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 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.
- 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.
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.