I have a chronic, rare blood disease related to my previous cancers that is fatal without treatment. I face it with grace and accept it for what it is. Talking about it comes easy. I write about it from time to time as it affects my recovery and health. I have feelings around my diagnosis, but it doesn’t scare me, and there is no shame in my speaking openly about it. I am happy to share my journey and how my recovery weaves through it in every way—from treatment to advocacy. It’s easy to talk about illnesses that involve people bringing you casseroles.
Then there is this other thing. Apparently, when I left rehab, I made a secret pact with shame. It would be okay to discuss physical illness, and a smidge of depression would be okay to mention (because everybody gets the sads sometimes), but anything further would be weird. That stuff might scare people off.
Kudos to me for no longer self-medicating and getting help, but nobody really needs to hear the details of my mental illness, right? Recovery is a happy place.
Even the way I talk about the two conditions is different. I say I “have” aplastic anemia. I say I “struggle” with mental illness as if it’s something that snuck up on me while I wasn’t looking and I had to wrestle it off of me. Even my vocabulary paints a different picture. People don’t bring casseroles for the things we are afraid of or don’t talk about.
When it comes to discussing mental illness outside my medical team, I treat it like some rabid animal that’s gotten into the trash can. I wake up to the mess and try to clean it up before the neighbors notice. We all know it’s there, I’m managing it, but still we’re all kind of too embarrassed to mention it. After all, it’s mostly handled and it’s only a problem every so often.
That’s the thing about shame. It isolates. It makes you think you’re the only one experiencing something. Shame can’t survive in connection. Once we hear the words “me too” and we find out we’re not alone, poof—shame’s power is gone.
Yesterday was a very hard day for me. I have complex PTSD with dissociation and have never felt terribly comfortable being open about it. Talking about this animal is much scarier for me. It’s the single biggest threat to my recovery, yet I don’t talk about it much. It’s unpredictable, infrequent and misunderstood. Even I don’t really understand it. When it’s managed, it’s managed well. When it’s severe, it’s severe.
Every time it’s different and every single time it surprises me. It’s been the trigger for every major relapse I’ve had. It’s exhausting and scary and I don’t talk about it with anyone other than my therapist and psychiatrist, because I’m not a combat vet and don’t feel I have earned the right to PTSD. As if there is a level of trauma stress I must reach before I get to feel justified by the damage.
Counseling, research, my own story—they all show me that’s not true. My brain is wired differently now. I respond to things differently than other people. Trauma has changed the way my brain responds to stress.
I want so much to have a normal brain and to look normal and to be able to handle things like other people but the fact is, I can’t.
I’m wired differently. Through genetics and experiences, my brain responds differently sometimes. I don’t have to take the edge off or try so hard to look like I cope like other people, as much as I would like to sometimes. I just have to learn to be ME. To live with this one body I have. To care for it. I no longer feel the need to take things to help me “come down” from my trauma responses or “pep up” from my depressive episodes or take the edge off to make my mental health match everyone else’s. I am learning to manage and care for myself just as I am.
I’m caring for my heart, mind and body, maybe for the first time ever. I couldn’t care for myself all those years ago when terrible things happened. I can show up for myself now and be who I need me to be. I’m proud to take care of this person—she’s strong, resilient, unique and worth it.