My phone rings and it’s a family member on the line saying, “Hey, I am right by your house, I am going to stop by and see you!”. “Great, of course I want to see you, see you soon”, I say. My heart sinks into my stomach and panic has just set in. When you are chronically ill, it’s hard when someone wants to “stop by”. I have openly shared with all my family and friends – please, if you want to come check on me or pay me a visit, you must give me at least an hour ahead of time. No, it’s not that I am trying to make things difficult for you or make things complicated. This is just an important rule I had to put in place. Also, please don’t think it’s an excuse because I don’t want to see you. It has everything to do with me and very little to do with you.
The truth is, I need some time to put my life in order. 100% of the time I don’t have a bra on, my hair isn’t brushed, I might not have even brushed my teeth yet and its 4-o clock in the afternoon. There are things I don’t want you to see.
It’s not that I am hiding things from you. I just rather you not think my life is falling apart, even if there are times that its true. You will think differently of me, I know it.
If you come unannounced, not only will you see me a mess but there’s a large possibility the house is out of order too. I try my best to never go to bed with dirty dishes in the sink but if I’m in a flare, that sink might look like no one has touched it in a week. Yes, I have husband but sometimes he is too busy working and trying to take care of me and our dogs.
There might be to-go cups I haven’t thrown away because I’m in too much pain to move. Empty water bottles and things everywhere.
You might question why I’m sitting in the dark. I don’t even have the TV on and I’m just sitting here in silence. You are going to worry and think I am depressed; in which I might be.
No, it’s not always like this. But it happens often. I am not thriving, and some days are harder than others. There are days when I don’t have the energy to shower or wash my hair.
I simply don’t want you walking in on this. I don’t want to see your judgement written all over your face. I don’t need it. It will get done. Things will go back to ‘normal’ but not today. The important thing to understand is that my body constantly fluctuates, so does my living conditions. If I feel good, the house is great. If I am flaring its best you don’t come over.
You will always find my bedroom door closed. Why? Because on a bad day, I didn’t have the energy to make my bed. My nightstand looks like a crash cart at a hospital, and the image will cause you to worry. I don’t need nor want anyone to worry about me. And I know if I saw this at someone’s home, it would cause me to worry. What you won’t understand is that it doesn’t look ‘normal’ to you but unfortunately this has become a large part of my new normal.