A topic that comes up frequently in the chronic illness world is the notion of invisible vs. visible illnesses. A great deal of chronic illness patients have diseases, symptoms, and other factors of their health that are naked to the eye. Other chronic diseases manifest themselves in physical ways, making it obvious to distinguish what ailment the individual is plagued with.
I have been asked, numerous times, a rather interesting question from individuals inquiring about what it's like to live with multiple chronic diseases. The question? "Would you rather have an invisible illness or a visible illness?" Huh. It's a tough question for the chronic illness world. On one hand, having a visible illness allows for the community around you to understand and empathize with your situation. On the other hand, having a visible illness forces that illness or disability to be the first thing people see. Invisible illnesses, in opposition, allow you to lead a "normal-looking" existence, as you look relatively healthy on the outside. This welcomes misunderstandings, criticism, and a lack of empathy, however.
My answer: I'd rather have an invisible illness so I can continue to fight to become someone who is not defined by their diseases. (For more about my personal views on "I Am Not My Disease, a podcast with Mayo Clinic Center for Innovation.)
The effects of the invisible illness conundrum are two-fold: the medical community and the patient's loved ones both misunderstand the situation. Our health system is set up to treat and cure acute conditions in the patients that are seen. Although this type of care is just as necessary, it secludes the chronic community. "People in chronic pain are often misunderstood and mistreated by the medical community. They get labeled as 'drug seekers' in emergency rooms and, as a result, are denied much-needed pain medication," as explained by Psychology Today.
What is the solution here? How do we measure the symptoms of invisible illnesses and chronic pain? I don't have the answer to those questions yet; however, there is an agreeable place to start.
Start with empathy. Start with compassion. As cliche as it sounds, don't judge that book by its cover. I might be partially invisible, but I am NOT my disease.
About the author:
Kristin Coppens is a social media and digital communications professional, a health activist, an ePatient, and a multiple chronic diseases fighter and blogger. You can read more about her chronic illness journey on her blog, Chronically Kristin, or follow her on Twitter.
She will also be joining us this year at ePharma as an official guest blogger sharing insights from the event. ePharma will take place February 29 - March 2, 2016 in New York City. As a reader of this blog, when you register to join us with priority code EPHARMA16BL, you can save $100 off current rates!