Improving Your Communication with RA

Patient Expert

People who live with a chronic illness, such as rheumatoid arthritis (RA), may face challenges from “outside perceptions." How others perceive your conditions may leave you feeling isolated, irritated, angry, sad, or misunderstood.

Outside perceptions
I developed RA when I was 19 years old. When people learned that rheumatoid arthritis was the reason for my slow, shuffling gait, and my inability to do everyday things such as turn a door knob, or sit down easily on the floor, I often heard, “But, you're too young” A number of people I encountered had the perception that RA is an old person's disease, probably reinforced by the word arthritis, which is often understood to be osteoarthritis – a condition that usually strikes folks who have more mileage on their joints.

There may also be a perception that the person with RA is “faking it” - especially when an hour can make a big difference in how one gets around. How could you be so immobile earlier this morning, and now you're bouncing around like a child awaiting the arrival of Santa Claus? What may not be apparent to the other person is that movement may lubricate the joints, medications could have kicked in, or the weather can turn, bringing about a change in barometric pressure.

I have been fortunate over the course of my working life not to experience derision from my colleagues. Others may not have been so lucky, facing out-right discrimination, or a more subtle kind of resentment. These kinds of situations are very real. Some of you may have experienced various forms of this out in the community. However, at other times, our own perception can color interactions, which is the focus of this article.

When outside affects inside
Gustave Flaubert, said that there is no reality, it's all perception. Stop to consider that your reality – the way in which you see the world, is through your eyes. It's like you spray a little bit of "eau-de-you" over whatever experiences you have. It's normal to interpret your interactions in this way. You form your opinions, make your judgments, and engage using the information you have from previous encounters. You may even practice a bit of mind-reading and speculate on what the other person is thinking and feeling. However, sometimes your mind-reading abilities are not as good as you think they are. You may perceive a threat when none was intended. A slight where there wasn't one.

A spritz of "eau-de-you_"_ and communication can easily fall apart, as evidenced by this quote: “I know that you believe you understand what you think I said, but I am not sure you realize that what you heard is not what I meant.” Unfortunately, the original source is unknown, but Richard Nixon, Robert McCloskey, and Alan Greenspan felt the need to use it to highlight the confusion that often occurs in communication.

Reflect back upon conversations and interactions. Were there times when you made an assumption that was untrue? Did further discussion reveal that what you heard/saw/felt was not what was meant? Did you spend a lot of time rehashing the conversation? The endless looping of I'll say this, then, you'll say that thoughts result in stress.

There may be a chance that you are doing some heavy lifting with a theory which is used in psychology and cognitive science called “confirmation bias." It is “a tendency to search for or interpret information in a way that confirms one's preconceptions.” Get curious and follow the threads of your thoughts to see what you can discover about your perceptions.


Fine-tune your communication skills
How you communicate with yourself, as in your self-talk, and with others, can improve with a shift in perception. You get better at recognizing when to “hold 'em and when to fold 'em.” Sometimes, a well-worded, open-ended question can lead to a whole new level of communication, compassion and comprehension. Try some of these sentence starters: "Tell me about...”, “I'm curious about your reason for...”, or “I wonder how...”.

When you are feeling vulnerable, it can lead to feeling easily offended. This can trigger the stress response, which affects you physically, emotionally, and mentally. With a perception change, you may notice that you start feeling less vulnerable, such as in this experience I had at the dog park.

Let go
Do you hold on tight to negative emotions for far too long? While you are rehashing, replaying, or revisiting them, you are flooding your system with stress hormones, which paradoxically, prompts you to do more of the same. You may become more rigid in your thinking which, like those arthritic joints, don't allow for a lot of movement. Perception narrows. Communication freezes.
You can thaw and let go of those negative emotions by changing the lyrics of “Let it snow, let it snow, let it snow” to “Let it go, let it go, let it go.” (Or, just channel your inner-Elsa from Frozen.) When I catch myself holding on too tight, I'll sometimes sing a round to remind myself that I can make a more positive change by letting go.


Our understanding is correlative to our perception.” ~ Robert Delauney

While you can't be responsible for how others think, you can work towards change – helping to educate and inform, inviting understanding and compassion. It creates changes to open doors, hearts and minds.

See More Helpful Articles
Change Your Thinking to Cope Better with Rheumatoid Arthritis
Coping with the Stigma of RA
A Beginner's Guide to RA: Friends and Family.

Marianna Paulson is known as Auntie Stress. On her website, you'll find links to her two blogs, Auntie Stress Cafe and the award-winning, A Rheumful of Tips. She also publishes a mostly monthly newsletter called The Connective Issue. Sign up here to receive information, tips, and to learn about giveaways.