Invisible illness

This is the second time in my life that I have had an "invisible illness".  

The other day I apologized to my childcare worker. I have been hibernating in my room, barely coming out to say hello. I just couldn't bear to face anyone or anything: my children, my husband, no one.

I started getting nervous that she was going to get another job as she has taken on more hours in the mornings when I might need her. Anyone who has kids knows that finding a good childcare worker is like finding gold. You hold them dear and dread to hear the words " I found another job, I am giving my notice". Even when I was healthy, it was a large task--interviewing tens and tens of girls trying to find just the right fit.

Early on when we had our son we had a several childcare disasters that left us so scared we put cameras in our home (we always told the people that worked with us about this ahead of time). We worked with one woman who I had to help get into a domestic violence shelter. She would come to our house with bruises and lose her money, and show up hours late. The next woman would fall asleep on the couch and lie blatant lies and her hands would shake. I now wonder if she wasn't on benzos in retrospect.

Since then we have been wildly lucky and vigilant about who we have let in our home. They have all been gifts, each with their own personality and specialities but equally important to our family.
Now it's hard. This girl has never known ME. She has never known me healthy or well. This is such a private struggle, such an invisible illness that it would take a certain special kind of maturity to possibly understand the depths of this.

In fact, my nanny does understand. Her own father has struggled with opioid addiction due to chronic pain and she has seen it rip apart her father's health and well being.
So, I confronted the situation straight on, as is my nature, and she assured me she didn't take any of my lack of cheeriness personally. She said she was trying to understand an 'invisible illness'. It is hard for anyone to understand. Why isn't mommy doing more? Why isn't she giving the kids a bath? Why does she need to lie down or be by herself all the time? Why are her eyes red and swollen? Why does she sleep during the day and is up all night? Why is she pacing and visibly in pain and uncomfortable? Why? Why? Why? Ohhh the terror that's why. Ohhhh the burning that's why. Ohhh the insomnia that's why. Ohhh the restlessness that's why. Ohhh the paranoia and agony that's why. Ohhh the pain that's why. Why why why... I ask myself that everyday.

In thinking about my doctor's appt the other day I realize how utterly irresponsible it was for her to say those words to me "This can be permanent you know that right?". For many that would be enough to throw themselves in front of a bus. Just like the vet told us to let go of hope for our little pup, he beat it and survived despite the odds were against him. 
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My first invisible illness was IC. Who sees the burning urethral and bladder? The agony and humiliation that that brings? No one but those suffering.  Relentless pain. And yet I would take that over this ANY DAY OF THE WEEK. YUP.

To all those suffering an invisible illness, I hope we/ you are met with empathy and understanding.  Kindness and curiousity.  Hope and solutions.  Light and love. Inner strength and persistence.  Fight the fight of your lives.