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You look good!
You have colour in your face!
You don’t look sick…the list is endless…
These all should be good things to hear but to anyone battling an invisible you fight a “thanks” out and all the while are hating hearing it. Yes, I don’t look sick but I am. I am sick of justifying that I am sick. When I was told I had Lupus it was a relief, scary but a relief. I had all kinds of crazy horrible things happening to my body that was chalked up to my thyroid for so long because there are over 300 symptoms. Thank you to Hypothyroid mom for getting me through that and fighting my Endoricnologist for a different medication. My thyroid laboratory results were fine but I was sick. I felt like I had the flu 24 hours a day, 7 days a week. No I’m not exaggerating I was sick all the time. I was exhausted, constant low grade fevers, constant nausea, boughts of vomiting and diarrhea, migraines, constant headaches (yes there is a difference) insomnia, fatigue, unable wake up from all of the above. I had a few episodes of going to the emergency room because of dehydration, migraines and persistent vomiting and at one of those trips I had a nurse then the doctor ask me if I had lupus, nope it had never been mentioned (for me) to me as a possibility. Sometime after that I posted a selfie of Ranger and me to their page and was asked via direct message if I had lupus. I knew about lupus, no not because of House because I just watched all eight seasons in February of this year, no it was because my girlie, my youngest child had Anti-DNA antibodies several years prior (still does) and we were told she could get Rheumatoid Arthritis or Lupus. At the time, hubby and I were tested and neither of us had these Anti-DNA antibodies but my daughter didn’t have a positive ANA test. So like every mom, I read about it and I knew what to look for in her but never put the two and two together. I mentioned it to my family doctor and thus began my Lupus Journey.
So why does, “You don’t look sick” bother me? Oh I don’t know, maybe because I smile through the pain, I was dragging myself to work and doing a half assed job at it getting more and more worn down. I constantly heard, “you’re always sick, what’s wrong, why can’t you go to work…?” To them, they saw a tired, lazy, unreliable employee and coworker. Depression and anxiety got the better of me. Anytime I was sick, I had someone come to my house to “see if I was there.” If I was sick two days, then I’d have someone there both days and on the third day they’d need a doctor’s note. The bosses started requesting them on the first day and so the anxiety built up. I never got time to catch up, heal and I always tried to be happy. My personal rules are if I have a fever of 101 or higher, I’m puking, can’t get off the toilet or have not slept, I am not going to work. It’s not safe or healthy to be working feeling sick. So if I was fighting a fever or in the bathroom or not coherent or migraines (but that’s another story) I didn’t go to work. I’ve been off work on long term disability for over a year and a half and I still get physically ill every time I leave the house because I know I don’t “look” sick and everyone that I see tells me so. What started this was three people in one day telling me all of the above, including my own mother. Yes mom, I know you know I’m sick and she’s seen me at my worst and knows how bad it gets when I’m not hiding behind a smile.
My family for the most part gets it. What I show the world on social media or seeing me out on the rare occasion that I’m at a store and I have that smile on my face because I’m hiding the pain, the exhaustion, the fatigue and oh those red rouge like cheeks are because the lupus gives me a slight “butterfly rash”. The cheeks being red means if you see me I probably don’t have make up on at all.
So Yes I Am Sick I just hide it really well because I have an INVISIBLE ILLNESS.
unable to be seen; not visible to the eye.
“this invisible gas is present to some extent in every home”
So the next time you see me, ask me how I’m doing really, how I’m coping but don’t tell me I don’t look sick.
So how are you? No really, how are you? Fine isn’t an answer…
Journey with me … mini2z