I am happy to report that in addition to blogging here, I am now also blogging on the wonderful Creaky Joints website. Creaky Joints provides an invaluable forum for information sharing, support, and advocacy resources for persons with arthritis and related conditions. My first blog post is A New Way to Interpret “But You Don’t Look Sick,” an excerpt of which can be found below. I look forward to more posts, which will include occupational therapy-specific strategies as well as tips for parenting while managing autoimmune-caused arthritis. If you have any ideas for future post topics, let me know in the comments section!
“When I communicate my diagnosis of rheumatoid arthritis to someone for the first time, I’m often told that I ‘don’t look sick.’ Many people understandably feel that being told they don’t look sick is delegitimizing. It is easy to interpret the statement to mean, ‘You don’t LOOK sick, so you can’t really BE sick.’ This is particularly tempting for invisible illness sufferers, as most have struggled to get appropriate diagnoses and have at some point been told that their disease was all in their head….
It is understandable that those of us with invisible illnesses feel defensive when we are told we ‘don’t look sick.’ However, sometimes the statement is really more about the speaker needing a little time to process this news, than it is a lasting statement or critique of the patient.I see the statement as more about the person learning this information going through a rapid mental process of surprise, disbelief, and acceptance, rather than them deflecting or minimizing the speaker’s reality. In that moment, I have a choice about how I can interpret their statement that I ‘don’t look sick;’ I can be defensive, or I can see that statement as a bridge to their ultimate acceptance/learning about the disease. I often say, ‘I know, I don’t feel like I look sick either, but I guess you just can’t tell from looking at someone, right?’ and then I offer to answer any questions they may have.”