Living with an invisible condition is maddening. You look normal and ok most of the time, but you're not. You can be totally fine one moment and unable to do much the next. You feel crazy, you feel like you're letting the world down, and you just want to be normal.
Here are a few things that I would like those of you who are lucky enough to not have an invisible condition to know.
I am my biggest and worst critic.
I often look in the mirror and wonder if this inability to move right and/or think straight that pops up out of nowhere is all in my head, especially when all tests so far have come back "within normal". I think to myself, if I just wanted it badly enough, I could make my brain or body work. It's not true. I truly can't make things work that refuse to, but I want to make them work. I feel like the biggest let down to those counting on me, and I would do anything to be "normal", but I am not. I struggle with feeling less than, and I want to be what I was before. I mourn the loss of who I was as I work to accept who I am now. It's a hard process, especially if you don't have support, and even if you do (like me).
I need you to believe the best about me even though things are different.
Unless you suffer from or have suffered from an invisible condition yourself, you will have a hard time accepting or even understanding all the changes that take place in the life of someone with an invisible condition, and believe me when I say that I am kinda glad you don't "get it". However, I need you to trust in who I was. That person is still here. The person who was there for you when you needed someone, the person who helped out when she could, the person who volunteered for things, the person who joked and smiled and wanted to go to that event - I'm still that person. I still want to be there in any way that I can, but that isn't always possible now. It may seem like I'm "always" saying no to things, but I will say yes when I can. If I am saying no or cancelling last minute, it's not because I hate you, don't want to, or am trying to get out of something, it's because I truly cannot do it. Believe the best about me - that I will be there in any way that I can for you - because that's what a true friend is and how I roll, and it's what I choose to believe about you, too.
I probably won't ask for help even when I need it.
I am working on this one. I feel like I'm letting you down by not being able to do the things I used to be able to do, so I will probably not ask for help with the things I'm struggling with, too. I will make appointments whenever I can on days that I know won't interfere with my husband's work schedule so that he doesn't have to miss work. I will take a week to do a project that should take an hour simply because I don't want to burden anyone else. I even have a special to-do list for days when I am feeling capable and will leave those tasks until those days (no matter how badly they need to be done) simply because I don't want to ask for help when I know you're already busy, and partly because I need to know I can still do things on my own.
If you can't tell I'm having trouble, that's on purpose.
I work very hard to look normal. I try not to use my cane, even if I could benefit from it. Every day I have to choose to find joy, and I look for it. I scour God's Word for encouragement, I surround myself with people who will pray with me and for me, I hum uplifting hymns and songs, I play and laugh with my kids as I'm able, and I find ways to encourage others. If my condition is truly invisible to you, I've done my job. Life is too short to live in the darkness. I choose light, and I choose to "bloom where I'm planted" whenever I can. I fail sometimes, and I can't always look "normal", but I will do my level best to do so!
This isn't everything, but these are the main things.
Maybe you have more questions or are curious about something - feel free to ask via commenting below or via email. I'd rather you ask than assume. :)
Maybe you are wondering how you can help me or someone like me who is struggling with an invisible condition. I know you can always pray for me and lend an ear when it is needed, and I know you can do that for anyone in a position like mine. Kindness goes a long way, too.
Invisible conditions are hard, and they are even harder alone. We need all the support we can get, and I hope I can count on yours.