For World Mental Health Day I did a scary thing. I posted two side by side pictures of myself. One, with out make up, hair wasn’t done, etc. The other, my hair and make up were done and I was wearing an outfit I was proud of. I wrote about the pictures saying, on the left I have a brain injury and mental illness and on the right I still have a brain injury and mental illness. The post was scary because I try to not ever show myself with out some make up. Not wearing make up feels like depression to me. So do sweatshirts. They invoke times in my life where I cared so little for myself I did not try to do anything to help my apperance, so I didn’t. Many people told me I was brave and had come so far.
Here is the thing. The picture on the left, the picture of myself in all my crazy sleep hair and TBI headache glory, I took this morning. The picture I took that everyone assumes was a past me suffering, is the most current me. The pictures were not a side by side of how far I had come. The pictures were a side by side of it does not matter what I look like, the brain injury and mental illness are true every day of the week, and still true if I look good enough to be on Instagram.
Having a mental illness means that early on, I learned how to pretend to not have a mental illness. I was told and learned how to perfectly cover up the fact that I have panic attacks, depression, suicidal thoughts (and attempts), that I have PTSD, an eating disorder, a self-harm addiction. No one saw any agony and were shocked when I finally opened up about how I actually felt all the time. ‘I had no idea, you have always been so happy and smiling and supportive of everyone’ became the mantra everyone threw at me once they learned.
I have the same automatic response to my TBI. I cover up migraines, feelings that my brain has a terrible sunburn, that it feels like someone has pumped air into my skull, that my entire body aches in a way it never has before, my tired is full on exhaustion that I’m not sure I can walk to my bed, that noise/light/crowds are too much to process, that I tip over. Like my mental illness, I am only in public on the days I am sure I can make it look like I do not have a TBI. So I do not go out in public often or for very long, and am very good at smiling and laughing and being a happy shiny person. I can do this for a few hours using energy I do not have. I then fall back into my dark house and nurse tears of the pain and exhaustion I am in. The day after is complete Hell. I spend all of it a complete shell and barely able to function, so for now I know I can not do social things two days in a row.
I am a record on repeat these days. Every time I discuss openly about my TBI it is met with disbelief. Even for some of the people I have opened up with, think I am exaggerating or lying. It is really hard to get people to understand mental illness. It is almost impossible to get people to understand an uncommon invisible diease. At least with mental illness, most people have or know someone who suffer so they have a referance. With my TBI, and because it is so new, I keep getting asked: if I feel better, when will I return to work, how great it sounds to sleep 12 hours a day, I must be bored, what do I do all day, why didn’t you show up to x/y/z, why aren’t you doing more for this person.
It is so hard to get people to understand and believe me. It is also insanely isolating. No one really checks in, my friends assume I am just socializing with someone else, people think I am flakey or not sucking it up enough. I spend soooo much time by myself. I enjoy being by myself however I also enjoy being around people. I know my limit though, by 7:00pm I am crashing hard and that is when most things start so I no longer have the option of participating. Going to a coffee shop during the day is hard as well, there are a lot of people around and my love for reading is currently too hard for me to do for very long at the moment.
I have faith that eventually things will improve. Maybe if I keep speaking up more people will start to understand that this is not a thing that is going away. I have and will continue to have very different limits than I use to all of my life. I can not perform at the same level that I was able to even a few months ago. This is a terrifying and maddening thing for me to sit with. I can only imagine how it is for the people around me. They do not live with it, wake up and go to sleep with it, everyday so their acceptance of it will be slower than my own. We all remember how I was before and it is going to be slow learning for everyone to understand I am no longer that person. I hope that we all can continue the conversaion. That the assumption about my life does not continue with out any knowledge of the truth. My cover does not define my book.
