Staying One Step Ahead of Scleroderma

Staying One Step Ahead of Scleroderma

Scleroderma and the Ordinary Girl

Sometimes when I’m sitting in my recliner thinking about the meaning of life, I find myself fantasizing about how my funeral will go. 

In my mind’s eye, it’s going to be a great party, with vases of sunflowers everywhere, plenty of my special brownies for afterward (my own recipe of course — after all, I am known for my special brownies), and a cup of tea. I am hoping a number of my favorite grooves will be featured, including a bit of Queen, a touch of The Beatles, and some Pink Floyd. 

As I was getting into whether I should go all out and actually set a theme for it (something along the lines of “come dressed as your favorite ’70s band”), I realized the absurdity of my mind’s meanderings. I was sitting and contemplating life for goodness sake, how on earth did I end up in the middle of my imaginary funeral?

This isn’t the first time I’ve envisioned how I want my send-off to go. In fact, there seems to be a pocketful of imaginary scenarios that I have tucked away in the recesses of my mind. They are all situations, outcomes, and ideas that I have collected, and all feature how I can stay a step ahead of scleroderma.

Sometimes it’s my funeral, but other times I’m receiving a bad prognosis from one of my specialists, or I am planning practical ways to cope once I am too sick to walk

It seems that I unconsciously like to reach in and select one to play out to myself on a regular basis. Usually, by the time I’ve realized what I’m doing, I’m so far into the fantasy that I’ve managed to make myself cry or have begun to belt out “Bohemian Rhapsody” for the neighbors to hear.

Yesterday, as I was obsessing about whether to go for a glossy or matt finish on the funeral service brochures, I caught myself again, and really began to wonder what on earth these made-up vignettes were all about.

Initially, it didn’t make sense. However, once I realized that the common theme was always about how I will manage possible future complications of my scleroderma (including my inevitable death from it), I realized what was going on.

Scleroderma can feel big and frightening. I rely on working with my team of specialists to figure out the best ways that I can live with it. However, in order to survive the challenges, it seems that I need to feel a sense of mastery over the disease.

Self-efficacy is associated with a belief in ourselves and knowing that we are able to meet and cope with the challenges that lie ahead.  It is connected to self-esteem, and one way to achieve a healthy sense of self-efficacy is to feel we are able to master difficult situations.

I am certain my imaginary scenarios are a way of creating a sense of mastery over my disease and what I envisage it will bring in the future. 

My unconscious rationale is that If I can’t stop myself dying from it, at least I can get one up on the end outcome by making sure I’ve planned the perfect farewell to everyone. If I imagine myself dealing with my doctors giving me results suggesting disease progression and I am able to cope with my own story, then I can practice mastering the emotions and thoughts I’ll have if it really happens. It’s preempting the bad stuff so that I can feel one step ahead of scleroderma.

I’m pleased that I’ve figured it out. I’m not certain how effective my mastery musings really are, but I have realized that there is an important plot line that I need to change, starting today.

No longer am I imagining my funeral. Instead, it’s going to be a great big party with Scleroderma Warriors from across the globe getting together to celebrate the discovery of a cure. I’m not certain of the dress code yet, but I’m pretty sure we will all be wearing teal, and vases of sunflowers will be everywhere. 


Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

One comment

  1. Chris Nickerson says:

    Kim. I paid for my funeral years ago because I was pessimistic about my future. Since then I have greatly improved and I seem to be living for ever. I have lost healthy friends on the way, always to the sudden onrush of cancer. I am glad I paid for my funeral as the price goes up every year, making mine now a bargain. So I recommend you hope that you will improve as I have. I nearly died from my disease in 1978. Now I will be 75 on 1st March 2019. All birthday well wishes welcome!

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