The following guide covers Crohn’s Disease Realities you should be aware of.
Even though talk about Crohn’s Disease seems to be on the rise, there are many misconceptions about the disease, stemming from misinformation, and assumptions from those who have never experienced it firsthand.
Most people mean well, when they offer up information or try to help someone who is battling a chronic illness. But, if you are not armed with adequate and correct information, you might be doing more harm than good.
In addition, each case is different, with various degrees of severity…and just as many personalities to go along with it. In previous articles in this series, we have touched on what Crohn’s Disease is, who might be a target, the symptoms, and complications that might arise.
But in this article, we are going to focus on what people suffering with it would love to say, but might not have the courage to speak up, or get someone to listen.
Often, someone who has a difficult time listening to a loved one, might hear the message a little more clearly from a stranger, or an article. So, if this describes you, please listen up.
Crohn’s Disease Realities
Don’t Compare Your Illness
It’s not uncommon for a person, when talking with a Crohn’s Disease patient, to compare their most recent bout of stomach flu when they hear what the symptoms are for this disease, such as uncontrollable diarrhea, nausea and vomiting, fever, fatigue, and more. A person with Crohn’s probably wouldn’t wish the flu on anyone, but the flu doesn’t compare to living with disease day in and day out, for life.
Crohn’s Disease is Far More than Just Running to the Bathroom
While the trips to the bathroom are frequent during a relapse, there is much more to this disease than that, unfortunately. As we described in previous articles, there is also pain, fatigue, fever, vomiting, side effects from the multiple medications, and the complications that are often generated by Crohn’s.
Crohn’s Disease is a Chronic Illness
All the symptoms, lack of functionality, and embarrassing circumstances, are not going away. Not long term, at least. There is no cure for this nasty disease, and a person with Crohn’s Disease will go through the cycle of symptoms again. Over and over again, actually.
It’s Difficult to Diagnose
Because there are so many far-reaching symptoms associated with Crohn’s, it is sometimes hard to diagnose. In fact, some people will go years with the symptoms, and new episodes, before finding out what is wrong. For example, frequent bouts of diarrhea could be Irritable Bowel Syndrome, which is not the same thing as Crohn’s Disease, nor should they be medically treated the same. Even some doctors will think it’s something else for a while, especially if a patient is not discussing all the symptoms.
Looks Can be Deceiving
Just because a person looks healthy, doesn’t mean they aren’t battling an illness, even during active stages. Please don’t assume that when a person with Crohn’s Disease does not appear to be doubled over in pain, pale, or running frantically to the bathroom, that they are feeling fine, because they might be in the midst of an active relapse. Some people just become an expert at masking the symptoms.
They Have Probably Tried Everything They Have Heard
Again, most people mean well when they want to share what they have read or heard about a magic cure. But, there is no cure, despite what someone’s uncle, twice removed, swears by that cured him. It didn’t. He is either in a longer-than-normal remission, which is great, or he was misdiagnosed in the first place. Most people with Crohn’s Disease would try anything, and have, without a good outcome. It’s best that they follow doctor’s orders, due to potential life-threatening complications that are associated with Crohn’s. However, that doesn’t mean they are not willing to hear new ideas. Just don’t get upset or assume they don’t want to get better, if they pause at jumping on the latest miracle.
No Horror Stories, Please
Unless you are sitting around a campfire and the story has nothing to do with Crohn’s Disease, refrain from sharing horrific stories about it. People who have it, get it. They really do. Crohn’s is a serious disease that can afflict its host with deadly complications. They feel for you, if you knew someone who had horrible complications. But, that doesn’t mean they want fear instilled in them by hearing about it. It would be like telling someone you have just been diagnosed with lung cancer, and they proceed to tell you their parent died from it. Not exactly encouraging to hear, so you might want to keep that to yourself, unless there is a positive lesson to be learned from it…such as, they weren’t compliant with medications and routine doctor visits.
Crohn’s Disease Realities – Final Thoughts
These are just a few examples of what a patient with Crohn’s Disease might want you to know. But, if you have any doubt, just ask. If your loved one, friend, or co-worker is battling this disease, be honest with them. Mention that you want to do and talk about what they are comfortable with, and have them tell you what that is, then comply with their wishes.