I lay alone on the narrow trolley in a side room in a doctor’s surgery, the door partly open, half fainting, dizzy, sick, frightened, more unable to see than usual. I couldn’t sit up, and when I tried to wriggle – the necessary technique for raising blood pressure – I felt worse and kept kicking things, and was afraid of falling off the trolley.
Outside, I vaguely heard a voice say, “Is she all right?”
And another voice, cheerful, scornful, “Yeah, she’s just mental.”
How do you know? You haven’t checked.
Besides, “mental” is most certainly not “all right.”
To this day, I remain puzzled by my reaction to blood tests. Orthostatic hypotension? Granted, I spend my life trying not to faint, but I’ve never been found to have that particular problem in any other circumstance. However, while the mild symptoms of pre-syncope can be difficult to distinguish from other conditions, there is no mistaking it when it gets that bad. When they finally got me up into a wheelchair, I pretty much fainted again, and had to put my head down: a typical and particularly annoying part of the reaction is that when I am finally able to get up I usually have serious problems again a few minutes later.
Whatever the reason for my body reacting to blood tests like that, it consistently has done so to a greater or lesser extent through several years. To assume a disorder is psychological, because it is not immediately obvious what the physical cause is, is like attributing every medical problem that isn’t comprehended to the intervention of aliens.
Most people with complex problems have had them dismissed as psychosomatic at some point. And when I say dismissed, I do not mean the doctor saying, “look, one possibility is that this is caused by something going wrong with things in the brain you don’t have voluntary control over. I think it is worth referring you to a psychiatrist to see if that’s right and if it can be treated.” I mean people behaving as if you were doing it on purpose and deliberately wasting their time, doctors blanking you out without answers, assuming what you say about the symptoms isn’t really true, assuming that if you have any sort of mental health condition any physical symptoms without obvious cause must be caused by it, assuming that if what you say doesn’t make sense to them it must be psychological – and therefore, not worth any medical effort.
For instance, I have a sight problem which behaves bizarrely and has no obvious cause. Nothing is wrong with my eyes (fairly conclusively) and nothing shows up on an ordinary MRI (this doesn’t prove either a positive or a negative when it comes to the possibility of a neurological cause). However, there are at least seven contraindications to hysteria: (1) age of onset too young (by current medical orthodoxy at least), (2) lack of sudden onset, (3) unintelligibility (conversion disorder usually mimics a socially understood condition), (4) failure of treatment for underlying mental health problems to affect the condition, (5) the experience is wrong – if it was conversion disorder, I’d expect to be able to see but not able to make use of my vision for any conscious task: it’s actually closer to being the other way around, with more wrong with the unconscious use of vision than conscious awareness, (6) this experience fits the pattern of a particular type of neurological fault, and I did not know this until I described it to a researcher into vision, who did not find it odd at all, and (7) I flinch when someone unexpectedly touches my face when I should have seen them coming. On balance of probability the primary condition is neurological.
The same lack of obvious cause goes for most of my symptoms, and I find it extremely difficult to communicate with doctors as a result – because among other things I am often talking to people who don’t seem to believe what I’m saying is possible. That is, I spend most of the time expecting people to switch off, assume I’m not really telling the truth, and as a result of this, it isn’t easy to actually tell the truth. It isn’t easy to say, “yes, my wrist hurts, and so does pretty much every other joint in my body. Oh, I can walk ten miles – it’s just that everything really hurts afterwards. Especially my shoulder. And I also find it difficult and uncomfortable to eat, and keep making myself really sick on tuna sandwiches. And I keep falling over when I try to turn round. And I keep losing my balance when I’m standing up. And my feet won’t come up properly when I walk but if you press down on the top of them they are completely sound. And I can’t tell properly when I’m thirsty. And my vision is like looking through a waterfall anyway, but I keep getting things which look a bit like an migraine aura, such as little flashes of light. Oh, and I can’t comprehend anyone speaking when there is background noise. And I can’t control my voice properly. I never get the volume right and either I’m inaudible or I shout. But they tested my hearing and there isn’t anything wrong with it. And this shoulder is going really crazy and hurts twice as much as usual but there is no loss of flexibility. Yesterday it was my right hip that was doing that. Though I did lose flexibility that time: I couldn’t actually put my toe in my mouth as a result. And I have short term memory problems and I’m really struggling with that. And mild tinnitus. And noise hypersensitivity. But only to some types of noise. And mild photophobia. And I have all these weird hayfever/skin allergies. I used to be able to detect feathers in a duvet by my physical reaction to it, but that one seems to have gone off. And I keep getting these random sensations – like stabbing pains, and pins and needles, and like insects walking all over me. And I tend to sit with my feet turned in and they’re rather an odd shape (they are, but probably nothing pathological – though it worries me because they hurt). And I seem to have a fatigue problem – I seem to be exhausted after doing nothing very much. I get really tired trying to sit up. I can’t maintain a good posture at all. And I usually get presyncope when I stand up. Or if I roll over to sleep on my back. And I have chest pain. On both sides in slightly different places. And everything that doesn’t actually hurt is really uncomfortable. Oh, and surprise, surprise, I’m rather depressed and anxious.”
Kudos to my current doctors: they did ultimately work it out. HSD/hESD or similar. A genetic fault in a protein that’s found all over the body resulting in complex multi-systematic issues. And the fact that they thought (probably rightly) that I have problems which are psychosomatic didn’t cause them to stop looking for a physical cause for some of the other issues. But most doctors have completely switched off before I get to the tuna sandwiches.
It seems to me that there is a set of layered problems when it comes to “psychosomatic” and its kindred phrases. The first is the way people tend to attribute anything they don’t understand to “psychosomatic” problems, by which they often really mean “unreal”. This was very apparent with the episode I had after that blood test, where the nurses kept going on about how they needed the room for another clinic. Um, yes, what do you expect me to do about it? Get up and faint properly on the floor so you have an excuse to call an ambulance?! This attitude leads to a failure to investigate symptoms properly.
Secondly, “psychosomatic” is a sort of wastebasket taxon. It isn’t something that is diagnosed because there are symptoms characteristic of it and none that aren’t. It is something that is assumed whenever what the patient says doesn’t make immediate sense, doesn’t fit the patterns of the common causes of such symptoms. The more so if you are depressed or have a history of mental health problems. It tends to be assumed that the mental problems are causing the physical ones, not the physical ones the mental ones, and this is further confused by the fact that with something like HSD/hEDS, there may actually be structural differences in the brain that give you more of a tendency to depression.
For example, I do actually have seizures, distinct from the fainting, which probably are caused by complex post traumatic stress disorder. It is impossible to be completely certain that it isn’t atypical epilepsy or one of the rarer causes of fits. But, in this case, contrary to my visual problem, there is positive reason to think this phenomenon has a psychiatric cause. (1) I have a clearly diagnosed condition which is well known to cause catatonic seizures. (2) The seizures match the biologically expected pattern: i.e. they are rigid, wavy flexibility, locked-in fits, which usually happen only when I’m both emotionally stressed and also trying not to faint. A lot of vertebrates have a last resort predator defence of some form of catatonic state. It seems to be a way of avoiding eliciting a further hunting response from the predator, and of causing the predator to release their grip, allowing escape. In CPTSD, the threat response system in the brain misfunctions (for instance, memories do not process properly out of the amygdala), and this seems sometimes to result in this catatonic state triggering in a disordered way. Because low blood pressure is something that could also result from having been significantly wounded by a predator, it is logical that it should be part of the set of conditions that caused this mistaken response. (3) Doing things that should help, such as getting up and walking gently about, and reassuring myself that I’m safe, and trying to control any other symptoms like flashbacks, or simply leaving the situation, does seem to help. As does treatment for the underlying disorder.
However, this is the same logic that would be applied to any other health condition. It isn’t, as I said before of most things attributed to psychosomatic problems, like attributing what is not understood to the intervention of aliens. It is using the same process of scientific logic as is usually used on illness to work out what it is wrong with the body.
Psychosomatic illness? Yes, in that the cause of the problem is psychiatric. Physical illness? Yes too. My body is misfunctioning on the mechanical level in a tangible way.
The third problem with the way in which psychosomatic is used in modern Western medicine is that it tends to be “diagnosed” by doctors who are not sufficiently expert in the field to tell the difference between a physical problem they don’t understand and the real physical symptoms caused by a psychiatric illness. This is in part due to the extent to which mental health is not really treated with sympathy or given its fair share of resources. Conversion disorder should only be diagnosed by doctors with the right expertise, just as much as something like EDS, heart conditions, or rare forms of throat cancer.
By the time I was agitating for a diagnosis of what was wrong, I was sure I had problems over and above the CPTSD. This is mostly because the problems were getting worse while the CPTSD was, in its clearer manifestations, getting better. It no longer made sense as an explanation.
I went to the appointments regarding the possibility of connective tissue disorder prepared to deal with the dismissive response that I’d previously had from a neurologist, which fortunately I didn’t get. There are at least a lot more things that can actually be observed than there are with neurological problems: for example, that I am hypermobile can be seen by anyone who knows what they are looking at. They don’t have to rely on my description of the experience.
My plan in case of blank dismissal was to say as calmly as possible: “does this mean you think that what I have actually got is conversion disorder?” And if the answer was affirmative, to ask why they thought that. And if they gave an answer amounting to “because I don’t understand it” to protest that this was not really an adequate reason. Then, if I could not persuade them to look more deeply, or if they did have a positive reason to suspect a psychiatric cause, to finish with, “then could you refer me to a psychiatrist? Or at least strongly recommend that the GP does?” This would prevent the situation stagnating, of carrying on with a vague dismissal, but no clear knowledge of the real problem. Whether I would have got anywhere, given the lack of resources for mental health, I have no idea. I’ve also come across quite a few people saying that they were still having their physical symptoms dismissed despite a psychiatrist saying they didn’t have conversion disorder.
However, it would have been an attempt to put whatever the illness was back on the map of scientific medicine, taking it out of the realm of aliens.