to this day, I'm leary about riding with my aunt and uncle.
- "Advice" from non-professionals and others unfamiliar with our conditions.
I don't know how many times I've been given unwanted "advice" about my health by individuals who are not A) doctors, B) don't know my history or symptoms, and C) aren't familiar with my condition or similar conditions. Bowel disease isn't a simple condition nor does it have simple answers.
Recently I was advised that "If you took your B12 regularly then you wouldn't be anemic".
Really now?? Perhaps that's enough for some, but considering I took B12 regularly for nearly 15 years and never stopped being anemic I wouldn't say that B12 is enough to cure my anemia, regardless how often I take my B12. Nice try though.
Or perhaps when my mother was told that the reason I was so sick was because she didn't pray enough. Oh is that all it takes to cure someone?? Gee, we'll just give that a try then. Not to mention that my mother is a religious person and does her fair share of praying. And my parents will do anything they possibly can for my health and well being. Needless to say, this was a very wrong thing to say to someone - blaming a parent for their child's poor health or blaming an individual for their poor health.
- You don't look sick or that sick.
Illness isn't always blatantly visible. You can't see the internal battle my body is going through and I don't always show the pain I'm experiencing. I have a wheelchair and a handicap placard for when I have difficulty walking when my SBS flares up. As I discussed in SBS SOS, You can't see when my SBS flares up other than I walk funny, sit funny and am running to a restroom as quickly as I can and am doing so very frequently. I am often questioned, and rudely harassed, about my use of my wheelchair and my handicap placard. Yet, without these aids I am not able to leave my residence at times.
- Weight isn't such a light topic.
Chronic illness affects our weight drastically at times - from one extreme to the other. Most of us aren't at a good medium. Medications can cause weight gain and bowel disease flare ups affect our nourishment and often causes weight loss. At my lowest during bad health periods, I was at 87 pounds and some of my doctors considered me anorexic after my health started to stabilize. Not only was I not able to eat for the most part of a year from repeated procedures and surgeries, my stomach shrank from not being allowed to eat and when I could eat, I was losing most of my nutrients. In the 6th grade I was placed on a diet to gain weight. After the weight gain I was still only at 100 pounds until my junior year in high school. It was only at this time that I was able to gain anymore weight because I was placed on TPN as I wasn't allowed to eat due to a hole in my intestine, which is explained in more detail in A Look Back. Since that time, my weight has been up and down as my metabolism and appetite has been altered. I'm at a healthy weight now, although I would like to lose a few pounds. Regardless what my weight is curently or what it has been in the past, there is never been a short supply of comments by others about my weight - whether about being too skinny or too heavy.
- You were fine earlier.
Bowel disease isn't constant. We have good days and bad days and sometimes it changes during the same day. We are deeply affected by food and even a specific diet isn't a cure all. Some foods may make us sick one time and not another. The Evils of Food depicts some of the considerations I have to make every time I eat something. This greatly affects the ability to participate in activities. There are a lot of times that I think I'll be able to do an activity and when the time approaches, I'm just not able to participate. Our energy, sleep, mobility, and mood are affected by our conditions. Most of us are continuously battling malnourishment which affects all these areas.
So what would be appropriate????
- Just supporting us and being there for us.
- Please don't make any negative comments or bring attention to our needs to embarras us.
- Ask if there's anything that would be helpful.
- Please don't hold it against us when we're not able to do something.
- Feel free to ask questions to better understand our condition and what we're experiencing.
We appreciate the concern and care of our loved ones and are thankful to have you in our lives.