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Invisible Friend

I used to believe that everything was fixable (if that's a word) one way or another. When I was very young, it seemed that my parents could solve any issue that came my way. As I got older, it was other people who sometimes had to fill the role of fixing things.


I was content with this theory that everything was fixable until my illness came along. Lupus isn't fixable. Instead, it's more along the lines of figuring out how to manage life with a new partner of sorts.


You have to learn a new routine, adapt to the partner's habits, master the art of how you communicate with each other, and still keep your own space or identity.


Living with an illness like lupus, however, has a bit of a twist when it comes to this partner analogy. Yes, I had to find a new routine to incorporate my medications and appointments. It isn't always easy but is it something I could figure out for the most part.


Lupus doesn't seem to have a set of habits that are easy to follow, but I do know when I've pushed lupus too far.


As far as communication goes, we are still, after all these years, trying to figure that out. Lupus rarely speaks at a typical volume, either it is a whisper to faint to hear or loud yelling (flares).


I refuse to be defined by the illness. This allows me to keep being me for the most part. And since lupus tends to be invisible to most people, I treat it a bit like an invisible friend who never goes away.


Have you figured out how to live with your illness? There are several methods to use to help you get there, such as support groups, therapists, medical teams, and friends!

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Profupus
Profupus
Dec 28, 2019

I believe that when we can understand how our conditions behave for each of us as individuals, we have a power to work with, rather than against, the condition. If I were much younger, I might think that by learning to consider my condition as my best friend, it would be my own super power.


Depending upon the age of your daughter, there are different ways to have her engage with learning how her condition responds to her emotions, energy expenditures and such. If she's young enough, scavenger type hunts or BINGO works well for learning the triggers.

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Dr. Bhagat
Dr. Bhagat
Dec 27, 2019

Love this!! I have told my daughter that if she learns to treat her condition like her best friend, she will learn to respect and honor it. If she ignores it - the triggers, signals and auras - it will get upset and control her.

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