I love this article by Christine Miserandino. It’s amazing to me how differently we spoonies are treated at times. I relate completely to Christine’s story in this article.
First, a disclaimer: I am blessed to work for a great company with fantastic people. I am grateful every day for what I have. Flexibility and modifications allow me to continue working at the same career I enjoyed for 15 years prior to my diagnosis. I am now officially a “home office” employee, so I can work with my feet up or from bed when I must. I can often flex my hours, taking breaks as my eyes or joints require. I have set limits on my travel, which every manager I have had has respected. I am fully aware that at some point, all of this may not be enough, but for the last 5 years, I have mostly made it work. Pun intended. Duh.
That said, people have changed with me. When I first “came out” with my disease at work, things were suddenly, and subtly, different. Colleagues hesitated to include me on meeting invitations and virtual teams, concerned that they were “putting too much on me”. Managers tiptoed around me, offering a placating “How are you DOING?”, complete with the pitying look and the ever-present, but unspoken “Are you still going to be able to do your job?”
This is by no means a universal reaction, just one I never witnessed until I was “out” with my chronic illness. When it occurs, I know those who do it have the best of intentions. They just aren’t sure how to handle the new, sick me. They aren’t sure what to do when they see me attending events, shuffling gingerly to my seat, juggling my food at the buffet along with my cane, or sitting my wheelchair. To help them understand, I started offering up a smirk and this one-liner:
“The company hired me for my brains, not my brawn, and my brain hasn’t changed.”
As a self-declared nerd and as someone who, ahem, is not known for lifting heavy objects, I usually get a laugh. More often than not, it helps my colleagues feel more comfortable with my illness. I know I’m lucky to work in a career where this response can be both funny and true. If brawn was a big part of my job, as it is with many, I would be unable to perform in my former capacity. Though I most often utter it at work, this line is also effective with my doctor, with friends, and with family.
It’s not a perfect response, but when faced with others’ trepidation about my illness, it does the trick for me. Do you experience these moments? If so, what techniques work for you?