Dr. Laurie on disclosing you have RA

A lot of people have been talking to me about communication. It seems to come up in almost every conversation. How to talk with someone about having a chronic illness, and more importantly, how to keep talking about it over time is the issue I hear most about.

In this column I want to look at disclosure.

How do I let someone know I may not be able to follow through 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 – what outcome are you looking for?

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, then what you say – and how you say it can 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 also not to 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 she told her what we had rehearsed – that she had RA and was often fatigued or in pain, and she wondered if they could create a flexible schedule for the playgroup. The woman was sympathetic, but also told her she couldn’t be flexible because she worked part time, and she had to ask for the days off ahead of time.

Back to the drawing board.

My client had to be persistent and 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, and that mother was more than willing to be flexible, and to help my client think about how else she could be supportive.

Bingo.

Taking the initiative worked, and the communication was at a level that was easy for my client.

Two keys to this strategy – knowing what you need and want from a conversation, and then practicing what you need to say to get there.

For some of you this may be about a conversation with a partner or a child, or at work.

But you can follow those two steps – 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 towards that larger goal.

One other key learning for us all – communication is about being clear what you need from someone else, but the other half is also vital – being willing to receive what the other person says.

The how of communication is partly about your message, and the other element is about receiving a message, or listening to what’s there.

The combination makes communication.

We’ll talk more about this next time!

But let me know how it is working for you.

Note: Dr. Laurie has been tied up with work obligations. This column is an oldie but goodie from her archive. 

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