A man in our neighborhood who knew I was having health problems asked recently, "How are you doing?" I gave a vague answer, but then he said, "Are you getting over it?" At first, I bristled inside. What a question to ask someone with a chronic disease! But then it hit me . . . he didn't know. He couldn't know because he hadn't been told. Neither my husband nor I had told him the nitty-gritties about my condition, nor had we given him any overall information. I had been living the hermit life; he now saw me out and about, so of course he assumed I was "getting over it."
I smiled gently and explained that this was a chronic condition I would be dealing with for life. He was visibly surprised and the look on his face told me that he genuinely felt bad.
My "share" belief is that the more people who know what's going on, the better. It drastically cuts back on embarrassment and/or anxiety. If I'm talking to someone who knows about my condition and I suddenly jump up and tear out of the room, it is immensely comforting to know that I won't have to explain things later, that I won't have to say, "It's not you!"
If I'm choosing not to eat something on my plate, the cook knows why and understands that I'm not trying to disparage their cooking.
If I do not attend a planned family gathering, they all know the reason and that I'm not trying to avoid anyone.
If I pass an unusually loud, growly, and smelly bout of gas (that rivals anything passed at a campfire of guys who just ate a huge dinner of beans), instead of dealing with aghast stares of disbelief, horror, and offensiveness, I get sympathetic looks of understanding. (Except from my granddaughter. I worry I might have traumatized her for life.)
However, that doesn't mean that I tell everyone, or that I even want everyone to know. In the case of this neighbor, he doesn't need to know the specifics of my disease because I'm not around him enough. But it was nice that he knew I was quite sick for awhile and asked about it.
So the question arises . . . who do I tell? How much do I tell? After someone knows, how often do I keep them updated? I certainly do not want to become one of those people that when others see me coming, they cringe and think, "Oh, no, we're going to hear about more poop!"
That is one reason for this blog. I was originally sending out a mass email to concerned family, but soon realized that, while some wanted to know every detail, others did not. For those who are truly interested in keeping updated, I give them this blog's address.
Who we tell may change over time. Once we reach remission, the number of people who need to be updated may drop. Or someone we haven't told who is now in our circle more often may need to know.
If we live with family, we should counsel with them on whom to invite into our "those who know" circle.
Years ago I read an article written by a woman whose divorced mother had multiple sclerosis. The mother did not want anyone to know. However, neighbors noticed that the mother seldom came out of her house, and when she did, she stumbled and walked unevenly. Sometimes her words were slurred. The neighbors came to the conclusion that she was an alcoholic. The mother preferred they thought she was drunk all the time than have them know the truth. It was tremendously hard on the daughter, who was a teenager at the time. People gave her cut out magazine articles about how to cope with an alcoholic parent. (This was long before the internet.) She was referred to Al-Anon. Concerned neighbors invited her to stay with them, if ever needed. The daughter lived in fear that Child Protective Services would take her away from her "drunk" mother at any moment. So in addition to the stress of caring for her mother, not being able to tell people the truth caused the daughter's situation to become even more stressful and hard to cope with day to day.
No, I'm not going to tell everyone I have ulcerative colitis. (But I wrote this blog, ha!) But nor will I allow my pride to make managing this condition any harder for me or my loved ones. My neighbor does not need to be in my "those who know" circle. But there are plenty of others who are, who have offered their support, and who I am very grateful to have in my life!
© Colitis Senioritis 2022
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