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What I Wonder When Others Say 'You Look Well'

Growing up, I was the “fat kid” at recess no one wanted to play with. I distinctly remember being thrown into the middle of the game “Ring Around the Rosie” and instead of the usual chant of “ring around the rosies, a pocket full of posies…” my classmates would sing, “blubber, blubber, blubber, blubber” as I stood there and cried.  Then, as if on cue, they all laughed hysterically as they “fell down.” Yes, I was one of those kids. Good times, I can assure you of that.

The years between first and eighth grade were an absolute nightmare. Then came freshman year of high school. Call it a growth spurt. Call it better eating. Call it exercise. Call it whatever you want. All I know is that the weight that held me back for so many years, the weight that made me the brunt of jokes in the classroom, the weight that had me eating PB&J sandwiches in bathroom stalls at lunchtime because no one would let me sit at their table… the weight that kept me from the birthday parties that everyone else was invited to, that weight was suddenly gone. Although I know it didn’t happen overnight, it sure felt like it. In one “skinny minute” (my other half taught me that), I was being noticed. People actually “saw” me. I had friends. Classmates wanted to hang out with me. I finally had a name other than “Fatty.” It was unbelievable.

Then, as if by magic, the pendulum began to swing the other way. I became interested in designer brands of clothing. Nothing else would do. My makeup had to be high-end. My hair had to be “just so.” If there was one single solitary strand out of place, it got pulled. I had dates, lots of them. I never had to worry about who would ask me to Homecoming, or to the prom because if I wasn’t dating someone, I was certainly going with someone else. No question about it. I failed gym because I didn’t want to mess up my hair, and I took pride in that. Looking back, I don’t find any of this attractive. None of it. As a teenager, the majority of us lived for that kind of recognition. As shallow as all of this sounds, I never forgot what it felt like to be teased, bullied, or be the brunt of jokes. Because of that, I never did it to anyone else. I came to appreciate, love, and respect the underdog. Deep down, no matter what I looked like, I was still that “fat kid.”  Deep down, I’d always be the underdog. That rings true even today.

Despite all that, I still loved the compliments. Sometimes a little too much, I think. In high school, my mom would jokingly say there wasn’t a mirror I’d walk by that I couldn’t look into. I took pride in myself, in my looks, and in my appearance. I grew up, became an EMT and then later, a paramedic. Career-wise, it was the best path I could have ever chosen for myself. The uniforms were a bonus. Who doesn’t like someone in uniforms? I took great pride in representing the EMS system I worked for.

I had a great run. I had a solid self-esteem. I had a great confidence. I knew who I was, and I was pretty sure of where I was going. I advocated for my patients. I advocated for myself. I advocated for the underdog. I did it well — for years. So what happened, you may ask? Complex regional pain syndrome (CRPS) happened. That put everything I had, everything I knew, everything I thought my life was, in a complete tailspin, self-esteem included. Suddenly, on the surface, I was back to being that “fat kid” on the playground no one wanted to play with. I lost my job. I lost my friends. I lost the life I once thought I was in complete control of. In my eyes, I lost it all.

CRPS is the “Grand Poobah” of all invisible illnesses. It is the double “Grand Poobah” of all chronic pain diseases. It’s the authority on the “fake it till you make it” syndrome. The robber of self-esteem and self-worth. Why? No one believes you have it until it brings you to your knees, and by then, it’s too late. By then, you feel like you’re nothing but a shell of your original self. Nights out are now replaced with nights on the couch. After spending an entire weekend throwing up because of your high pain levels, wine and happy hour is replaced with water and ice chips so you can rehydrate — and that’s only if you can keep that down. You lose weight because you can’t eat. You gain weight because what you can eat is fattening and you’re now sedentary. You feel like crap most of the time, but you don’t actually look sick.  So, if you don’t look sick, others might think you’re making this up. You know you’re not. You know how you feel. You know how dreadful this is. CRPS is the most painful chronic pain condition in medical books. You drew the short straw. It’s all yours now — except, you don’t look sick.

The struggle is as real as the effort it takes to not look sick. Here’s the million-dollar question. What do you do when those who know and love you tell you that you look “great?” This is a struggle for me and I have no idea what to say or how to handle it. My knee jerk reaction is one of recoil. I want to hide. I want to go home. I want to tell them that I don’t look good at all. I want to take them by the shoulders and say, “What are you not seeing?” Truth be told, the inside of me feels lousy. The inside of me feels ugly. The inside of me feels like I don’t deserve the compliment. I also feel that if someone thinks I look “good,” they’re just another one on the list who doesn’t believe I have the disease I battle every day. Or they might be one of the ones who believe I’m getting better — neither of which is true. It feels horrible to have these questions in my head, all because someone said I look “good.”

It’s ironic how life has come full circle. I’ve gone from not being noticed, to being noticed, to not wanting to be noticed. I’ve gone from wanting people to think I look good, to running in the opposite direction of any compliment that comes my way. Yet, when those near and dear to me say, “Wow Jay, you look like garbage,” it’s a compliment to me. I actually want to thank them for validating how crappy I feel. This has to stop. It’s destructive, to all involved. How does that happen? Well, I’m not sure. Until all invisible illnesses across the board receive the same recognition and validity as those you can readily see, I don’t think anything changes. I’m open to suggestions and to starting a dialogue. Common ground is a good thing. I went first. Who’s next?

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Getty Images photo via BCGraphix