As we live our life and age we supposedly learn what are called “Life Lessons.” I’m not quite sure what these lessons have given me. I am still, at age 51, in a quandary regarding most things that life throws at me.
One thing that has haunted me for a while now is whether or not I am a good person. Being chronically ill changes the way many people view you. I have for a long time now come to terms with my illness. I have accepted my limitations.
What I cannot come to terms with how this thing “Lupus” has tinted the picture of me. How others view how I go about my day is the dilemma. Why should it even matter? But it does. Big time. And it hurts. It hurts almost as much as this illness does.
At least twice in the past month I have had to defend myself to those who lack any understanding. It has occurred to me that for the past two weeks I explain, rationalize or even better justify how I am living my life, And, it sucks.
No one knows better than I do how much my life has changed since “the diagnosis”. No one grieves more than I do for what (as my dear friend Loretta calls it) “Ms. Lupus” has taken from me.
Yes, the difference in me is remarkable. I am not the same as I once was. And, as many times as I try to explain it, I am not the same woman (wife, mother, sister daughter or friend) I used to be.
So why does it hurt so much when those who are unaware berate me on the subject of what I do not do.
Consequently I have become acidic. Not because I am ill but for the reason that I am discouraged having to constantly spell out that I am sick.
Those who live their lives with a chronic illness understand what I am trying to say here.
Having to explain why I cancel plans, yada yada yada.
As if I had a choice to become sick. As if there were a list of things presented to me and I chose to be ill.
Those of you who cannot understand what goes on in my body on a daily basis please stop berating me. It hurts. And, just so you understand something I not only have Lupus I have Rheumatoid Arthritis, Hughes Syndrome as well as many of the other crap that goes along with auto immune diseases. Again, I need to quote Loretta and say....... I am not complaining, just making a statement of facts.
Please take a moment to read from some of the following websites.
http://www.butyoudontlooksick.com/the_spoon_theory/
http://www.womenshealth.gov/faq/lupus.htm#11
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