The thing I fear most is being misunderstood.
I wonder if my kids feel like I'm letting them down. While there are many days when I can
work through exhaustion, depression, anxiety, or pain, there are other days when I can't. They bound up to me with their flushed cheeks and boundless enthusiasm and ask to go to the park. I'm learning to say "no" when I can feel my body and brain breaking down, but I still feel my heart wrench when I tell them I can't do it. I want to explain how I feel, so they know it isn't because I don't want to. But there's no use- I don't want to burden them with worrying about things they can't understand.
I wonder if my friends think I'm a flake or that I don't care. I think about all of the invitations I've turned down or calls I didn't have the bandwidth to make. I want to tell them how I always want to connect, but simply living a day can mean there's no way I can be "on" enough to be anything other than a drain.
I wonder how my husband isn't mad at me for all the times I fall asleep on him or how he handles the mental slumps I can hide from the kids but don't have the energy to hide from him. I want to explain how much effort goes into making dinner, or how there are days when I don't want to be touched because my very skin feels bruised.
I wonder how I'll be perceived by the public when I say these things. I'm afraid to voice all of this lest my parenting is doubted or people think sharing these struggles means I am miserable all day. I want to explain how I can be in pain or feel low and still be happy with my life; how I show up with intention even though I don't always have the same amount to give.
I say all this because there are those of us with invisible illnesses who are always misunderstood. We apologize for doing our very best, and we minimize how hard it can be to simply exist. It is embarrassing to be transparent because we know how often our feelings are misinterpreted as excuses.
While we may not want to talk about it, I think we have to speak up for the sake of each other. We need to create spaces where we don't have to pretend to be fine all the time. So here is a place to say what you want to say without being judged or misunderstood. Whether you want to comment or not, know that you aren't alone and that so many care about how you feel without even knowing who you are.