Living With Pseudo-Syncope
Hello!
Those who know me personally will know that I had my first appointment with the specialist in my condition of Pseudo-syncope yesterday and have finally been referred to get treatment to cure it so, I decided to dedicate a post to explaining exactly what it is and what it's like to live with it.
So, what is Pseudo-Syncope? It's a condition that is basically a form of extreme disassociation. When the body comes under stress e.g. heat, fatigue, anxiety, lack of food etc. the brain essentially "switches off" the nervous system which subsequently causes a collapse and a paralysis. So, I am totally aware of what's going on around me, I can hear and feel everything, I'm just trapped in my own body. The problem is that it looks almost identical to normal fainting and quite often I call it fainting to make it easier to understand. However, if you look carefully, you'd notice that I collapse differently to someone who is having an ordinary faint. I learnt yesterday that this is because my brain begins to disassociate with my body in a particular order. My hands and feet go first so I'll drop whatever it is I'm holding, then my legs can't support me, then my body, and lastly, my head. A normal fainter would just fall to the ground having blacked out so wouldn't look as graceful if you will.
I developed the condition when I was 17. Looking back, I think it was because I wasn't eating enough, I was putting myself under huge amounts of pressure to perform in the rowing team that I was part of, I was leading up to grade 8 music exams in 3 areas, and A levels were stressful. Back then, I would collapse up to twice a day and could be down for up to 30 minutes at a time - I can tell you, being unable to respond to anything for that length of time is so boring. Over the past three years, my condition has improved massively and is only happening around twice a month. Hopefully, the treatment will mean it won't ever happen, or only once a year.
Now we know what it is, I think I'll share what it's been like to live with the condition for the past three years. For the first year and a half, it was bloody awful. I'm going to be completely straight up with you here, people are arseholes. A lot of the problem is that people just don't know what this is, although it's apparently more common than you'd think. I think the most difficult time was being at school. I was made to feel like I'd somehow chosen to have this, that I was falling off my chair in lessons for attention, that I was deliberately drawing attention to myself. Have you ever fallen head first off a chair? If you have, chances are you wouldn't choose to do it again. There were times when I was literally locked in the nurse's office having collapsed in a concert rehearsal and not allowed out. I was a drama student and we had to go and see live performances as part of our A Level. Quite often I wouldn't be allowed to go because I presented "too much of a risk". Luckily, my step dad intervened and took me along to the performances himself. I was made to go home every time it happened despite being totally fine after waking up so I missed more lessons than I could count. At times it felt like Edinburgh University would never be an option for me. I mean, I was being told that I would be a distraction to other people and their A Levels, but apparently my own A Levels didn't matter. My parents battled with the school all the way, I objected where I could but it soon became a kind of rule that I wasn't allowed to object. So, all in all, my last year at school was grim but I pulled through my A Levels and here I am.
Outside of school, everyone suddenly turned into a doctor. I mean this lightheartedly as I know people only want to help but you would not believe the number of people coming up with conditions that I "most definitely" had despite not displaying any of the relevant symptoms! Guys, if you don't know what someone has, don't start labelling all the various conditions they might have and for God's sake, please don't argue with them when they politely tell you they don't have that particular condition. I suppose the silver lining of the wannabe doctor approach is that they actually believe something is wrong with you. The other camp of people are the ones that accuse you of lying; that because it's not a condition that they recognise it must not exist. In fact, I got that so much that I started to wonder whether I was lying myself. Though trying desperately to move my fingers and not being able to despite screaming at them inside to move proved that I definitely wasn't lying.
When I got to university, things improved dramatically. I didn't collapse for four months and we believed it must have stopped, except then it started again. The specialist told me that the brain will only disassociate to that degree when it's safe to do so i.e. when you know the people you're with. It would seem that I didn't collapse at university until I was comfortable with my surroundings. It really is an odd condition. For that reason, I've been declared safe to drive because my mind would be too focused on driving the car to think about anything else. Not only did the collapsing slow down but people were far kinder. The university has never once suggested that I shouldn't do things, there's just a message that is sent to all my tutors explaining what I have and what to do. My friends were understanding and always did the right thing. It was such a lovely change.
So, what should you do? First of all, do not attempt the recovery position. I know they teach you how to do it in school but from my experience, nearly everyone is terrible at it. I've had a fair few times when my shoulder has nearly been dislocated or one of my arms has turned blue and begun to throb because my entire body weight was on top of it. And one glorious time when someone made such a bad job of it that my arm was leaning on my windpipe and I began to choke - there is nothing scarier than not being able to breathe and not being able to do anything about it. Next, accept that I can hear and feel everything, talking to me and making me laugh breaks the disassociation because the brain is broken out of it's situation of stress. And that is literally it. Even if the person doesn't have this condition, I have always said that you should assume that they can hear and feel you. People can be so rough with unconscious bodies and it's not at all necessary. Be gentle. When someone is rough with you and you can feel it but can't resist, it's the worst thing and I seriously wouldn't wish it on anyone. Plus, if you assume they can hear you, you will be able to stay calm as you can focus on talking to them. Always make sure they can breathe as well.
The main problem I've had with this is that no-one seemed to know or understand what pseudo-syncope is. Hopefully by reading this, you'll have more of an idea. And really, it doesn't matter what the condition is, if you don't know what it is, listen to the person who has it. Don't assume they're wrong.
I think I'll stop now but I will update you all when treatment starts and when *pinches self* I get to start driving!
Lots of Love,
Sarah xxx
