One of the hardest decisions ulcerative colitis sufferers have to make is whether to share that fact with their families. Obviously, if someone is reasonably young, they have no choice.
When you are an adult, however, what may seem like an obvious decision – to share your condition of ulcerative colitis and its symptoms – may not prove that easy.
I imagine you would not try to hide your ulcerative condition from your spouse if you have one; in fact, I don’t really know how you could. A sufferer is going to have ulcerative colitis symptoms and flares, and trying to hide some mysterious “alternate life” is going to create resentment, at best, and at worst, it may even cause suspicion. Further, the action of hiding your condition of ulcerative colitis flies in the face of the trust between husband and wife.
In my mind, the question of whether to hide an ulcerative colitis condition or its symptoms from family breaks down into two major divisions: Should a parent talk to his or her children about the illness, and should extended family be included in the availability of medical data?
Initially, one has to decide using his or her personal comfort zone. I have found that dealing with ulcerative colitis is such a personal and at times stressful (not to mention painful) situation, that unless my mind is in sync with my feelings I tend to do a poor job of coping. The possibility of symptoms and flares often will drive an ulcerative colitis sufferer to want to share information less rather than more, due to the feeling of vulnerability. Yet the very act of hiding the ulcerative colitis condition may increase rather than reduce that feeling.
Should you share your ulcerative condition with your children, or should you try to hide it from them? They are an important part of your family. If you do decide to share your ulcerative condition with your children, at what age do you “burden” them with the information?
I would think that part of the answer lies in the severity of the condition. Some ulcerative colitis symptoms are so severe, and some conditions are so severe, that there is no way to avoid making your family part of your support system. Additionally, it will scare the children more to misunderstand the situation than be enlightened. Children want to know that their parents are OK, and to see them writhing in pain from an ulcerative colitis symptom or flare will scare them.
On the other hand, ulcerative colitis symptoms can be explained in such a way that they sound worse than they actually are, and it makes sense to me that this information can be hidden from younger children. As they get older, they will be more observant, and that may be the time to clue them in about ulcerative colitis. Further, it seems that a parent does not want to inadvertently make the child feel like they weren’t “worthy” of knowing the information.
There is one overwhelming reason to tell your children about your ulcerative colitis condition, and that is because it can be hereditary. They need to know that fact so they can do the things necessary for proper bowel hygiene. In fact, they can begin to get symptoms at a reasonably early age.
A harder question to ask yourself is whether to share your ulcerative colitis with your extended family. I think it comes back to your comfort level and how private you are with your life. Some families are very close and hide nothing. Some families are very formal and don’t share information. Your family’s “social makeup” will, in large part, determine your decision as to whether you want to hide your ulcerative colitis condition.
Family members are just like other people in terms of insensitivity. In fact, they can be much worse, because they may act too familiar by assuming they can say anything.
As an ulcerative colitis sufferer, I have found that it is not so much a matter of deciding whether to hide your ulcerative colitis condition from family members as it is a decision as to how much involvement you want to have with family. If you are willing to be somewhat of a recluse, you can probably get by with it. Otherwise, you probably will have to let people know that you suffer from ulcerative colitis sooner or later.
I have found it much easier to let family members know about my ulcerative colitis condition, because it removes the stress of hiding it. And when I have a flare or symptom occur in their midst, I don’t have to worry as much about reactions. Finally, they know enough about my ulcerative colitis condition that if I have a serious attack, they will get me to a doctor.
My wife and I have made it a point to educate our children about ulcerative colitis symptoms and the basis for the disease. They are encouraged to do some of the same hygienic things I do. I would stress here that we did not talk to them in depth until they were about 13 years old. We did this so they would be old enough to understand they probably wouldn’t get it, but if they did, it would more than likely be manageable. It was not the end of the world.
The degree and timing of hiding one’s ulcerative colitis condition from family is, to me, the most difficult of all decisions, because this involves the dynamic of other people’s feelings and reactions.
Having said all of the above, the decision to discuss your ulcerative colitis condition or hide it has to be driven by your mental and emotional needs. You have the disease, pain and emotions. If you are uncomfortable with how you choose to treat the release of information about your ulcerative colitis condition, you will find that you and those around you will pay a price.
