I honestly believe that people suffering with invisible diseases are the best actors. I can only speak to my experience, but 99% of my day is spent acting. Considering that I work with 24 hyperactive 4th graders Monday through Friday (7:30-4:30), I am ALWAYS EXHAUSTED.
“Morning Joe! How’re you?!”
(“Do I say that I feel terrible and just want to go home?”)
“I’m well! How’re you?!
By the time Friday evening comes, I have an extremely difficult time thinking of anything other than hitting my bed. This feeling usually doesn’t go away. More recently, any time that I have off from work is spent sleeping—and I don’t mean taking a cat nap. I often come home around 5-6pm on Friday and sleep until 12am. Then I’ll go back to bed within the next 2 hours and wake up at 6am to feed and walk my pup…
Following Casper’s walk I may or may not take a moment to eat—I usually make a cup of tea and just go right back to bed until 1-2pm. I’m sure you get the point. This is the best picture of my weekends that I can paint for you. Occasionally I’ll feel some motivation to go out to dinner, but that motivation often fades within a few hours. Because of this, I also have a hard time making plans. Why be a flake when you can just not commit?
On the rare occasion that I let my guard down and share how I really feel, I get the generic responses:
“Oh man, I hope you feel better…” (“Thanks…”)
“You’re always tired?” (Yup…”)
“Did you take pain killers?” (“3, and I’m on my 2nd dosage for the morning…”)
“Did you get enough sleep?” (Is there such a thing?”)
I know that all of the people in my life have the best intentions, but the reality is that it feels as if there isn’t anything that anyone can do to be helpful.
Still, I continue to pretend. Pretend that “I’m okay”, pretend that “I’m invested”, and pretend that “I’m present.” When you spend the majority of your life lying and pretending, it just becomes second nature. I’m not so sure if this is more beneficial for myself or for the people in my life, but either way, it is what it is.
I know that this definitely isn’t the easiest way to make it through the day, but I encourage you to do what works best for you. If you have a strong support system of friends and family who are patient and understanding, definitely lean on them during those really difficult and discouraging times. While I have a solid support system, I can also be a very “strong and secretive” person. If you’re like me, someone who tends to keep things to herself, I encourage you to try walking with me as I work on opening up to those I love. Perhaps a listening ear every once in a while can make a difference…
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If you know anyone suffering with Lupus and/or any other “Invisible Disease”, please feel free to share with them directly!
4 thoughts on “And the Award Goes to…”
My mother in law is suffer lupus for about more then 15 years and I could see her battle everyday just trying to be ok and fitting everyday is hard but ,I hope you feel better joezette for sure is hard but still fitting beautiful we love you and pray for you Brianna and I♥️🙏🏽!!
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Thank you so much Marilyn, I really appreciate it! The day to day is extremely challenging but we have to remain faithful and take care of ourselves. God is good 😊 Please continue to pray for me. ❤❤❤
Awesome Josette!! We need voices like yours to start a support system for many of us who suffer discreetly. Its an encouragement knowing that one is not alone.
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This is my goal Auntie Earnestine! To really encourage others and just provide a support system.