Chronic Illness, Here's Why I Can't Help Making Fun of You


I waved at the mail lady and my shoulder flew out of socket. It was an out-of-body experience.

I sat down and my hip dislocated. I was bummed.

My skeletal remains will be found all over without a crime being committed.

I kissed the floor. It was shiny and slippery and I couldn’t resist.

I have Ehlers-Danlos syndrome (EDS), an autosomal genetic disorder which basically means it’s genetic and hops all over the family. I ended up with it along with my two sons. One of the main symptoms are frequent dislocations of any given joint, at any given moment. It’s difficult watching my sons being in pain or suffering from the many co-morbid conditions that travel with EDS, such as postural orthostatic tachycardia syndrome which travels with syncope, pre-syncope, severe dizzy spells, stomach problems and major chronic fatigue, and that’s just to name the basics. My sons both started exhibiting signs of the disease when they hit puberty. I didn’t become disabled until I was 40 years old. I had to learn how to cope with it, not for me but for them.

My sons and I use humor as a coping method. It’s less destructive than taking a baseball bat to an object — which is how we feel most of the time, except the bat is swung at us. We cannot participate in everyday life. No more hiking trails or trips to parks. Gone are the days of carefree activities and sports. We spend our days lying in bed and playing on our computers. We play card games, checkers, video games, make web videos, and once in awhile, we leave the house. Doctors don’t do home visits anymore. Ha!

We are not belittling our condition. Believe me, I am well aware of it of every minute of every day. It’s impossible to ignore. We call it ED with an S instead of pronouncing each letter as an acronym, because EDs is our invisible friend. He travels with us 24 hours a day. He is intrusive, rude, obnoxious, and a big bully that stops us from living life. What better way to deal with an ignoramus like that then with a sense of humor?

RESOURCES FROM NICU HELPING HANDS

If you’re a family who needs help with neonatal intensive care, please visit Project NICU, One-on-One Mentoring Program, Family Assistance Program, NICU Mom Connect, or Angel Gown® Program.

Yes, when I ask my doctor if I can have a wheelchair that looks more like a magic carpet or wear a mask to the hospital that has “germs are not mute” written across the front, we get funny looks. Sure, you might not think it’s funny to talk to a blown-up rubber glove or think it’s a little odd to name the IV saline treatment “Sally.” Our blood pressure cuffs cause peer pressure by whispering things like, “Come here, sexy blood, your red and white cells turn me on.” When my 22-year-old son dislocated his hip walking to the corner store, someone stopped to ask if he was OK. He replied, “I was checking for earthquakes.” We just can’t help ourselves!

Follow this journey on Doesn’t Surprise Me.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.


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