So SAD

I’ve written before about suffering from Seasonal Affective Disorder. Every year I hibernate, stop going out, stop writing, stop reading – just eat and sleep and snap at people over trivialities. And while this year is no different – I keep stuffing my face with chocolate, going to bed two hours earlier than usual and falling out with family members on a weekly basis – I’ve noticed an addition to my symptoms this year:

An overwhelming feeling of sadness.

It’s weird that having something called SAD, I’ve never particularly felt sad with it before. Moody? Sure. Lacking in energy, filled with self-loathing and totally uninterested in anything other than binge-watching old episodes of Arrested Development? Naturally. But sad? No, I’m too depressed to be sad.

For those who don’t suffer from depressive illness, allow me to explain the difference between depression and sadness.

Sadness is an emotion, a feeling, like joy or fear. You can feel it in particular locations in your body, and it provokes a visceral physiological reaction – a sinking chest, a trembling lip, tears. It is transitory and ephemeral, and stimulated as a reaction to something going on in your life – a death, a rejection, a painful memory. It comes in a rush, can be incredibly intense, and then goes away again, without leaving a fingerprint in your soul. That is sadness.

Depression, on the other hand, is a mood – an ongoing, long-lived, debilitating way of life that pushes down on you and pervades your entire body, mind and spirit. It’s not a feeling but a way of feeling. There are no ups and downs, no bursts of colour, just an ever-present gloom. It exists irrespective of what else is happening in your life, and though it is sometimes less pronounced, it never truly leaves you, a shadow that lurks in the recesses of your being and stains all that you’ll ever become. That is depression.

If sadness is a thunderstorm, horrible and exciting, depression is an endless grey sky, without wind, without rain, and without the prospect of ever seeing the sun again.

Which is why it’s odd that this year, this gripping, all-consuming sadness keeps creeping up on me and washing over me, stopping me in my tracks.

Contrary to the philosophy underpinning Cognitive Behavioural Therapy that the ancestor of every feeling is a thought, this feeling only comes when I’m not thinking at all. If I’m doing something that requires even the slightest modicum of brainpower, I’m fine – at least, as fine as I ever get. But every time I stop or do something so routine I don’t even need to think about it, I get hit by a wave of sadness.

It works like this – I’ll be watching the kids play, making sure they’re not killing each other, and all will be well and good. I’ll walk into the kitchen to make myself a coffee, flip on the kettle, and – BOOM! – I’m sad. So sad.

Or I’ll be doing the shopping, or driving the car, or playing with my kids, and the moment I stop, this dreadful sadness slaps me across the face. So I keep active doing word puzzles, watching game shows on TV, completing online quizzes so that I’m constantly thinking. Whenever I stop thinking, that’s when it comes – this feeling that I’m going to burst into tears.

People have suggested my antidepressants have stopped working, that I should go see a doctor. I can’t imagine why that would be the case after fifteen years on them. Besides, I saw a psychiatrist around eight or nine years ago to ask him that very question, and he said that you don’t build up a tolerance to SSRIs, needing to up the dose to receive the same effect. No, he said that depression just happens to be one of those things I have to live with.

And besides, sadness isn’t depression, so why would antidepressants control it?

I just have to wait for the spring again, even as it gets harder year on year. And hope that these thunderstorms will go away and leave me with my overcast sky.

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An open letter to the Mental Health Community

Dear doctors, psychiatrists, psychologists and other Mental Health professionals,

As somebody who accessed Mental Health services for much of his teens and twenties – and, depending on the person that I saw, was variously diagnosed with clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder and emotionally unstable (borderline) personality disorder, and prescribed all manner of antidepressants and mood stabilsers – may I begin by saying that I have nothing but respect for your profession. It is a very problematic and stressful area of medicine in which to specialise, and much of your work is more an art than a science. I am therefore fully cognizant of the pressures under which you work, and the difficulties that you face on a daily basis.

It is therefore with the best of intentions and sincere regret that I feel I must bring to your attention an area in which you could be regarded as failing in your duty of care. This is in the provision of services to adults with autism, particularly high-functioning members of the community, to whom your behaviour often amounts to nothing less than a flying kick to the balls – with both feet. Allow me to elucidate.

When I was working through my various (mis)diagnoses and battling the side-effects of my numerous sedating, mind-numbing and libido-crushing medications, I very helpfully had monthly reviews from a psychiatrist and weekly sessions from a counselling psychologist, such were my mental health difficulties. Indeed, they provided a measure of stability in an otherwise chaotic and trouble-filled life.

It was a little disheartening, then, when upon being diagnosed with Asperger’s Syndrome at the age of 28, I was immediately discharged by the Community Mental Health Team because ‘autism isn’t a mental illness’, and handed over to the Learning Disabilities Team, who said that ‘we have no services for high-functioning individuals’ and immediately discharged me also. This was ten years ago, and in all that time I have had no further input from the Mental Health Team or Learning Disabilities Team.

This makes me wonder, therefore, if you think that my clinical depression, major depression, cyclothymia, dysthymia, bipolar disorder, and emotionally unstable (borderline) personality disorder were merely symptoms of autism, rather than separate but co-existing mental health conditions, or if you thought that all of my problems with mood, identity, anxiety and depression would simply vanish alongside the diagnosis of autism? Surely, you did, else it would have been unethical to discharge somebody who had been receiving mental health treatment for over a decade without ensuring they were fully ‘cured’ and no longer needed mental health input.

To make it absolutely clear, I am wondering whether you think that having autism precludes the possibility of a person having mental health difficulties too? Because that seems, to a layman, a little like washing your hands of people who need help simply because you can pass the buck and attribute all their problems to autism.

Allow me a further, more recent example. My wife also has a diagnosis of autism and we have two children. Of late, her mental health has deteriorated quite badly, which has had a deleterious effect on our marriage and my ability to support both her and our children. In brief, her moods swing like a yo-yo, from hateful and aggressive and irrational to childish and giggly and equally irrational, and back again in the space of ten minutes; her OCDs mean she spends five hours an evening searching for things she has lost; she misremembers what has been said, or makes things up and believes them; struggles to differentiate fantasy from reality; at times seems out of control; is paranoid about people conspiring against her, then contacts others to conspire against me; continually empties her bank account buying pink plastic toys for our girls (eight dolls houses, seven push chairs, fifteen pairs of shoes); sabotages everything good that she has going for her; asks me to move out and take the children and then tells me she can’t live without me; is suffering the worst confidence, self-esteem and anxiety crises of her life; shuts down and retreats into her own world if she cannot handle things; and is worrying all her autism-specialist support workers, who have seen her behaviour first-hand and believe it to stem from some mental health disorder underlying the autism.

Now, to get my wife to acknowledge she has a problem has been tantamount to climbing Everest, but with much help and support from Children’s Services, who are equally concerned about her, and the Health Visitor, who similarly agrees, we managed to get her to attend to an appointment with her GP. She was accompanied by her Autism Support Manager, an expert who has known her for ten years and says that her behaviour is not normal and not consistent with autism. Her GP agreed that her behaviour was very troubling and, given the impact it is having on our marriage and her ability to look after the children, made an urgent referral to the Mental Health Team to have my wife assessed.

I have been castigated by my wife’s family for seeking help, for talking to people outside the family, for being honest. They told me I have betrayed my marriage, I am going to have my children taken away, everything is my fault and I should never speak to anybody about anything, but I have done this through a genuine desire to save my marriage, to get my wife help and make things better for her by giving her access to the wonderful abilities of Mental Health professionals such as yourselves. I was sure that you would be able to help.

You can therefore imagine my horror and disgust to receive a letter from the Mental Health Team saying that, after receiving the referral, they had ‘discussed’ my wife’s case and decided she doesn’t have any mental health problems and therefore doesn’t need to be assessed and has been discharged. Clearly, then, you think that OCD is simply a side-effect of autism; rapid mood swings are a side-effect of autism; irrationality and self-destructive behaviour are side-effects of autism; paranoia is a side-effect of autism; depression, anxiety, low self-esteem and low confidence are side-effects of autism; and everybody who knows her and suggests she is suffering mental health problems is simply wrong, because she has autism and that trumps all. Indeed, I imagine that if she was hearing voices, or believed she was the Queen of Sheba, you would attribute that to her autism also. I would therefore like to ask: exactly what does it take for Mental Health professionals to see somebody with autism?

In society, those of us on the autism spectrum suffer a great deal of prejudice from people who see us as a label, a walking, talking diagnosis ripped from the pages of the DSM, instead of unique individuals. It is appalling that we must experience this same stigma from the Mental Health Community, who really ought to know better. Just because we have autism doesn’t mean we don’t also have mental health difficulties, and certainly should not give you the right to decline to see us simply because we have a developmental disorder to which you can ascribe all our problems.

I know that money is tight in this age of austerity and it helps your budget to fob off people with autism to other, less appropriate departments, but you might like to ask yourselves whether discriminating against an entire section of society – many of whom are struggling with various mental health disorders and very real distress and anguish – is right, or helpful, or fair.

In summary, I have sought your help because my wife’s mental health has been deteriorating, but you have refused to see her because you have decided all her problems are concomitant with a diagnosis of autism, placing the onus on me to hold this family together without your specialist assistance. I can only hope that her mental health does not continue to decline to the point at which even you can’t ignore it.

Warm regards and best wishes,

Gillan Drew

[UPDATE: The value of persistence]