Stop asking me to dance…

I’ve lived with Chronic illness for over 20 years. During that time, I admit, I haven’t always been good at communicating what I needed from friends and family. Over the years, I’ve learned how to set boundaries and ask for what I need. The issue is, I’ve become more discerning of whom I choose to communicate those needs.

Christine Miserandino’s Spoon Theory describes how people with chronic illness manage energy levels. I’ve shared it with family and friends over the years and most say “Wow, I never understood before.” Unfortunately, time strips away memories. Although people in my life have good intentions, they forget my body isn’t like theirs. I may not look sick, but I’m not healthy and I have limits.

Over the past three months, I’ve had community spread pneumonia, COVID, rebound COVID, and now bronchitis and bronchial induced asthma. I’m physically and emotionally exhausted. In between each illness, I had a week or two of feeling okay and I attended the American College of Rheumatology Meeting

I even attended a wedding with my oldest and dearest friends.

During the wedding, I was exhausted. My friends kept asking me to dance and I simply couldn’t do it. Not because I didn’t want to dance, rather my energy was so low that I couldn’t wait to go home and go to sleep. I was exhausted from being sick, but even more exhausted from pretending that I wasn’t. Dancing isn’t for my benefit. It causes me pain and excessive fatigue. Yet, I’m made to feel bad when I don’t join my friends on the dance floor.

In between all of this, my car was totaled in front of my house at 5:30 in the morning. A neighbor mistook the gas pedal for the brakes and drove along the sidewalk taking out three vehicles. My car was towed the day before Thanksgiving and has been hostage by a tow yard ever since (long story.) It’s been added stress to my already weak immune system.

Throughout all of this, people keep asking me, “Why do you keep getting sick?”

Hmmmm….let me see.

I take an immunosuppressive drug to control my autoimmune arthritis. This drug decreases my ability to fight off germs. I work in the public sector where children come to school sick and coughing and although I mask up, they do not.

Now the holidays are coming up. Do I want to get together with family and friends? Absolutely.

Am I petrified of getting sick again? Absolutely.

I’m still on the fence about attending social gatherings, and I know people will be upset/annoyed with me if I don’t join in with the holiday cheer. Does that matter to me? Sadly, yes it does. I want to be social, but I need to focus on my health. I may not look sick, but I’m hanging on by a thread physically and emotionally. I’m even contemplating postponing my Inflectra infusion so I don’t risk getting sick AGAIN, fully aware that my body will pay the price. I plan to reach out to my rheumatologist this week to discuss options.

Until then, I’m sharing this image. Why do I keep getting sick? Because even though I look fine on the outside, my body is kicking its own ass on the inside.

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Kelly holds masters degrees in both Special Education and Speech-Language Pathology. She works full-time as a speech-language pathologist in both a public school setting and as an adjunct faculty member at a university, in Philadelphia, PA. She specializes in both autism and augmentative/alternative communication and took her skills to Uganda, Africa to start a special needs program for disabled children living in an orphanage in 2011. Kelly began experiencing symptoms of autoimmune arthritis in 1984 (while in her teens) but wasn’t officially diagnosed with autoimmune arthritis until 2001. Her first diagnosis was Sjogren’s syndrome. Eventually her diagnosis was changed to sero-negative RA and now Polyarticular Spondlyoarthropathy. She also manages thyroid disease (resulting from Graves Disease), fibromyalgia, renin-deficient hypertension, and disseminated superficial actinic porokeratosis (DSAP) on a daily basis. Kelly connected with other autoimmune arthritis patients via social media in 2008. She began volunteering with the “Buckle Me UP! Movement”, which evolved into the International Autoimmune Arthritis Movement (IAAM) beginning in 2009. Then became a cofounder of IFAA in 2013. She has represented the ACR on Capitol Hill as an Advocate for Arthritis, was a finalist in Wego Health’s Health Activist Hero awards in 2014, and speaks at various healthcare conferences as a patient advocate in the Philadelphia area.

One thought on “Stop asking me to dance…

  1. I have one of those signs. But mine moves around with me and she is way meaner. I saw someone coming my way once and I saw them look down and turn around. I said hey Jim where are you going? Well turns out Jim saw Sheryl coming up the aisle.

    Tough.

    Liked by 1 person

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