Dig Deep for the ‘Blessings’ Hiding Beneath Scleroderma

Dig Deep for the ‘Blessings’ Hiding Beneath Scleroderma

Scleroderma and the Ordinary Girl
Because I’ve been feeling gloomy since adding the diagnosis of secondary adrenal failure to my existing diagnosis of systemic scleroderma, I decided to try a little task that I used to offer my clients when I was a counselor. It’s a bit cliche, but in my experience, it gives at least a small positive outcome.

I assigned myself the job of finding things that had become “blessings” because of having systemic scleroderma.

“Are you serious?” I can hear my fellow Scleroderma Warriors exclaiming. “Big ask, my sweet. Good luck with that,” was my husband’s response. However, I’ve always been one to accept a challenge, so I decided to push on and have a jolly good crack at it.

Initially, I kept finding myself caught in a mental loop that stopped me from progressing. Every time I thought about something I had achieved, or remembered a recent positive life experience, I kept hearing my critical inner voice giving me mean and discouraging reminders. “You would have been able to achieve so much more if you were healthy” and “Your life would have been 10 times more positive without scleroderma,” were some of the thoughts I heard from my critical inner voice.

After banging my head against a brick wall (not literally, of course), I stopped trying and gave it some further thought. I quickly realized I needed to accept that my target for success and happiness has shifted. It has become less “big,” and more simple since becoming unwell with scleroderma. However, (and here’s the clincher) … this does not equate to any less of an achievement when I reach it.

Once I had freed myself from the loop of discouragement, I managed to come up with a few small ideas. The problem was that when reading them, I  saw that they lacked substance, despite being true. As I further considered each one it became clearer there was a hidden gem underneath the initial idea, and it turned out that it was definitely worth digging deeper to find that treasure.

So, here are my first three “scleroderma blessings,” showing my original idea followed by the treasure I found underneath:

  1. 1. Initial Idea: At least now Max brings me breakfast in bed. (This is so I can sort my pain relief before trying to get up). 

Real Treasure:  Breakfast in bed delivered by Max has been instrumental in showing me how much he cares.  It symbolizes that he still loves me despite my illness. Experiencing this and the many other caring acts of service he executes has contributed to how stable and entrenched I feel within our marriage. Our relationship has strengthened beyond any expectation I had on our wedding day.

  1. Initial Idea: When I’m resting in my recliner on a bad day, I get to watch the birds outside.

Real Treasure: While sitting watching the birds I have discovered the art of mindfulness, slowing down and staying in the moment. Learning this skill has had a huge impact on my life in terms of reducing my stress levels, and creating more space in my mind to accommodate more helpful and meaningful thoughts. Practicing mindfulness has become an invaluable contribution toward achieving a much higher level of self-care.

  1. Initial Idea: I now wear make-up (to hide my telangiectasia), so I probably look a little more presentable.

Real Treasure: Funnily enough there has been no change in the way friends and family have treated, supported or cared about me since wearing make-up. I’ve learned a valuable lesson about appearances. Certainly, I feel better about myself if I like how I look and this increases my confidence, which is nice. But I have learned that it has changed absolutely nothing about how I am loved by the most important people in my life, and understanding this actually increases my self-regard so much more than liking the way I’m looking on any given day.

So, there we are, readers. It is possible! I’m sure there are more treasures to be found, so I think I will continue my hunt and keep adding to my small collection. Looking through my shiny new gems has lifted my spirits.

Things feel better today.

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.

4 comments

  1. Janelle Cruz says:

    Kim,

    First of all, WOW!! You said EVERYTHING I’m feeling today. I woke up in a lot of pain. Showered and I’m still not moving well. I hate pain meds, but I had to take one this morning.

    I also worked a job that I truly believe has been my trigger for this disease. I was a book keeper at a chain grocery store. I physically had to count and handle the bills every day. I truly believe the ink on the bills is what triggered my systemic scleroderma.

    I got my diagnosis in August 2011. But I truly believe I had it long before that. I also had an Aunt with systemic scleroderma. Unfortunately, I do not know how it affected her other than her shoulders and hands. I think she passed from heart failure, but I’m not positive.

    Thank you for the idea of finding a blessing in this horrible disease. You have made me think twice about my day!!

    Hugs,
    Janelle Cruz
    Colorado, USA

    • Kim Tocker says:

      Hi Janelle, thanks for your message. It is so good to hear from other Scleroderma sufferers, there are many things we have in common, the most important being our overall struggle with this disease. The idea for the “Finding the blessings” column was certainly a novel one and quite a big ask, but I’m pleased I gave it a go, it’s quite surprising what I find once I start really thinking through things. I’m glad you enjoyed reading it. Hang in there in your struggle with this awful disease…and do add me on Facebook if you would like to, I truly believe in those of us who have Scleroderma sticking together and supporting each other. Warm hugs.

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