The Do’s and Don’ts of Talking with Friends who have a Chronic Illness: A Communication Survival Guide

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A Post from OSCLG member Abby Erpelding, based on a paper she presented at the OSCLG Annual Conference in San Francisco.

At the age of 24, I was diagnosed with Crohn’s Disease, a chronic inflammatory condition of the gastrointestinal tract. From the moment I began disclosing my chronic illness to friends, family, co-workers, and strangers, everyone had a story to share with me—whether or not I wanted to hear it.

After experiencing life with a healthy body, I have learned to accept my ill identity and the reality of embodying that label. The stories others share greatly affect how I internalize my illness. I constantly struggle not to become someone else’s story. As a result, in hopes to shed light on these interactions, I provide some quick tips for them.

Don’t don't

  • Don’t provide unsolicited comments. For example, “My coworker has that disease and he is in the hospital right now.” From my experience, this just makes the individual with a chronic illness anxious. It is unlikely that they will confide in you again.
  • Don’t publically post your concern about their illness on social media. It’s not a good idea to post on Facebook: “My thoughts and prayers are with you since you were just diagnosed with your horrible disease.” You may think you are being supportive; however, this is their story and their choice as to when and how to share it.
  • Don’t treat your friends differently then you did before their diagnosis. Don’t end a conversation with, “I’m sorry to talk about my problems. They’re nothing compared to your issue.” They still want to hear about your dreams and hardships. Don’t apologize for sharing because you think their problems are worse.

Dodo

  • Do try to be inclusive when choosing activities or public outings with friends. Select activities that won’t make your friend stand out or feel uncomfortable.
  • Do tell positive stories and/or share inspirational thoughts when you learn about their illness.
  • Do practice active listening skills. It’s important that you provide feedback by reflecting what is said, rather than providing your own input.

Patient-centered communication is critical to the success of someone living with a chronic illness. However, the support physicians provide about communicating your illness with others is limited. This leaves identity negotiation up to the person with the illness, and these challenges can be particularly challenging in some situations.illness

For a female patient living with a chronic invisible illness, the need for coping mechanisms often increases, as women often find it necessary to legitimize their disease to others. In addition, because patients with an invisible illness regularly appear healthy, they experience moments in which they must decide whether to reveal or conceal their illness. This decision can often create tension as they struggle to manage their new identity.

I have Crohn’s Disease, but it doesn’t totally define me. Being aware of these basic do’s and don’ts presented here can help me—and others living with chronic illnesses—manage our complicated identities.

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4 thoughts on “The Do’s and Don’ts of Talking with Friends who have a Chronic Illness: A Communication Survival Guide

  1. Thanks for your thoughts on how to communicate with those with chronic illness. I agree with what you’ve said, and would add my own “please don’t.” I am an amputee, and i live with chronic phantom limb pain and suffer not only from that pain but from copious side effects of pain medications. I have difficulty when well meaning people I care about offer me suggestions on how to treat my pain or ask me if I have heard about the latest study on phantom pain or new prosthetics they saw on 20/20 or 60 minutes or they saw mentioned on a website. I know that they are trying to help, but when several different people ask whether or not you have tried acupuncture or hypnosis or mirror therapy, it’s hard not to get defensive. I am well educated about my condition, and unsolicited suggestions from people who know little or nothing about my condition only leave me feeling frustrated, like I am a failure because none of these therapies worked (and yes, for the record, I have tried them all). Here’s what I would rather hear: “I’m sorry to hear you are still having pain. Has anything you’ve tried helped at all?”

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  2. Thanks Laura for sharing your experiences. This is such a great addition to the list. I loved reading your examples of the unsolicited suggestions you received, and how frustrating the experience can be at times. I have also experienced well meaning friends or family members providing me with the latest treatment options from the media. It does make you feel defensive and frustrated when you have to go over why, in my case, aloe juice, won’t cure my disease. I would love for everyone to ask a question similar to the one you presented. It would not only make the person you care about know you believe they are capable of handling their health issues, but also give them a chance to share what’s on their mind.

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  3. Thank you., I teach senior nursing students about chronic illness, how it affects peoples live 24/7, how an acute illness can be affected by a chronic illness,etc. Your words are great words of wisdom I will pass on to my students. karla

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  4. Thank you so much for taking the time to comment. I am so glad to hear you will share this information with them. I interact the most with nurses and have so many stories I could share. The nurses I love the most don’t really focus on my illness in our conversations. They often will ask me about my weekend plans or my personal life. I see my infusion nurse monthly and she always gets my lab results early and schedules my appointments for the next month. She doesn’t have to do either of these things, but she makes me feel important because she does. I remember a nurse in the ER that was young and inexperienced. I was scared and in pain and she told me a terrible story about someone she treated with Crohn’s Disease. The story did not end well, and the moment she left the room I started to cry. Five years later I still tell this story! Nurses have a real impact on their patients especially those living with chronic illnesses.

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