Scleroderma and the Holidays

It’s that joyful time of the year when scleroderma patients see family and friends. If you’re newly diagnosed, I suggest packing sedatives or something edible that will take off the edge. And by the way, if you’re newly diagnosed, welcome to The Suck. Don’t panic. I’m going to make you laugh at what scares you.

People. We’re helpers, right? We see a fellow human with a problem and we offer unsolicited advice because we want to help. Any human with a chronic condition has experienced the opposite of helping. People with families void of codependency don’t have this problem. Mostly because few families are void of being void of codependency.

After I was diagnosed in 1994, I had the option to leave college and come home to my family. I opted to stay in school in Wisconsin, far away from my family in California. According to my family, I did it because I am “a stubborn Scorpio and fiercely independent.” I don’t know about you, but I took that as a compliment.

Sure, I’m stubborn and confident with stunning sex appeal, but it’s just a coincidence I am a Scorpio. Keeping my independence was the best decision for me. I believe my family would have done everything for me until the only working parts of my body were a fully functioning head and maybe – maybe my torso. I would’ve given up. At the time, scleroderma was a death sentence to those who knew little about it- especially after that movie, “For Hope” came out. When I’m unsure of something, I can talk myself into just about anything, even giving my responsibilities to my family. People, they’re helpers.

When family helps us, it’s not a bad thing. Forcing myself to adapt allowed me to live a fulfilling life. Some might call that ableist, but I had to become something that never was- an active scleroderma patient. And ADA requiring adaptations was a big help with this. I did not want people to visit or hang out with me because they believe I need their help.

Things got easier once I stopped being a warrior. War is a lot of work. To be constantly at war is exhausting, so I opted for hostile negotiations between my body and my screwed up and confused antibodies. I rest extra when needed. Avoid foods that promote inflammation for me like unfermented soy. I exercise, especially when it hurts because it makes the pain stay under control. It took me 15 years to get to that point and I hope that this blog will help others- maybe even save them some time.

I’m doing first person because I am basing it on my own experience. (trying to make it not about me, but still about me) What were we talking about? Oh right, helpers.

I have been through 20+ years of holidays, celebrations, backyard barbecues and intergalactic keggers. I have narrowed it down to three types of helpers:

Helpful: The person who never feels sorry for me and supports my decisions. Asks questions before they disagree about my health or offer advise. They never start a sentence with, “Have you tried…” Or “My doctor told me…”

Wellness Metric: The person who goes on about their own problems they cannot solve, then diminishes their own problems with a backhanded compliment. “You know Karen, compared to you I have no problems. I don’t know how you do it. I would have killed myself by now if I were you.” (Not hyperbole. This has been said to me more times thsn I can count.)

Not Even Sex With Thor: No matter how well I am doing, this person thinks it’s all an act. That I am being brave when technically, I’m just being. There is nothing that will convince this person my life is not miserable and I don’t need constant sympathy. I could tell them that while doing laundry I found $100 in pair of jeans; took that money to Vegas and bet it all on black. I could win $100,000 and use it to buy a ticket to see Paul McCartney, and become such good friends Sir Paul introduces me to Chris Hemsworth (whom for our purposes today, is single) and we spend the weekend together. When I get home, instead of breaking up with me, my boyfriend congratulates me on sleeping with his man crush. That could really happen and I would still get a, “You’re so brave.”

The one that irritates me most is the Wellness Metric.

Happy Holidays!