Managing Invisibility

As an adult I have had to learn how to manage having an invisible disability. Living with mental illness is challenging at the best of times. It requires an inordinate amount of self-awareness. Understanding what it takes for me to be well — a combination of sleep, exercise, medication, therapy, coaching, boundaries around work, and social connection — has taken me years to get ‘right’. For the most part, my anxiety and PTSD are episodic. That means that even when I am doing all the things ‘right’, I can can still have periods of being ‘unwell’. 

For me, the Invisibility of it has often felt so unpredictable, so insurmountable. 

But now I have a daughter who is learning to manage her own invisible disability. A perfect little girl. Smart, kind, wildly empathetic. The kind of human that will one day change this world. Much like me, my daughter self-contains all day long: internalizing every comment, every side glance, every wrong answer, every time she is not picked at school. Each action adding to an already very full bucket. By the time she comes home - back to her safe place - it only takes one small drop for that bucket to overflow. 

For her, invisibility of it feels so isolating, so overwhelming.

Her superior containment skills mean she can’t access the limited supports available within the school system. She is lost in a system that is seemingly stacked against her. Apparently destroying classrooms or classmates would mean that she could actually get attention. Outside of school she is bounced around a broken health care system. We are still trying to get a proper diagnosis and treatment plan after three years.  

The invisibility of it is robbing her of her innocence. 

As parents, we continue to advocate for her. Most days it feels like a full-time job. We are constantly in search of more help. Help to educate ourselves; to teach our daughter the skills she needs to manage her mental illness; to reduce my anxiety; to bring calm to the chaos in our home; to preserve our marriage; to protect our other daughter… All of this on top of managing my own mental illness, my family, and my job. 

For us all, the invisibility is exhausting. 

But I can’t afford to let it get the best of me. As her mental illness progresses, the stakes are too high. It isn’t just about me anymore. She watches my every move, feeds off my energy. I need to teach her not to be ashamed. I need to try normalize our life (even though some days it feels completely fucked). I can’t let her battle the self-stigma I have wrestled with for years.

So being invisible is not a choice.