I hear this more often then I care to hear it. Its an issue with Auto immune diseases and I am sure anyone with an invisible disease has heard their share of frustrations concerning the inconsiderate comments from uninformed people that believe its just all in our heads.
While the truth is that my rosy cheeks are simply not health related they are in fact related to my disease. Its like blushing when you are highly embarrassed but times 100%, your eyes burn, your face burns and it hurts like hell even being in the sun.
My pale skin isn't because I don't love the sun, I do. I used to be so tan from working out in my gardens and just being outside all the time. I hated being cooped up inside the house. Now I fear going outside on a sunny day for fear of the prickly (more like needles stabbing me all over) feeling all over my exposed skin.
I posted before about my kidney problems; this is a common effect from Lupus. It attacks the kidney's, heart and nervous system primarily. I unfortunately have all of these conditions. My kidney's are failing rapidly, I have had had two heart attacks this year, one stroke, I have fibromyalgia on top of it all which prevents me from even taking a shower some days because the nerve endings are so sensitive that the water beating down on me hurts to the point of tears.
As of late I have had no insurance to get the medical treatments that I require to remain "comfortable". Its what my doctors tell me is all they can do for me now that I can't take many of the treatments because of my nephritis, heart condition and well my psychological predisposition to severe depression. Also add in there sleep apenea and you have a recipe for disaster. I can't take anything with acetaminophen or ibuprofen in it as well as an allergy to morphine and several other meds. I can't win for losing.
The past few days have been horrible, I can barely walk because my feet hurt so bad. I can't craft like I used to be able to do because my fingers won't cooperate. Its depressing and frustrating, I feel like a complete failure to my family and kids.
I do have one person in my life who supports me, wants to learn about this disease and has been there for me when everyone else abandoned me, including my own family; its devastating to lie to them and put a smile on my face when I know how crummy I really feel. I don't want them to worry about me, I care about them so much that I don't want to add to their stress levels by telling them how sick I really am.
Lupus, fibro, nephritis, heart problems, nervous system problems (seizures), strokes and a multitude of other issues often over shadow the pain. My pain medications don't work anymore so I have to make a decision about what to do next to be comfortable. I don't know how long I will remain here on this plane, I look forward to the next one and sometimes wish I hadn't been revived this past summer when I actually died. I know it sounds cold and even selfish; however, I can't help but think that my family would be better off without me and the worry that goes along with the care they feel.