[image: mast cells, stained]
I am aware that more days than is usual have passed since I last posted. And I haven’t until recently — until lying in bed last night — been able to get my head around my lack of focus.
The truth is, I have been in the middle of a world where something is wrong — to do with my health — and I don’t know what it is.
I don’t do well when I don’t understand something physical about myself. I quickly lose confidence in my bodily sensations: do I really feel this? did this really happen? Etc.
This time I knew I was spacing out when I had to speak to my husband to confirm what questions I was going to ask the doctor when they rang. We had to rehearse my questions. Because although on one hand I knew my symptoms were happening — on the other, I didn’t know if anyone would believe me.
No one will believe me.
It’s not a big leap to get to why this situation is so hard, in Child Sexual Abuse terms. As I have spoken about elsewhere: as victims we are forced to repress instinctive responses like pain, revulsion, fear. Our fight or flight mechanism resorts to shut down, disassociation — and shame, guilt, avoidance.
What most of us do feel in some way however is that something is wrong. That this isn’t right. This shouldn’t be happening. But we are helpless. We are children. And all around us, all we see is that no one is doing anything to help. So what is happening must be okay.
As an adult, for me, I am able to manage illness or disability when I am able to figure out what I think is going on. Those of you who know me also know that I once I get an idea of where things are headed — I’m a dog with a bone. I have advocated for my children (both of whom have chronic conditions) numerous times. I pursued a good surgeon for my hip operations. Etc.
But this illness has been different. It started in January — waking up at night, coughing, choking. Like asthma gone mad. It is quite debilitating. We tried to get to the bottom of it, but every time we tried something and symptoms went away, they marched right back. Then in mid-March I got Covid-19. This layered on top of my chronic chest issues made for a bit of a mess. Two courses of antibiotics and a course of steroids later — the symptoms continue. Sigh.
Just this week I am becoming convinced that my lung issues have their root in mast cell activation — like a way-over-the-top allergic reaction. But one that can’t only be controlled with antihistamines. Like most people who present with mast cell issues, I have a bunch of other stuff going on too, and have done for years, ignored to the best of my abilities: shocking insect bite reactions, mounting food intolerances, increasing allergies to medical adhesives. Etc.
All of this however falls into the realm of ‘uncertainty’. Mast cell things aren’t really diagnosed with ease, and most doctors aren’t clued up about the possibility. It’s certainly a thing, but it’s not a clear cut thing, with obvious treatments. Unless you happen upon a knowledgeable doctor. Sigh again.
There is another factor here, which just adds to the ‘is this all in my head?’ problem: victims/survivors of sexual abuse are more prone to illnesses rooted in inflammation (which is mast cell), and more prone to developing auto immune conditions. We also need more medical care in our lifetimes. These are facts, the sources of which are numerous. Here is one.
As survivors, we can’t do anything about the ways our bodies keep the scores of abuse. But the manifestations of this score-keeping are so various, so often nebulous, that we can be forced back upon our default thinking, which is something is wrong (with me). Accompanied by no one will believe me.
Which is what I have been battling with in my head for the last ten days. I know this is real, but all I can really say is that something is wrong. When I am faced with trying to prove it, I run aground and lose confidence. Who will believe me?
I am tired of all of it, frankly, of trying to bolster myself and be certain, to somehow be more believable. I long for trauma-informed care, for someone to help me and take over and say gee we know this is hard for you. We believe you.
So far though, I’m on my own. I’ll persevere, but it’s a challenge if I’m honest. I’m mired in uncertainty, and the fear of no one listening.
This now from Learning to Survive. It’s a painful memory. Who would ever believe that something was wrong? We need to stop abuse — so children are never in the position of not even believing themselves.
The three of us kids might go into their bedroom, where the television is, and watch something.
He is still in bed, even though it’s late.
Only now do I realise that these particular memories must be Saturdays, and that in the UK [my stepmother] has probably taken [my siblings] to school. However it happens, there are some mornings when no one else is home.
He asks me to rub his back. He asks me to sit on him. He moans. Then he suddenly turns over, laughing, underneath me, and I can feel his hard penis right between my legs. See how much I love you? He is smiling.
I am 12 years old. I cannot smile back. I cannot do anything.
Once, someone comes in and he rolls me over, pretending to wrestle.