How to Talk About Your Chronic Illness
Written by Dr. Laurie on April 6, 2009
A lot of people have been talking to me about communication. It comes up in every conversation — how to talk with someone about having a chronic illness and, more importantly, how to keep talking about it over time.
One of my clients is a young mother. She wants to participate in the playgroup and take her turn having the children over and she wants to go on the trips with the kids. But she knows that her level of energy is unpredictable and that some days she wouldn't be able to have the kids — even though it might be her turn.
In this column I want to look at disclosure:
- How do I let someone know I may not be able to follow though on everything I want to do?
- How do I talk about pain or limitation in activities?
- How do I describe what my life is like without sounding like I'm complaining?
When someone asks me these questions, I am more interested in the "why" than the "how": What do you want or need someone to know? Why do you want them to know?
Once you're clear about your intention, it is easier to decide how to say it.
For example: one of my clients is a young mother. She wants to participate in the playgroup and take her turn having the children over and she wants to go on the trips with the kids. But she knows that her level of energy is unpredictable and that some days she wouldn't be able to have the kids — even though it might be her turn.
When I asked her "why" she wants to talk about her illness, she said, "I don't want to seem like a flake and I also don't want to overcommit. I want the other mothers to understand where I'm coming from." She has a clear reason, and a definite need to talk about her arthritis.
The next question is: For what outcome are you looking?
By that I mean — do you want empathy? Someone to listen so you don't feel so alone? Do you want concrete practical help with something? Do you want to negotiate some time or other considerations?
When you think about the outcome, what you say — and how you say it — can then be structured to get you there.
My client thought about this and realized she wanted to negotiate some flexibility with at least one other mother so that if she wasn't feeling great, they could trade off their days. She also wanted some consideration to be a part of the planning for the trips with the kids — she needed places to sit down and to not have long drives.
Based on that outcome, she chose one of the mothers who seemed most open and easy-going. She asked her if she would come over for coffee and then told her what we had rehearsed — that she had rheumatoid arthritis (RA), was often fatigued or in pain, and wondered if they could create a flexible schedule for the playgroup. The woman was sympathetic … but also told my client that she couldn't be flexible because she worked part-time — and had to ask for the days off ahead of time.
Back to the drawing board.
My client had to be persistent, clear, and brave to get what she needed, and she didn't want to broadcast her situation to the whole group — that wasn't her style (though other clients I know are more comfortable introducing this in a group setting). It was a little easier the second time around when she chose another mother. That mother was more than willing to be flexible — and to help my client think about other ways in which she could be supportive.
Bingo. Taking the initiative worked and the communication was at a level that was easy for my client.
There are two keys to this strategy:
- knowing what you need and want from a conversation
- then practicing what you need to say to get there
For some of you this may be about a conversation with a partner or child, or at work. But you can follow those two steps, asking, "What do I want from this conversation?" and "How can I phrase it so we head in that direction?"
All of us want to be seen, recognized and accepted. Being able to identify your needs and then practicing asking — out loud — is a first step toward that larger goal.
One other key lesson for us all: half of communication is being clear about what you need from someone else. But the other half — also vital — is being willing to receive what the other person says.
The "how" of communication is partly about your message, but also about receiving a message — listening to what's there. The combination makes communication.
We'll talk more about this next time! Please let me know how it is working for you.