Have you ever noticed that when people talk about chronic illness, the conversation seems to get more hushed, more low key, less energetic. Multiple sclerosis, lupus, rheumatoid arthritis, FIBROMYALGIA? When was the last time someone told you they have this and said it loudly and clearly?
This weekend I met a neighbor and she was telling me how she struggles to get good naps in her house because it’s so noisy (she lives on a river and motor boats are constantly going by on the weekends when she’s there). Then she said, “I have asthma and I need to rest.” (That was in a normal speaking voice – if a little bit low). I was surprised because I’m not aware that asthma makes you particularly tired – — or maybe it was the meds she takes. As usual when someone refers to anything chronic, I wanted to ask more questions but she’d moved onto the next topic.
Much later in the conversation, she again referred to her frustration with taking daytime naps and said, in a very hush, hush voice, “I have fibromyalgia and I need to take naps during the day.” I found myself wanting to shout, “Really? I have multiple sclerosis. What’s the big secret?”
I don’t know. Am I being too picky here? Am I looking for stuff that doesn’t exist? It seemed to me that she was almost fine talking about the asthma and not so fine with the fibromyalgia. And, that this does have meaning for how she thinks about this.
Rosalind
Julie says
It’s funny. Having a CI is so much a part of my life that it just comes up in normal conversation, just like any other part of my life. I might mention it in passing, in a normal voice, in a normal tone, at a normal volume, and someone who doesn’t already know about it is surprised. Like, even though people don’t want me to dwell on it, they still expect me to. Once I mention it, people are curious. I find it odd that so many people with CIs try to hide it, while people without CIs are simply curious most of the time.
I understand wanting to hide a CI, but I also understand how difficult and damaging that can be. We all have enough to deal with, do we want to add “keeping secrets” to the list? Personally, I feel like there are other things I’d rather spend my energy on. Besides, if we were all more vocal, there might be a bit less ignorance in our society. I’d hope.
Julie
kelene says
I have noticed that people don’t like to talk about it.. I didn’t like to talk about it.. Why is that? Are we afaird of looking weak or something. Personally I was Afaird that people would think I couldn’t do my job well if they knew I was ill. I have SJogren’s Sjogren’s and overlapping Myositis. No one knows what that is so I would say I have something like LUPUS but then I realized that it was important to education others and own my illness. This is a very important sujbect.
Rosalind Joffe says
You’re both so right. We have to stop feeling that it’s something to hide. For ourselves, if for no other reason!
Nancy Wechsler says
While most people where I work know I have Crohn’s disease (and I found another person there who also has Crohn’s disease), I have other disabilities I have found it harder to talk about because they are rarer and even I am not comfortable completely with the diagnosis. But one thing I’ve really noticed lately is that my level of fatigue and feeling ill, is treated so totally differently than the fatigue and feeling ill of another co-worker who is much younger and who recently became pregnant. Her fatigue and times of feeling sick is so much more supported and accepted and accommodated than my own I find myself getting resentful. I don’t want to get resentful, but this is also from a group of people who I thought understood my disabilities and yet I still feel they are critical if I come in late or don’t put in lots of extra time, etc. I’m glad we have reached a time where people who are pregnant and having a hard time of it are supported. But I would like to feel that same support for myself and others who have different disabilities. I’m lucky in a sense that my supervisor, who is the Executive Director, is totally supportive of me and genuinely concerned. Have others ran into this situation, or these same reactions?