I Am Not a Slob, I have an Invisible Illness

Lisa Copen

“Maybe you could find some shoes that look a little more professional,” said my boss, just days after my diagnosis with rheumatoid arthritis. I was 24 when I discovered that life as I had known it was over. That was 19 years ago.

Unable to put weight in nearly any part of my feet and getting continuous cortisone shots, I had succumbed to wearing office work attire with nylons and cute socks. . . And Keds tennis shoes. I thought it was a temporary part of RA, but I have worn less than 5 pairs of shoes since then–including a pair of sandals for six years that I repaired with duct tape.

I am not a slob, but it feels that way. Like Maria in West Side Story I long to sing out, “I feel pretty, oh so pretty.” Instead I just feel heavy, clumsy, off-centered.

I once worked in high-end retail boutiques. I had closets of shoes, scarves, fun clothes, and business attire. I had hats, jewelry, and loved to shop. I was in charge of window displays at the mall and I helped women put together outfits with accessories in colors that flattered them.

But since then so much as changed. . .

I share these challenges I have in case they sound familiar to you:

• I have gained weight, lost it and gained it back, thanks to prednisone. My round face is very round now and I always feel puffy.
• I have not found a bra that fits well for over ten years, that I can get on and off and offers support.
• I have Mary Jane orthopedic shoes. Though they are sort of cute for diabetic shoes, they don’t look stylish and they really do not “go with everything.”
• I cannot do anything with my hair since my arms don’t reach up or back to curl, blow dry, etc. I let the curls air dry and fortunately it looks okay if I use a lot of anti-frizz items.
• Due to the degeneration of many joints, one shoulder is higher than the other, causing every shirt to fall off one arm and show my bra strap. Anything with a v-neck is off-centered in a matter of minutes. One sleeve always appears longer. I didn’t know about the sleeve length issues until my husband admitted it the other day.
• My hands are deformed, but my feet are scary. Little girls with their moms in dressing rooms are horrified to see my feet in the dressing room nearby.
• I wear a lot of black to cover up stains caused by my clumsiness. It seems I am always dropping something down the front of my shirt. My hands do not grasp things easily and forks go flying.
• I try to find clothes that are easy to get on and off; elastic waists for days of puffiness or pain, I buy long necklaces to trick people’s eyes into going up and down and not just seeing roundness when they look at me.
• No matter how hard I try, I can’t seem to find the right attire for different occasions. I feel overdressed or under-dressed. I find the perfect t-shirt to throw on only to discover it has a new stain from somewhere. I find a cute outfit for a conference but my black clunky shoes look like I have no style. I put on clothes for church I wore a week earlier and they are so tight from being bloated they feel like they were made for someone else. I end up in tears.

My illness is not noticeable by most people. And those who know I have rheumatoid arthritis don’t realize it effects how my clothes hang or shoes fit. They don’t realize my weight struggles are caused by medication and inability to do most exercise. They don’t know my deformities cause so many clothes to hang on me in weird ways and look silly. Instead, I just look like I don’t care.

I care. I shower (nearly) every day. I put on makeup every day unless I am seriously sick (in addition to being ill). I have put on pantyhose for special occasions even though I feel like one of those canned biscuit mixes about to pop. I put on perfume daily, coconut lime body spray, and every product you can find that says, “age defying.”

But I don’t feel pretty.

So, when I show up for the dinner you invited me to and my shoes obviously don’t match, please don’t give me “the look.” When I sit beside you at church to the Saturday night service, don’t let your eyes show me you are questioning why I chose this dressed up outfit. When I don’t wear a swimming suit to the pool but I do being the widest brim hat you have ever seen, please don’t fuss about wanting me to swim.

I am trying.. . .
I am trying. . .

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.

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