This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Summing Up About my New Friends

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Introducing people to Arthur, Lou and the rest was for a purpose. No, I’m not the “oh poor thing” comment, or sympathy and a perspective. It’s so that people know. Understand. Comprehend.

When I first started to get diagnosed with the illnesses when I was 15 I didn’t let people know. I don’t like pity or sympathy or people to treat me differently. If you come from a country town, you’ll understand the sentiment behind wanting to have some privacy when it comes to the personal things. So most people I know don’t know these things about me.

I was very sick for about 3 years after the first time I met Pat. Bedridden at many times. Walking stick whenever possible. I gave up my constant concert outings. Lost my rep as a regular ‘Scene Queen’ at some of the bars and clubs in town. There was no more ‘running around like a headless chook’ with unlimited energy, and often my friends were told to be careful not to knock in to me lest they pout me in hospital. Most of my spare time was spent in bed with my hands cramped in to aching claws.

I found it embarrassing as there was little I was capable of doing on my own, so my reliance on others grew tremendously. My seeming allergy for the sun meant that even in Summer is was nestled under a massive sun hat and cardigan. There is something so heart-wrenching about not being able to open the door to the bathroom or fill a water bottle without assistance. Half the appliances in the house had to be adjusted for little old Jessie.

Lately, as I have begun to recover, it doesn’t seem so hard to let people know about my difficulties. Recovering was a pretty long and hard road, and it is not something many people can get through as easily as I did. I am hoping that more people will learn more about the more common illnesses that people suffer from these days, and therefore understand how to help someone close to them that is sick.

Also, this gives me a chance to be more honest with the people I am close to, that may have seen me suffer one day and not know why. Sadly, now I am well and so my experiences and recommendations for helping others don’t seem as genuine as they could. These days it feels like the only residual impact my illnesses have left is a paranoia in my folks that this good streak cannot last long and so I now get to carry a pepper-spray, and shark horn, and SPF 100+ Zinc cream, and extensive emergency contact list.

But if one person can take some good examples and positive energy away from reading these, then getting sick won’t seem like such a bad thing.


Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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