Hiding Your Crohn's Symptoms from Family

I'm not married anymore, and I don't have children. My parents died more than a decade ago, and they died young. I have two sisters, and thanks to the younger of them, a niece and two nephews. They are my family, and we are close. One of my sisters, the oldest, lives in the same town as I, and we often discuss whether we should live together, because we are both single and plan to remain that way.

I have Crohn's disease, and that means that sometimes I have flares or relapses. When I have a Crohn's flare, my symptoms would be almost impossible to hide from anyone with whom I lived. If I had small children, I suppose I could tell them, "Mommy is sick right now," and not explain any further. With my sister who lives here, it is almost as difficult to hide my symptoms as it would be if we lived under the same roof. We talk daily, and we see each other several times a week. I talk to my other sister almost as often. Until a few months ago, I had told neither of them that I had Crohn's disease. I didn't so much hide my symptoms as blame them on other reasons: It was something I ate or perhaps irritable bowel syndrome. Maybe I'm getting my period. That last one doesn't work with the sister who lives here; she's an obstetrician and gynecologist, so she knows the symptoms of PMS.

My reasons for hiding the symptoms were different with each sister. My sister who lives 400 miles away often has problems in her own life, and she has three children to fret over if she needs to worry about someone else. I felt she didn't need to know that I had an illness that could hospitalize me and was similar to what killed our father. I also didn't want my niece and nephews to worry about me; they have no first cousins, and only two aunts, and they lost one set of grandparents when they were very young. I didn't want them to be afraid that I might die, especially when I was first diagnosed and they were much younger.

My oldest sister is, as I said, a doctor. I didn't tell her about having Crohn's disease and its symptoms, because I didn't want her to assume the role of my primary health care provider, especially because Crohn's disease is not her area of specialty. I didn't want her to second-guess my doctors - who are quite competent - or to question my treatment or examine my medical records. She's seven years older than I am and has always been the one "in charge" in our family, and I wanted to assert my independence by hiding my Crohn's symptoms, by handling my illness by myself.

If either of my sisters were compulsive worriers, hiding my Crohn's disease and symptoms might be a good thing to do. I wouldn't want them to waste time worrying, and I wouldn't want my sister who doesn't live here to feel unable to help me. I don't want either of them to compel me to live with them so they can care for me; my Crohn's disease and its symptoms aren't so advanced that I need that kind of care. Both of them have busy lives and plenty to do without becoming a caregiver, which I don't need anyway.

When my sister who lives elsewhere read my first articles about Crohn's disease, the cat was out of the bag. She called and questioned me, and I explained. I think she felt hurt that I hadn't trusted her enough to share my illness and its symptoms with her. She is, after all, my family. It was a relief for both of us that she knew. I told her about being diagnosed, having had several years when the Crohn's was in remittance with few, if any, symptoms and about the symptoms I do have, especially during a flare. She understands that this isn't going to kill me, at least not any time soon, and she doesn't feel the need to worry. She also is not only able to listen to me, but she actually wants to. She wants to know what is going on in my life.

I am still hiding my Crohn's disease and flares from my sister the doctor. She doesn't read my content, so I'm not concerned that she will find out about it here. She is also unaware that I have lupus. She sees my Crohn's symptoms as irritable bowel syndrome and doesn't worry. She is sometimes annoyed if my symptoms, or flares, interfere with her plans (when they include me), but other than that, it doesn't affect her life. I still think that if she knew I had Crohn's disease she would want more control over my life. (I'm fairly sure this concern of mine dates back to our childhood.) I want to be independent, and I see hiding my Crohn's disease and its symptoms to the extent that I can, from her as the best way to stay independent. Yes, she is family, too, but she's an entirely different person from my other sister. She would see my Crohn's disease as her responsibility and possibly her burden; she would feel the need to do something about it or for me. My other sister, the middle child, wants to help if I need it and listen when she can or I want her to, but she doesn't see my life as her burden or me as her responsibility.

If you have Crohn's, should you let your family know? If your family would worry excessively, or if it would throw your household into an uproar, then maybe not. Maybe your spouse should know that you have Crohn's and be aware when you are having a flare or a lot of symptoms, but no one else should know. I think honesty is essential in a marriage. If your family would rally around you, and your older children would take on some of your household chores when you have symptoms - which would reduce your stress considerably - then maybe they should know. Sit down with them, and have a family counsel. Explain it to them in terms that they can understand, and assure them that you are being taken care of by doctors, and that your illness is manageable and not usually fatal. The best thing you can do for your family is to take care of yourself. If hiding your Crohn's symptoms, or trying to hide them, would cause you more stress than being open about it, then it's better for all of you to be honest and explain the situation to them.