A suit hangs on a hanger as a measuring tape winds around it.

Suits: An Expensive Fashion Statement For Someone Living With Lupus

The average cost of living with lupus in America is $22,000 and $50,000. The cost of lupus is based on several studies. Yes, there is a cost associated with lupus. I know first-hand. When I was diagnosed with lupus in 1990, I remember hearing that I would need to have 2 wardrobes. At the time, I was on high-dose steroids. I had a large desire to just stop taking the drug because of the moon face. The idea of having 2 wardrobes and the cost never even crossed my mind during the first 10 years.

Once I entered college, my weight dropped. Instead of gaining the freshman 15, I lost 30 pounds. I was skinny for the first time in my life. My wardrobe consisted of tee shirts and shorts. I wore sandals when I could and tennis shoes on rainy days. If I were out at night or if south Florida was hit with a random 50-degree low, I wore jeans and a jacket. I didn’t go to the gym that often or to the 2 pools on campus because there just didn’t seem to be a need to do so. I walked everywhere I needed to go. I ate only chicken and fish in the cafeteria. If neither were available, it was pasta with marina sauce.

The cost of suits adds up

When I started my first job, I began to realize the cost of nicer clothing. A shirt, tie, and dress pains every day of the week started to add up. I tried my best to remain on low-dose steroids and to eat light to avoid extra pounds. If I were on steroids, I tried to loosen my belt as much as possible and squeeze into pants. I would try and squeeze into clothing as much as I could until my mother would notice and take me shopping. My mother, the queen of clearance items, and for sale signs, would take me out and we would be 2 pairs of the same pants and 2 pairs of the same shirts. We would frequent TJ Maxx, Marshalls, and JCPenney. I only wore one brand of jeans, Gap baggy style. Every season, the store clerk had to measure my waist, neck, and sleeves. I wore the same sort of outfit every day of the week. My wardrobe felt boring.

Buying larger suits to accommodate weight gain

After graduating from law school and starting my first job, my mother and I went on a shopping spree. I needed pictures and paintings for my office. I needed to frame my degrees. I had to purchase suits for the office and a few sports coats. We bought larger suits than the first year because I was undergoing steroid and Cytoxan treatments due to my lupus nephritis diagnosis not long after starting my job. I remember Judge Cole telling me that she loved that I came into the office dressed professionally every day of the week. I smiled because I wanted to do anything to make her happy. I purchased a set of my own suits after my lupus nephritis went into remission. I purchased three different suits that looked nice on the day of purchase but were cheap after I wore them a few weeks. The suits were half the cost of what I would have spent at the department store.

Multiple sized shirts and pants

Living on a steroid lifestyle means trying on clothing each day to figure out what your body can endure. In order to make my dollar stretch a little, I began moving back to my old routine. I would purchase 2 pairs of slacks in different sizes. I always had at least one or 2 sports coats on the back of the office door, for those last-minute courtroom appearances. I bought a few more shirts and I started going to the gym. I ate low sodium soup and salad for lunch most days of the week. If I didn’t eat soup or salad, I ate a low-calorie frozen meal. My weight would fluctuate depending on my mood, my level of stress, and my ability to exercise.

What I wear today with lupus

Today, I rarely wear a suit unless I am attending a meeting virtually or in person. I have 2 eggplant suits in 2 different sizes when I need to advocate on behalf of issues related to lupus. I have several other black, grey, and navy blue suits in 2 sizes depending on my plans for the week. I have dress shirts, sweaters, and tee-shirts in 2 different sizes. When my family looks in my closet, they often tell me that I have too many clothes. I always remind them that some are back up. For me, having 2 wardrobes is central to living with lupus. Not because of steroids. As lupus patients, we must always be prepared for the unknown and that includes our wardrobe.

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