In the United States, approximately 130 million people suffer from chronic illness. Many of those people don’t look sick and many of those people may feel uncomfortable sharing their symptoms in order to “prove” that they are chronically ill. Unfortunately, even if they do share their symptoms the end result might not be what they had hoped for. The fact that people can experience different symptoms from the same diagnosis, and that those symptoms can be experienced at varying levels of intensity is not always known. Also, people don’t respond to treatments exactly the same way either, so what may help one person may not help another person.
It’s bad enough that the people are chronically ill, but to have to defend themselves on top of that is upsetting and unfair, to say the least. I have observed my daughter defending herself numerous times, and have also been the defender on her behalf, but I’ve now experienced it as the author who created a chronically ill character.
While writing the book I worried about whether or not readers would think Drea was sick enough, so in order to prove her illness by making it visible, I had her share her symptoms with family and friends, and had her take body inventories in order to determine what physical activities she might be capable of completing.
Many readers liked Drea’s character and were satisfied with her behavior, but one of the comments in the review published by Kirkus Reviews certainly reminded me of the tightrope chronically ill people are forced to walk: “The characters that love Drea despite her issues are a welcome contrast to the self-pity that sometimes colors other chapters.” First, the reviewer mentioned that the other characters love Drea “despite her issues.” Her “issues?” She is chronically ill! Then the reviewer mentioned self-pity. So if a person or character doesn’t look sick enough, s/he is judged, but if the person or character shares his or her symptoms then s/he might be judged as having a self-pitying attitude. How exhausting for a chronically ill person who is already exhausted just dealing with his or her chronic illness!
If you wish to read more on this subject, I recommend the book, How to Live Well with Chronic Pain and Illness, by Toni Bernhard, an author who knows and understands chronic illness.
Julie Jacobsen Deck 