My son and I are podcast junkies. It drives my daughter crazy as we are always talking about the podcasts we just finished. I especially love that he and I share one podcast in common. We are both in love with This American Life in which they take a theme and then share various stories on the theme, all differing. A recent show was titled “Hiding in Plain Sight.” The first story which takes about 13-14 minutes to listen to tells the story of Mary Archbold and how she hid the fact that she was born without an arm from her Pilates students and in dance auditions. She shares why she chooses to hide it and a little about the feelings that go with this hiding.
Listening to Mary Archbold’s story made me think back to my rough days with rheumatoid arthritis. I remember ways I would prepare myself ahead of time for social gatherings and teaching jobs that would prevent those around me from seeing the intensity of my rheumatoid arthritis. It also made me wonder what tactics others take to hide their autoimmune disease. Here’s how I did it.
Every Wednesday the homeschooling group my family was involved with would gather at a park or restaurant. The kids would meander off while the moms tended to sit together at a table. I always arrived early and took a potty break whether I needed it or not. I didn’t want to chance having to go to the restroom after everyone arrived. I reminded myself on the drive over to keep liquids to a minimum so that I would not have to leave the table. Being early meant I could choose the perfect seat which was on the outside of the table. My goal was always to find a seat that allowed me to get up from the table with as few onlookers as possible. If I had to get up, I knew that meant slooooowly lifting myself up, hoping no sounds of pain escaped my mouth. If I did have to get up to check on my kids, who thankfully were almost always well behaved, I would intentionally start eliminating myself from the conversations until moms were engaged in conversation away from me. Then I would take a deep breath and begin the process of getting myself up from the table. The other reason I waited until everyone was deep into conversation or caring for their own children is that I didn’t want anyone to notice my limp or the slowness in my walk.
When I was in the midst of a flare, I did not want to talk about it with anyone outside of my family. I hated when people asked me about it. It felt like more than I could handle to experience the pain, embarrassment, and frustration and then answer people’s questions and reply to their suggestions.
When teaching I had similar ways of hiding my rheumatoid arthritis. First of all, I didn’t sit down. I taught for 3.5 hours and never sat down. I was always afraid that if I sat down, I wouldn’t be able to get up and since I was the focus of the classroom, I surely didn’t want to take the chance of having 20 some people have to watch me force myself out of a chair. I also waited until most people were out of the room on break before heading to the restroom. I could always walk slowly in the hallway because I was often stopped by students to talk anyhow. Walking slow just seemed normal during break which was a huge advantage for me.
I know I had other methods of hiding my flares such as having my son meet me at the end of outings with friends to pick up lunch bags, bringing a ton of grocery bags shopping and then asking the folks at Trader Joe’s to fill them lightly, and meeting a friend rather than having her pick me up so she didn’t have to see my attempts at getting in and out of a car.
My relationship with rheumatoid arthritis has been good the last few years. I am no longer in hiding. It is a wonderful feeling. However, I am now always looking at people around me wondering if they are at a place in their life that they have to hide something. It makes me a more sympathetic person overall knowing that life brings hard times for all of us in a variety of ways and sometimes those issues are just too difficult to share with those around us.
Do you hide your autoimmune disease? How do you hide it?
Cathy can also be found writing at her personal blogs The Life and Adventures of Cateepoo .
Published On: July 30, 2012