What you say is just as important as what you don’t say. And, it’s even more important when you want to be successful in your work and you live with invisible AND chronic illness. Communication is king.
I have a hunch that not many people would disagree me with me about this. But, I wish I had a dollar (didn’t it used to be a dime?) for every time I heard a coaching client say what Carol (not her real name) said to me today, “I hate to use my high blood sugar (substitute MS, fibromyalgia, crohn’s, etc.) as an excuse for needing frequent breaks to eat and move around (substitute having a flexible work schedule, needing voice recognition software, etc).”
Why call it an excuse? She’s making herself feel badly about the need to talk about it – as if this is her fault. I think this is an explanation. Try this on for size and fit: “I hate explaining that I will do much better at work managing my diabetes if I take frequent breaks to take my meds and get some exercise.Put simply: The words we use to describe behavior can have big negative effects on how we feel about ourselves. Saying it this way, Carol achieves two things: (1) She’s going to feel a lot less negative about herself. (2) She’s more likely to have a successful conversation that gets her what she needs.
On the topic of talking and chronic illness, new research (Talking Your Way Out Of Chronic Illness) shows that talking about chronic illness helps people get better outcomes — psychotherapy, counseling, coaching. Hooray for this.
Diana Brice says
Talking about your chronic illness does help and needs to be ongoing. No apology necessary. Just yesterday a colleague noticed that I didn’t look well and asked me what was wrong. I told her that I felt really tired all of a sudden. She wanted to know why since I do most of my work sitting down at a computer (that’s another story) and how could I be tired. I reminded (she knows that I have lupus) her that with lupus one can begin to feel exhausted out of the blue and that it’s sudden and debilitating. She just didn’t get it. She said “I feel like that sometime” and I told her that it just wasn’t the same. But I know she didn’t get it. But I’ll keep trying to get her and others to understand.
Rosalind says
You know, I sometimes wonder if it’s realistic to expect someone else to “get it”. THen we have to be really clear about our own expectations for wanting others to “get it”. Do we want empathy, agreement about our choice of action or are we looking to find people who have similar experiences so we don’t feel so alone? It takes a lot of figuring on our part — but it can save us from feeling even more isolated.
Nancy Wechsler says
I agree with so much of what both of you are saying. I want people to get it, but is that realistic? I want people to be able to be empathetic, I want to not feel so alone or crazy or guilty maybe if I’m not working as hard on a given day as I do some other day. But I think only really rare wonderful people are able to empathize or “get it.” They usually are people who have something similiar in their lives– a chronic illness, a family member with a chronic illness or something that allows them to cross over that expanse and reach out to you and understand. I was at the pharmacy the other day and I over heard bits and pieces of a conversation a young woman with her 7 month old daughter was having with the pharmacist. It was clear she was having serious mouth pain. She looked at me and we started talking a little bit. About pain. And doctor’s. And pain medications and how it feels to get some of the prescriptions filled. She can come on a long drive just to go to a pharmacy that she had been told that the people there would treat her well. We talked some more. When we walked outside together she thanked me and said I was one of the only people she had been able to talk to and it made her feel much better.
One of the things we do get from talking to each other is that, when we do connect, we can help each other feel better — I think mostly cause we help each other feel less alone, less isolated. I know I felt glad that I had reached out and taken the chance of saying something to her. She could have thought I was some crazy person picking up some medicine…which is part of what I think she feels others will think of her. Instead we affirmed we were “ordinary” people, doing our best to get by, her with a 7 month old, a job, and husband (and much more) and me with a teenager, a job and so much more.
Rosalind says
That is the beauty of the web. We can share — and grow, together. I learn so much more as I write and hear all of your responses. It helps me develop my thinking so I can help my clients more fully. We all get so much from sharing – isolation is the pits.
Diana Brice says
I guess I don’t really expect people to”get it”. Nancy is right, it does take a rare person to understand and I have a friend who always seemed to understand when I would suddenly back out of a commitment because I was suddenly too exhausted to go, but she had a sister who had lupus. Now she has MS and I’m able to empathize with her. What I really would like is for people who even if they don’t understand what I’m talking about would accept that what I’m saying is real to me and simply say something like “I’m sorry you’re not feeling well” and let it go at that, instead of trying to talk me out of my feelings, especially when they opened up the subject in the first place by noticing that I wasn’t feeling well.
Rosalind says
I know what you mean — and it is unusual to find, unless the prson has had personal experience. It’s hard enough for you to feel what you do, both physically and mentally – but to also feel misunderstood just makes it even worse.
Nancy Wechsler says
Diane- sorry I am responding after so much time, but re-reading your comment, especially the second sentence: “What I really would like is for people who even if they don’t understand what I’m talking about would accept that what I’m saying is real to me and simply say something like “I’m sorry you’re not feeling well†and let it go at that, instead of trying to talk me out of my feelings, especially when they opened up the subject in the first place by noticing that I wasn’t feeling well….” makes me think of the friendship I have with another woman who has crohn’s disease. She was one of the first people I met who also had crohn’s disease and she is probably the person who taught me that you have to make plans, but be sure the plans are with people who will understand, really understand and empathize if you have to cancel out at the last minute. That was very helpful advice, and she and I have been friends now for a long time. We taken each other to the emergency rooms, we’ve cancelled out on each other, we watch a lot of ball games together, we enjoy renting dvd’s or when we are brave we go out to a movie or a concert. Right now we are trying to find time this week to get together!
By the way, I’ve been trying to talk about my chronic illnesses a bit more at work with the hopes it will make people understand why some days I come in late (and then maybe work late) and other days I call in sick, and that I always seem to be tired. So far it has helped to be more open about things. I was the most open with my “boss” and that really helped a lot. Which speaks to what you wrote about in your recent post I think.
Nancy
http://workitoutwhileyoucan.blogspot.com/