Sibling Jealousy to Sibling Love, Because of Scleroderma

Amy Gietzen avatar

by Amy Gietzen |

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As a child, I constantly felt like I received the short end of the stick. In my immature mind, my older sister was praised up and down and showered with gifts, and my baby brother was cherished as the first male child who could do no wrong.

Being the middle child, I felt I wasn’t perfect, like my older sister. Nor was I the first son. So it left me feeling stuck. And then there was the fact that I constantly broke furniture and bones, along with having selective hearing. I was not a great follower of the rules.

I remember a holiday when I poked holes in all of my mom’s freshly baked homemade pies that were prepared for family and friends. When my father asked why I did it, my reply was, “They needed help in the decoration department.”

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When as a teen I started to complain of aches and pains, my parents didn’t take me very seriously, and rightfully so. I once told my entire first-grade class my dad was in a plane crash because I was mad. He traveled for work.

As you can probably guess, my family members didn’t take me very seriously, even as I grew into a young adult. But after what seemed like months of complaining about my wrists being sore and sensitive and my hands turning blue in the cold, my parents either got sick of me complaining or wanted to prove their point.

On Feb. 15, 2001, accompanied by my dad, I went to an orthopedic doctor for a consultation. As we waited to be seen, I think we both secretly were nervous. Joking about crazy scenarios has always been our way of taking the edge off, so we did just that. Later on, I learned to lean heavily on my humor to lighten my situation. I believe this appointment was my initial experience of putting that into practice.

When we were finally called back, my nerves seemed to crackle around me. The doctor went through my history and symptoms. He ordered X-rays and had me raise my arms as high as I could above my head. Then he asked me to reach behind my back and intertwine my fingers.

At the time, I felt his requests were extremely odd. Looking back now, I know they were astute observations of my body.

With the testing and exams complete, he sat me down and said matter-of-factly, “Ms. Gietzen, I believe you have a form of scleroderma.”

At first, I didn’t take him seriously. I had no idea what scleroderma was or even how to spell it. However, when he proceeded to tell me scleroderma would not go away and was difficult to treat, I began to feel like the walls were closing in on me.

The feeling of my life flashing before my eyes crept in. All of my goals and dreams seemed so far away.

I left with a scrap of paper in hand with the word “scleroderma” printed on it. The car ride home was one of complete silence and reflection. As I looked out the window watching the houses go by, I absent-mindedly rubbed that slip of paper in between my fingers. I wondered what I did to deserve this outcome.

Was I being punished for not being an obedient child? Or was it simply the luck of the draw that made this scenario mine to live with? Either way, I secretly felt that I was being penalized for something I did.

As the years passed and I learned through lived experiences with scleroderma, my anger and feelings of punishment subsided, but never fully expired. At times I’m still furious about my life’s outcome. However, I’ve grown to embrace my circumstances.

Among those are my sibling relationships. When we were kids, we constantly got on one another’s nerves. Now as adults we have made it a top priority to invest time and energy into building a lasting relationship, and in a weird twist of fate, scleroderma has aided us in forming a bond that can never be severed.

My sister helps with things I struggle to do, like painting my toenails and curling my hair. My brother, who is now 6-foot-2, has become my human grabber. He reaches things I can’t and opens jars and boxes I struggle with.

I know these things may seem trivial to other people, but for me they have exponentially improved my daily life.

I’ve concluded that being a middle child has its up and downs. But had I not been the middle child, I wouldn’t have the same type of love and support from my siblings. My life has been unexpected and unpredictable, but ultimately worth living with them at my side.


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, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Joan Krajca-Radcliffe M.D. avatar

Joan Krajca-Radcliffe M.D.

I am SO impressed that you got a diagnosis of scleroderma from your exam by an orthopaedist! Why? Because I am an Orthopaedic surgeon who has had Raynauds for over 35 years, assorted upper and lower GI problems, and even anti-centromere antibodies (that no one ever addressed), and a history of autoimmune thyroid disease and autoimmune hemolytic anemia (hence the antibody panel testing). None of my orthopaedic training or fellowship taught or even acknowledged the condition of scleroderma. I finally had bilateral lower leg aches with calcium deposits on my tibias and in my hands, and a rheumatologist put more of it together for a diagnosis, but she had no scleroderma patients in her practice and marveled at my calcium deposits and telangiectasias. I am now followed by a scleroderma specialist at an academic center for all of the problems, unfortunately now with testing for heart and lung manifestations as well.
You have a much more severe form of scleroderma than I do, and I hope that your earlier diagnosis by your orthopaedic surgeon helped expedite your treatment. It took me another 35 years to get a diagnosis and coordinated treatment, even though I was an orthopaedic surgeon (but obviously not trained in autoimmune/rheumatologist diseases as well as your orthopaedist.) I really enjoy your writings and wish you the best in your work, traveling, and living. Thanks for sharing your life experiences.

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Amy Gietzen avatar

Amy Gietzen

Joan, WOW! What an amazing study you have! Thank you for reading my article and in turn sharing your diagnosis journey.
It took several years for me to located and acquire my medical team of specialists. However I’m not sure if my diagnosis at a young age and fast treatment has helped my outcome but I like to think it played a role!

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