I have come to the conclusion that there are certain things and situations that one is not able to comprehend unless they experience it first- hand; like being a mother or a father, the only child, the oldest child, the middle child, the youngest child, like being in a complicated relationship, or living with a chronic illness.
“I knew you were going to do that”, that is what my sister said to me after I called her and told her I decided against going to my youngest sister's birthday bash, that was to begin at 10:30pm and end at 2:30am.
I found myself to be offended.
Offended, because I thought that during all the time that we had been spending together she was beginning to understand the force of uncertainty that has consumed my life since Lupus chose to rear its head.
Not enough explaining can ever cause her to understand or anyone for that matter, what it is like to live with this autoimmune disease, unless they have experienced it first-hand.
I have found myself always having to explain to every third person why I am not working, why I cannot remember our recent conversation, why I’m hot in the middle of winter and my nerves keep jumping in my eyes, forehead, lips, why I can’t bear to be around smoke, and my heart rate increases without excitement, and etc.
I guess my expressions are too negative for the optimist ear. If I state anything about my circumstance that isn’t “positive” then it is complaining.
Then I’m a complainer.
When we are outsiders we have to be very careful when assessing someone else’s situation.
As an outsider you have to be mindful of what the person maybe going through, what exactly they are living with and how it all affects every aspect of their life.
You would never know it by looking at me; I appear to be healthy, physically well.
But the truth, as devastating as it is, I’m not well.
I’m living with a chronic illness that gives off no warning of a flare, an outbreak, and that has the potential to be fatal.
I could go on and on and give specific details of my experiences, but I wouldn’t dare depress myself any further.
Even though I stated earlier that there are some situations that one is not able to comprehend unless they experience it first-hand, that doesn’t stop me from wishing that my sister along with others understood.
I often get the impression that others along with my sister think that I hide behind excuses.
I get this impressions because of the sighs and write offs, and the comments of its just lupus, when I’m unable to or just don’t have the energy, but only if they knew.
I may appear to be well.
I may laugh, joke, and smile.
I must do these things for the sake of my sanity and emotional stability.
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