This post has been in the drafts folder for a while. It’s been a tough one to process and write. It has been done in a completely different way to my usual “stream of consciousness” posts. I’ve been working on processing my diagnosis since October. Recently lots of things have been coming up that have elicited some big feelings. I think I’m fortunate not to be an expert on grief. I’ve not had to suffer a lot of it in my life. I’m truly grateful for that. I’m also just working my way through things the best I can as I grieve.

The consequences of a lifetime of not trusting what my body was telling me.

Being a good girl

I’ve been thinking a lot recently about what happens when you are told that you are making a fuss when you’re a kid. That other children don’t have extreme reactions like you do. That you need to dull your responses to excruciating stimuli in order to be good. To stay small. To follow the rules.

When the smell of the kitchen at school lunch makes you nauseous but you know that you should be grateful for the hot meal. Good girls are grateful.

The realisation that getting wet in the rain doesn’t make other children miserable but not being able to tolerate a raincoat.

Good girls don’t climb trees with so little regard for their personal safety. Swinging in the springy branches with their eyes closed.

All the information coming at you at the same time. You can’t decide what you need to pay attention to so you just block it all out. Honing that ability came in handy as a teenager. Telling myself the gnawing in my stomach was a sign that I was strong. Holding out against feeding myself in order to be good. To stay small. To follow the rules.

Being a good Mum

Knowing that good mothers breastfeed on demand and rock their babies to sleep. And being able to do that if I sacrificed everything else that a good wife does. Always teetering on the edge of overwhelm trying to balance competing priorities. My deep love for my children the only thing holding me together until they went to bed. I could escape people wanting to touch me. Now craving the physical contact of distant teens and grieving that it was so hard when they were small.

Grieving my ability to sing as I ignored the acid reflux that burned my vocal chords. Easier to blame myself for purging than to look to the side effects of the progesterone injection I was having. The grief of a lifetime of self blame over the loss of an opportunity to do the one thing I loved beyond all others and the recent revelation that it wasn’t my fault.

Tolerating a body I didn’t understand

The lack of recognition of a body that has loved and borne two babies and a hatred of what was left. But a complete inability to do anything about it. Teetering on the edge of overwhelm all the time meant there was no resolve left and no ability to create the habits required.

What developed was a disconnect. A body so used to being ignored that it gave up trying to communicate. Breaking down with autoimmune disease and lighting up when I discovered cold water swimming. These glimmers almost unnoticed. I’m learning to blow on the embers now and try to hear what they are telling me. The grief of realising that I don’t trust my own body. That its messages are confusing because they often disagree so strongly with the people around me.

The amazing revelation that in limiting the number of people around me I could hear it. I could start to listen and stop putting it in so many situations that were hard. Rest was a huge part of this. Healing my jangling nervous system so that I could even quiet the noise enough to think straight.

The consequences of not having the support I needed.

Not knowing I had support needs led me to a deep belief that I wasn’t worthy of support. That trying harder would get me to where I wanted to go. And it worked. Until it didn’t.

Crushed on the wheel of effort and unable to understand why my peers could breeze through things without much effort. I knew what they knew and couldn’t prove it. Unable to cope when the one thing that came so naturally to me was gone. My voice literally in shreds. My hard work was all for nothing. The crushing failure of returning home after such a heady victory of my place at university was unbearable.

If I had some executive functioning…

I hadn’t understood, nor did anyone around me, that I had such difficulties functioning as an adult. Trying to survive in a flat away from home with no support network of halls of residence or pastoral care from my establishment. I couldn’t budget, cook meals consistently or balance my workload. Things like booking a practice room and then knowing what to do if I actually managed to remember I had done it. Finding it in the labyrinthine corridors was utterly beyond me. Yet essential for success. I had advanced higher English but struggled to know how to write an academic essay. I was so ashamed that I didn’t ask for any help. My beloved violin was stolen as I forgot to lock it into the chain system in the storage area.

The grief I have over this lack of support still chokes me twenty five years later. The shame that I should have been able to do this was so great. The cost to my family to send me were so high. I couldn’t bear the pain of letting everyone down and I didn’t know it wasn’t my fault.

The pain of this almost broke me. Despite having appointments at the local psychiatric hospital nobody gave me any insight into the fact that I wasn’t entirely to blame. That I hadn’t tried hard enough. I was medicated higher and higher until I broke completely. Screaming in the main road in my pyjamas in the middle of the night unable to cope with the night terrors that plagued me. Seizures and depressive episodes that had me fleeing in the night while smiling and getting married. Doing all the things that good girls are supposed to do.

It would be another twenty five years until I got the information I needed to make sense of this.

The next couple of posts will cover some of the other things I am learning as I go through this process.