Many otherwise intelligent individuals have the rather insensitive view that Crohn’s Disease is simply a nice medical term for an illness that people have because they lack self-control. To them, everyone has bowel troubles, some more than others, and that all it takes is watching what one eats and drinks in order to have a normal intestinal operation. They also become frustrated with Crohn’s sufferers, thinking that they exaggerate their symptoms and just need to take a few antacids or anti-diarrhea pills.
Crohn’s is classified as an autoimmune disease, in which the body is actually producing antibodies that act against itself, much like the more commonly known Lupus.
Just getting the fact out that it really is a serious disease and not just a “condition” is truly important because misinformation makes it hard to develop empathy for a friend or partner with this disease. That said, here are 15 things that Crohn’s sufferers will endure that require understanding, patience, and support.
1. They can’t participate in a lot of sports and other social activities as young people
Imagine you are a 16-year old girl who would love to go out with her friends for the evening. Maybe they want to drive around, stop at a few other friends’ homes, and stop at a fast-food place for burgers and fries. For the teen with Crohn’s, this means not eating all day in order to avoid embarrassing diarrhea accidents, and certainly not participating in the fast-food stop.
Suppose you are a teen boy wearing an excretion bag – how do you shower with your classmates after PE class? Parents and other adults need to be happy to make comforting accommodations for these teens, and that includes the PE teacher-jock who may not have a tendency for a lot of empathy. Wise parents have meetings with school personnel and make certain that all reasonable accommodations have been made, including a quick exit from class without permission.
2. They can’t consume alcohol
So, when everyone is having a grand time at happy hour and putting pressure for the Crohn’s sufferer to have a beer, they wonder why they won’t drink. Are they anti-social; are they a recovering alcoholic? A sufferer with a pretty solid self-image may be able to explain the disease a bit. Good friends and partners understand and make an extra effort to make the sufferer feel comfortable, even in an environment of drinking.
3. They get depressed because the disease seems to control so much of their daily lives
As Bethany Townsend, famous model and make-up artist claims, she left her career for years because of her “bag” and only recently was able to put on a bikini and post it on Facebook with the support and encouragement of her husband. Because of the overwhelming support she then received from Facebook fans she is back modeling and over her depression.
Most of Crohn’s sufferers do not give up public and promising careers, but they do have periods of depression. Making an effort to really understand how the simple things you take for granted can be big hurdles for your loved one will go a long way.
4. They skip meals in order to avoid having to go to the bathroom
Weight is a rather sensitive topic for people with Chrohn’s. Oftentimes it’s easier for them to say they’ve been sticking to some brand new diet plan for weight loss than admitting they don’t want to have lunch with you because they might afterward get stuck in the bathroom for hours. Skipping meals is one big concern for medical professionals dealing with Crohn’s patients because the potential for severe weight loss and even anemia are always present.
A current study involving 3700 patients from over 40 countries is underway to research the efficacy of some new medications that will reduce the levels of the culprit antibodies and thus the onset of acute and severe diarrhea is currently underway and does show some promise.
5. They can suffer embarrassingly severe diarrhea, especially in public places
They have to look for the nearest restroom when they are out, and this can be irritating to social acquaintances and partners who just don’t have the empathy they should. Being seated in a restaurant for the Crohn’s sufferer is a “huge” consideration, and others need to be supportive and kind about it, even if it means a bit longer wait for a table.
6. Being overly tired is a symptom of the disease, not an “avoidance” tactic as some have decided to believe
Normal daily activities of school and work can be exhausting, and this is a real physical symptom. Friends, family members, and partners need to cease complaining or showing irritation when the individual needs a nap or simply does not have the energy to engage in physically-demanding activities after a long day. Plan those activities on weekends when there are no other physical and mental demands on the sufferer.
7. They cannot have the social lives that others do
Teens avoid sleepovers, swim parties, and overnight trips with friends; adults may avoid such things as camping trips or picnics and barbeques, or adventurous trips to faraway lands where restrooms might not be immediately available.
8. They carry extra toilet paper, wear “Depends,” and always have an extra set of clothing with them
Again, that’s something they are really embarrassed to admit. Understanding these behaviors is critical for friends and partners who truly want to make life as comfortable as possible for a Crohn’s sufferer. Instead of showing irritation because a road trip may involve more than the average number of restroom stops along the way, the empathetic fellow traveler will take it all in stride, be cheerful and accommodating. Should an accident occur, it is important to know whether the “victim” wants help or wants to deal with the problem on his/her own.
9. They are self-conscious about the clothing they wear so that bags don’t show
If you love this person, make extra efforts to complement their dress and appearance.
10. They don’t sleep well
There is discomfort a lot of the time, and this is not an exaggeration. Think of times when you have a bad bout of stomach gas with cramps and diarrhea. People with Crohn’s have to deal with this most of the time, even in the middle of the night. Stop complaining about being awakened, and give them a reassuring hug instead. Here are more tips about getting a night of better sleep if you have Crohn’s.
11. They avoid going out to eat
This can be a “bummer” when friends who are couples invite you to go out to dinner. If your loved one’s symptoms are acute, this is not going to be an option. If they are not acute, and the outing is planned, be certain that the restaurant chosen has mild foods that your loved can tolerate more easily. Several studies currently being conducted by the Crohn’s and Colitis Foundation are attempting to develop means by which normal microbe activity can be stimulated in the gastrointestinal tract that may ultimately allow those with the disease eat more normally. This would be a huge breakthrough!
12. They plan when they will eat certain foods because they know how they will be affected and will need to be physically in a “safe” place
Don’t try to “force” your loved one to eat anything or anywhere if they are not truly comfortable with the food and/or the environment. You certainly don’t have to change your eating habits because of their disease, but neither should they ever have to change theirs to please yours. Certainly there a lot of great foods both for you and your loved one to digest normally.
13. Airline bookings may seem like a minor deal to you, but to the Crohn’s sufferer, they are not
Be mindful that seating has to be close to the bathroom, and, if there is an accident because the bathroom is occupied at a moment of crisis, be reassuring and comforting. They are embarrassed enough without your expression of embarrassment too.
14. They understand that there is no cure and that researchers are looking at multiple causes
Those include but not limited to genetics, previous infections, immune system failures, and environmental factors such as junk food and too many antibiotics earlier in life. Understand that they are keeping apprised of any research that is ongoing and any new promising treatments and that they will certainly take it up with their doctor. Instead of resenting, the time spent on reading up on these potential treatments and the conversation that they may want to have about them, be a good listener, be encouraging and be positive.
15. They have fears that may seem abnormal to you
Just walking the dog can cause anxiety, if the walk will be pretty long; they fear that they may embarrass themselves or you. Imagine the anxiety of going to your boss’s home for dinner or a barbeque; imagine the anxiety of going to a child’s soccer or basketball game, sitting up in the stands and not being able to get down through the crowd to reach a restroom in time. You have to validate these fears and be willing to compromise. You can’t truly understand the fears because you don’t have the disease, but you must be willing to validate them with both words and behaviors.