Someone recently asked me a question about a relationship with a close friend.

This person was feeling guilty because plans were made and, once again, she suddenly wasn't feeling well.  Rheumatoid arthritis (RA) symptoms took over, and the pain and fatigue meant that she had to cancel.

"I keep disappointing people I love," she said. "How can I figure out how to do this better?"

Several answers came to mind -- and she told me it was OK if I shared my thoughts with you.  I hope you'll also send in any reactions you have and successful ways that you deal with this common but irritatingly repetitive issue.

First, I wondered who was the most disappointed by the cancellations.  It is possible that the person who has the flare-up is really the one most upset -- usually our friends and family love us and want to help.  Some parents feel anxious about letting their children down.  That's natural -- we want to be reliable for our children.  But even small people are amazingly resilient and they are usually eager to be helpful and supportive.  I find that most impact falls on the person with the arthritis, and there is a tendency to project that disappointment and imagine that others are feeling let down and hurt or upset.  Usually this just isn't true.

But what if it is?  This leads back to my familiar refrain, one I keep saying because it is hard to practice:  You won't know if it's true until you ask.  You must talk about what's going on.

We love to be mindreaders, though none of us is very good at it.  Instead of saying, "I feel lousy today, and I feel even worse because I'm not going to be able to follow through on what we planned," we use whatever our favorite fallback is.

Maybe you withdraw, or you are the kind who anticipates a negative response -- so you get defensive before anything even happens.  Some of us play out scenarios in our minds, but never have the actual conversation.  You know your typical style.

A healthier way to go is to start the real conversation and acknowledge that you own disappointment -- and ask for feedback about where the other person is.  Some folks are trying their hardest not to let their RA have any space in their life -- but really the denial doesn't serve you, or your tribe.  Let them in.  Gather up your courage and state how you feel.  Let those who love you tell you how they feel.  Then you can move on.

A final practical suggestion:  You can build in "back-up" plans.  This requires some advance thinking, but it can help ease some of the pressure you may put on yourself.

If you find you have to postpone outings with a child, keep some good activities on hand.  These may be games, DVDs, books, -- things that your child loves, but only gets to do when you have to change plans.  Some of these things might be activities you can do when you're not feeling so well, and some might be things that are done alone.

You can adapt this idea for grownups, too.

What might you choose to do with a partner when you have to shift activities?  Maybe she likes particular TV programs or movies that you don't ordinarily like to watch.  A treat could be keeping her company during that sporting event or agreeing to sit close for a chick flick.  Letting the other person pick their favorite takeout, or being willing to sit outside with them when they garden -- or even play cards or a board game if that is something they like to do, and you ordinarily wouldn't join in -- can be fun and nourishing for your relationship.

I know one mother who couldn't attend her son's soccer game.  I suggested that she would watch him play a computer game and learn about it.  She really didn't like computer games at all, usually trying to avoid the whole subject when he talked about it.  But her son was passionate about computer games, and enjoyed demonstrating how proficient he was.  More was built in their relationship when she set aside her prejudice -- and sat beside him learning about this world he loved -- than could have been gained by her sitting on the sidelines, where she felt a "good" mother should be.

The object of the exercise is to know that at times you may need to shift course, but you still want to do something together.

Thinking of some alternatives ahead of time can make you feel more in control, and the person with whom you want to be feel your caring presence.  Along with that flexibility is the willingness to talk about how you feel and invite the same in response.  This practice will make your life much richer than mindreading ever could!

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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.

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.

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It can be so hard to get what we need from the people we love. Or even from the people who are supposed to help us -- like our doctor.

I came across an interesting quote from Arthur W. Frank, an author and medical sociologist.

He shares many perspectives on illness, but the one that got me thinking had to do with the pressure put on someone -- who lives with a disease -- to "adopt the role of the model patient" ... in order to get what she needs:

Since all these [family members and friends] value cheerfulness, the ill [patient] must summon up their energies to be cheerful. Denial may not be what they want or need, but it is what they perceive those around them wanting and needing. This is not the ill person's own denial, but rather [their] accommodation to the denial of others. When others around you are denying what is happening to you, denying it yourself can seem like your best deal.

To live among others is to make deals. We have to decide what support we need and what we must give others to get that support. Then we make our "best deal" of behavior to get what we need.

(At the Will of the Body:  Reflections on Illness, p. 67-68, Houghton Mifflin, 1991)

This may come across more strongly than you feel, but there is some truth to his assertion.

When you are ill, you begin to create a persona to help navigate your relationships -- because sometimes your families and friends don't want to hear about how sad or frightened or worried you are. The "Denial Bubble" is created by each person colluding in the fiction that there is nothing really wrong.

But you pay a price for living this fiction.

Playing the role of "The Cheerful One" -- when you are anything but -- can create isolation and deepen your sense that you are truly alone. It keeps others from finding their way to be close to you.

If you decide to "make a deal" in your own head -- by assuming what others expect without checking it out with them -- then you may also lose an opportunity to be authentic.

When we are frightened or vulnerable, we can overreact and decide to act brave or independent and not let others in.

But what about when you want someone's help or their listening empathy, and they can't let you be sick? Or needy?

This is the heart of what Frank is talking about -- the outside pressure to act a way that is potentially more damaging than the pressure you put on yourself from the inside.

We can get stuck and frustrated when this happens. Our partner doesn't want to hear about how difficult the day was because of our joints acting up, or our doctor looks away and starts jotting notes when we try to express how painful some symptoms are.

We can make a "mental deal" not to share, and feel resentful or hurt -- but that's not our best course of action.

Some alternatives:

Find a safe space where you can express yourself without fearing the pressure to be well.

A friend (or a variety of friends), a therapist, a message board all can help with this.

Keep track of how you are feeling -- not how others seem to be expecting you to feel. That can take some time to sort out, but it is worth it to distinguish "yours" from "theirs."

Check out what you're experiencing with the person who seems to "disappear"  when you express certain emotions.

Ask them if you are receiving the message they are giving -- or if there is some "crossed wire" transmission and you're not interpreting their signals correctly.

Make your deals in real conversation instead of in assumptions in your head.

Maybe you need to do more venting than your significant other wants to bear. Can you have some "real time" conversation, and then agree to switch topics for a while? Or agree to do your venting at home at a certain time, and not when you are out to dinner or enjoying a walk?

The most useful thing:  begin to notice the external pressure, and think about how you want to respond.

Even a few seconds pause to think about what's going on in a conversation can help you begin to do it differently.

And that can give you the space you need.

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A "teaching story" by Jack Kornfield recently came to my attention. It arrives from northern Thailand, where there was a great Buddhist temple and an ancient clay statue of the Buddha.

It was not the most beautiful statue, or even the oldest, but it was revered because it had withstood wars and natural disasters, and still endured.

At some point, one of the temple monks noticed that the statue had begun to crack. It was clear that soon it would need to be repaired and re-painted.

After a summer of hot dry weather, the cracks became worse. One of the monks shined a light into a particularly deep crack to see how much work would be required. He was amazed when his light bounced off a shining gold surface.

The other monks crowded around, and some began to look into other cracks. Everywhere the light shone it revealed gold. This ordinary old statue was a golden Buddha that had been covered in plaster.

With great joy the monks cleaned off the clay and a luminous golden Buddha now stood at the entrance to their temple.

They imagined that at some time, concerned for the safety of this precious work of art, the monks of old had covered the gold with the clay to protect it. Now the true nature of this lovely object was revealed and pilgrims from all over the world come to show their devotion.

This story has stayed with me because it seems to offer a metaphor for us. How many of us have allowed our essential luminous nature to be covered over?

Maybe we felt we couldn't let our light shine because of family pressures, or the roles we were expected to play at home or school.

Perhaps when arthritis struck, it was too hard to see our gold, and we sought a layer of protection against disappointment or loss.

When we cover over our true selves for long enough, we may even forget what's there. We believe we are ordinary, or serviceable -- we no longer remember our beautiful essence.

Regardless of the ravages of a disease, or the long hard years of struggle, or the losses we have endured, that beauty remains. We only have to glimpse the light, and be willing to uncover it.

That means letting go of that protective layer. Shedding the old thinking or habits we use to cover and diminish ourselves.

But the rewards are there -- not only for each of us individually, but for all who will benefit from witnessing our precious glimmer, and our courage.

Where is your light shining? Where is your beautiful essence?

What would it look like for you to uncover your inner gold and let it shine? We are each needed to make a difference in the world, and this is a way we can begin.

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