An Ordinary Girl with an Extraordinary Disease

Hello, and welcome to my ordinary girl column.

This is my very first piece of writing, so it makes sense to introduce myself and “set the scene” for what I hope will be a useful and helpful read for those interested.

First, it’s been three years since I was diagnosed with limited systemic scleroderma. In writing this column, I am hoping to share my experience of the disease from the framework of my life here in New Zealand, as a mum, wife, and retired counselor/therapist.

Second, I’ve found my life changed dramatically since my diagnosis.  I’ve always been a  “mover and shaker,” working hard and doing the best job I could as a therapist. I was an energetic mum to our three boys and ran our household efficiently.  Since becoming sick I’ve lost a great deal physically, mentally, and emotionally with fatigue and pain slowing me down.  These days, I conduct my life from a recliner chair in the corner of our lounge!

I refer to myself as an “ordinary girl” — it’s not meant to be a derogatory description. It really just reflects the fact that I’m a normal person who was hit with an unexpected and life-changing disease.

Today I thought I’d share my latest experience, which really got me thinking about other “ordinary people” who are trying to negotiate their illnesses.

A couple of weeks ago I ended up in the hospital for a week with a pulmonary embolism. Hospitals quickly become familiar places for the chronically ill. However, as I sat there in my bed, in a ward with five others, with very little privacy except a flimsy curtain and a gown that kept flashing my nether regions to all and sundry, I found myself thinking, “I hate this, I’m stuck here with all these weirdos and I want to go home to my recliner.”

I know, I’m very ashamed to admit calling the other people weirdos — even in my mind.

The lady next to me was very elderly, deaf as a post, and every time she coughed she then spat into a container and moaned. All extremely loudly, because, of course, she couldn’t hear herself. On two occasions she lost her false teeth on the floor while spitting. Each time this happened she would exclaim her frustration, loudly, in swear words. The man across from me relieved himself on the floor twice, and the lady on the other side was so rude that I cringed any time she spoke to someone.  So, I sat there in my grumpiness and fumed about my roommates.

On the second afternoon, a young man came to visit the elderly lady next to me.  While she was visiting the bathroom he asked me how I was managing with her loud noises and expletives. He went on to tell me that she had become deaf very suddenly through an illness, and was really struggling to cope: “Grandma was an amazing woman before she got sick.  She used to live on a house-bus, and travel around the country, despite being aged 82. She was a very colorful character, loved people, and was quite the wild woman. She really struggles now. She used to love her life so much.”

I came down from my judgmental pedestal with quite a thump — and so I should have.

The next day I learned that the man opposite me had a stroke a time ago, and now couldn’t manage to hold things (including the paraphernalia he was trying to use to relieve himself). He felt mortified about the loss of his ability to attend to his personal tasks, and his loss of dignity.  I decided to talk to the grumpy lady on the other side.  She was almost fully blind, I hadn’t realized.  Being in hospital was very frightening for her because she didn’t know the layout at all, it was an unfamiliar place. She was missing her cat and her home, and all familiar surroundings.

We were all just ordinary people trying to negotiate our lives in the face of chronic illness.

I had judged my roommates without thought or consideration, despite being chronically ill myself! Every one of us has a story, life experiences, and things we have lost because we’ve become sick.  These things are invisible to others, unless we endeavor to find ways to see them. Restoration of dignity, a sense of acceptance, and consequent belonging comes from communication and connection, rather than judgment and bitterness.

My hope is that this column provides a platform to connect and communicate. I look forward to writing my next one. See you all then!

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.