I’m posting this here because I think it might be useful to someone. As I may have mentioned before, Fibromyalgia is strongly linked to PTSD and in my case I’ve come to accept that it’s true. I’ve posted this elsewhere very privately to a few friends. This is the first time most of this will be seen publicly, and I’m doing this anonymously because I’m not ready to talk about these things or to make it common knowledge amongst the people I now know, in my regular every day life, as will become clear later in the post. If you know who I am, I ask that you keep the information to yourself. If you’d like to comment on this post, please feel free. If I don’t respond, it’s because I’ve had trouble getting online lately and I’ll respond when I can.
Monday morning I went to see a rheumatologist, a really great doctor and his really great resident, actually, who has determined that my inability to focus and my near constant exhaustion of the last two months is caused primarily by sleep apnea and who has subsequently ordered a sleep study for which I’m not sure my insurance will pay.
They were so great, actually, that my guard was down and I completely forgot how sneaky doctors can be. So, in the 500 questions that the resident asked me about myself and my health, I didn’t even notice this one:
“So, do bright lights, loud noises, or odd smells ever bother you?”
I laughed. “Oh yeah. All the time. Especially smells. I can smell ANYTHING.”
I can’t believe I laughed! I can’t believe that I forgot that’s a question they ask to determine if you have PTSD. I’ve read enough that I know the right answers. I know to answer “rarely” to “have you ever overspent and suffered serious consequences as a result?” in the bipolar disorder questions. I know to answer the “have you ever thought of killing yourself” depression question with a wry grin and “not in a very long time” –because, you see, you can’t appear too perfect. It’s the semblance of rueful honesty they buy, ushering me out with a friendly hand on my shoulder–no need to make an appointment but call if you need me–with the understanding that, of course, I won’t need them because I’m really quite sane.
So, I laughed at the PTSD question. And then he asked some more questions about why I might have PTSD and I tossed off the old chestnut, “I was raped in my 20s. Long time ago. I’m over it.” But I hadn’t rehearsed it. I wasn’t ready for it. It didn’t work this time.
He asked me about my family and I told him a few things–stupidly intending to demonstrate that I’m the sane one.
“You can see, can’t you, that there might be some mental health issues?”
I nod. I want him to give me Xanax or something that will just give me room to breathe. I’m treading strange ground here. I’d never relaxed that much before. Fatal mistake.
He left. I couldn’t put on my clothes yet because the doctor was coming to discuss my case with me. The resident popped in after I’d been sitting in my little gown for for a while with a clipboard, though. “How about you fill those out while you’re waiting?” with the air of giving me some busy work, keeping me from being bored.
Sneaky bastard.
Fucking bipolar list again.
Fucking depression list again.
Fucking PTSD list again.
I started answering them. And then I put it down. Two chairs away. Poked it with one finger.
Fucking clipboard.
Started crying. Looked out the window a lot. Deep breathing. Stretches. More breathing. More stretches. Pretty trees in the courtyard. The cars look so small.
Went back to my chair. Picked up the clipboard. Started answering questions. Started writing little notes in the columns. “This question is imprecise. I cannot answer it as it is worded.” “This question doesn’t address any real issues.”
Put it back down. Two chairs away. Poked it with a finger.
Realized I was seriously scoping out places to hide.
The corner of the room behind the little ell made by the changing room. They wouldn’t notice me, but I’d have to stand. I can’t stand for long periods and being found crouched on the floor would send all the wrong signals.
In the dressing room then. Except then I’d have to pull the curtain and pick up my feet to avoid being seen, and really, they’re very nice people. Why in heaven’s name wouldn’t I just smile politely and leave with the friendly hand on my shoulder? Besides, if I pulled the curtain I wouldn’t see them coming.
Back to the window. More stretches. More breathing. Pretty Trees. Tiny cars. Went and sat back down. All this time, every time I sit, I sit with my back to a corner and I’m facing the door, turning my body to do it and I don’t realize until just now. I’m not letting the bastards get behind me. No fucking way.
Looked at the clipboard. I just won’t fill it out then. They can’t make me. Realized tears are still leaking out of the corners of my eyes.
They’ll know something’s wrong. It’s the rules. You’re SUPPOSED to fill these things out.
Picked it up. Started answering questions.
Knock on the door. I put the clipboard back down. Two chairs away.
“Come in.” I squeak. Clear my throat. But they’re already coming in. I don’t get a second chance to say it right.
The resident picks up the clipboard. “All done?”
I laugh, shaky. “That was hard.”
“It was?” He is concerned, apologetic.
The doctor introduces himself to me. A very nice man. Funny. I make a joke about my fear of authority and he tells me with a nod that he understands, gestures to his pristine white coat, “White coat syndrome. That’s why I don’t wash this. It will be brown soon.”
We both laugh. The resident smiles. He’s nervous.
The doctor gestures to him, “Go ahead. You start.”
The resident says, “The patient presents as a 44 year old woman with…”
“Daily Grinding” the doctor says.
The resident nods and clears his throat. “Mrs. Grinding is 44. She presents with….”
I want to hug him. He’s such a nice boy. He does fine. They talk about the possibility of Sjogrens. Possible but they’ll follow that up only if it’s not what they really think it is, sleep apnea, which could be doing all kinds of things to my brain and body I had no idea about. I’m temporarily fascinated with the whole conversation. They’re putting on a show for me, including me in a conversation they’ve probably had many times before. Treating me like part of the team. Like watching the reflex test as if some time my knee will go a different direction, I’m always fascinated by new information and how things–my body–work/s. The tears have mostly dried.
“Tell me about this trauma.” The doctor responds to my raised eyebrow, “The PTSD.”
A rheumatologist told me that I have PTSD and that he couldn’t help me. He wouldn’t do anything.”
The doctor nods. I can’t tell if it’s because he thinks that doctor was a quack (I certainly do) or not. It’s thoughtful. Sympathetic.
“Why did he say so?”
“I was raped in my 20s. It was a long time ago.” The damned tears, not too far back anyway, are starting to leak again. I flick my eyes up and away to keep them from falling and realize I’ve broken the second sane rule. The rules are, in case you didn’t know them, don’t cry when talking about rape. Appear matter-of-fact. Don’t avoid eye contact. Tell it like you’d tell that the garbage men were late. Distasteful but unimportant. The quack told me that. He thought I did pretty well. He told me that while sitting all the way across the largest exam room I’ve ever been in, his arms crossed, leaning back–closed and uninterested body language, detached voice. I’d learned the lesson. I try to recover.
“I don’t find it as traumatic as my childhood. That was… I was raised in a very…” I raise my hands in a circle, ” …very insular family. Don’t trust authority. Don’t talk to people outside of the family about family business. We moved a lot.” I can tell nothing’s clicking. That bright moment of attention that occurred when I said “rape” is gone. He’s nodding, but he’s already decided. “Life outside of that was nothing like we were led to believe. It’s not…. It was much more traumatic than the rape.”
He nods.
He orders the sleep study.
I ask him about anxiety. He tells me to go see a psychiatrist. He’s convinced I have PTSD. He didn’t say it before. He’d talked to me about anti-depressants and anti-anxiety meds before we talked about the trauma.
Fucking clipboard.
I go out to the waiting room, to my husband and my youngest baby. I go home. I flip-flop between gaiety at the family around me and dinner in front of the TV with a silly movie on (a rare occurrence in our house) and those damned tears that won’t stop leaking. I don’t let anyone else see.
And then the fucking Open Source Boob Project appears (note: if you haven’t seen anything about this, you’re probably not reading many blogs or aren’t into fan or science fiction activities. Google “Open Source Boob Project”). That barely pings me, no, it’s all the comments. All the brilliant, right, honest, beautiful comments, and all the posts about the comments, and all the links I follow and follow and follow until I’m reading about a girl who had blacked out and was fucked by her boyfriend while blacked out and she called it rape, and I said, “Oh.”
I tried to comment and couldn’t because I was crying and if I commented I would have to be honest about the shameful, horrible, embarrassing, all my fault events…..a man I’d been dating, with whom I got drunk, who started while I was blacked out, who kept going when I woke up because the pain was so intense that I started screaming and begging him to stop, who said he couldn’t. It was too late, who repeatedly banged my head against the wall with the force of his thrusts, snapping my head to the side over and over while I begged, and who later accused me of lying about being a virgin until that night. Who is my oldest son’s father.
Of course, I’m crying. And my husband is here. And he loves me. So it’s not until this evening that I tell him I was triggered while having sex with him…. “It was very short!” I hasten to add. I tell him the doctor didn’t believe me that my childhood was more traumatic. I tell my husband about sitting on the living room floor playing with toys, maybe 10, 11, 12, somewhere in there, while Dad is watching the news and Mom is making dinner, and some story comes on. I wasn’t listening until I heard my mom say something like, “Well, that’s what she gets for parading around in mini-skirts, getting drunk in bars, walking home late at night by herself” and I listen, and it’s a story about rape gone unpunished.
I tell my husband that I have never told my parents I was raped. Even though their attitudes have changed, they’re older and wiser now, I have never told them, because whenever I think “I was raped” I think “that’s what she gets.”
I wonder out loud, as I’m telling my husband these things, if the doctor would have regained that same glint in his eye if I’d given him an example, like being forced to drop my pants and lay across my bed at the age of 14 while my mom beat me with a leather belt until I was bleeding and screaming how sorry I was. For reading. Even though I hadn’t been. Because she’d tried and tried and tried and I just didn’t listen. Nothing got through to me.
I tell my husband, even though I don’t mean it, that maybe I should have told the doctor how my father told me he would never love me again, never respect me, that he’d read my mail and my private journals that were in the trash at my house waiting for the garbage men, who were late, that he knew things about me but he wouldn’t tell me what he knew because he wanted me to wonder, and that he had an unregistered gun, and he put it in his truck, and he was coming, he was coming to find me and kill me for taking his grandson away from him, and that only my mom talked him down. “If it weren’t for your mom…” the implication being that I’d be dead and he’d have gotten away with it. That his grandson would be back where he belonged and all would be right with the world again. The loathing in his voice would have been hard to express. The anger. The grief.
And I wonder now why it would be okay to tell the doctor, or at least strongly imply, that I was abused as a child. I knew when I thought it, when I made that circle with my hands, that I was trying to game the system. I was trying to say without saying that we lived like the children of alcoholics even though there wasn’t any alcohol in our house. That there was abuse. I wanted the doctor to believe that bothered me more than rape but the tears had derailed me. Because that’s what she gets. Because decent adults don’t blame the child? Probably why I knew I wouldn’t tell him about my father wanting to kill me. Because that’s what she gets.
So, let’s be honest here since there’s no system to game. I’m still triggered by both. I am afraid my mother will read my business blogs and realize what I believe (I’m disturbingly liberal and knee-jerk right wing for them) and I’ll be disowned again, as I was when I got pregnant with my oldest. As I was when I finally moved away from them when he was 10. I do something, I write something, and I hear my father’s voice telling me that he’ll never respect me, never love me. That he was coming to kill me with an unregistered gun. Those panicked moments happen more often than suddenly freezing up during sex because I’m in the wrong place with the wrong man and everything smells funny.
I can’t work. I can’t sleep normally. I’m exhausted. I’m in pain. I have been battling a fibro flare up, probably triggered by the terrible sinus infection I was battling, but I think the worst of this is PTSD triggered by a client I had considered a friend who told me to suck it up and do the work he gave me, even though I said I couldn’t, because I had to. Because he told me to. Because I owed it to him. Because I believed in his cause. And that was enough.
I’m feeling much better today. After I posted this to a much more private place, I was told that I’m loved, and worthy of love, and that helped. And knowing what caused the trigger helped as well. My husband always helps, and I’m so thankful for him.
It may seem to you like a silly thing to trigger a meltdown. But being told by someone that I have to do the impossible because they said so, because I owe them somehow, and because I really can do it, that saying I can’t do it is less than nothing, noise to be talked over, because you do what you’re told, even when it’s impossible, and you do it well, is exactly what I dealt with every day of my life for as long as I lived anywhere near my parents. It’s what I was doing when I went back after three days of constant tears and self-loathing and dated with the intention to marry my rapist, because I’d set up expectations. Because I owed it to him. Because I was a virgin and if you’re not a virgin on your wedding day, at least you marry the man you slept with. Until I told him I was pregnant and he asked me “What do you expect me to do?” and then I walked away. But I didn’t walk far enough.
While I was pregnant, I was homeless for a while. When my parents showed up at the hospital the day after the baby was born and seemed to have forgiven me for as my mom put it, “being the good one no one ever thought would do anything so stupid”, I went home with them, and for the next 11 years of my life I tried to be that good girl again, even when my dad read my mail, searched my house when I wasn’t home, walked in on me when I was in case he could catch me at something I shouldn’t be doing, told my son to tell me to stop locking the house because he had a master key, so it wouldn’t keep him out anyway, listened to my mother tell me she hated me and would never trust me, that she knew I would poison her younger children, but that God had told her she had to bring me home. Listened to them tell me I would marry the man they chose for me. Discovered they had made promises in my name because they knew I could do it. Listened to them tell me I was ruining my son by letting him choose his own haircut and clothes. Listened to them tell me that I could do what they told me to do, every day, and to say I couldn’t was a lie. Listened to them tell me that they thought about having me committed. Until the day they said they were going to call Child Protective Services and have my son taken away from me–and who would CPS believe, a single mother or concerned grandparents who were model citizens of the community? And then finally, finally, I walked away, and even though it wasn’t far enough then, I’m still walking.
Someday I will have walked far enough away that, maybe, hearing someone I trust tell me that I can do something that I cannot, because I have to, because I owe it to them, will not mean flashbacks and trying to find a hiding place in the doctor’s office.
