I write blogs to share my experiences. When a psychiatrist diagnoses depression, they’re looking for a specific set of symptoms described in the DSM V or the ICD 11 all or most of the time over an extended period:
Diminished interest or pleasure in activities
Decrease or increase in appetite
Subjective slowing down of thought and movement
Fatigue or loss of energy
Feelings of worthlessness
Diminished ability to think or concentrate and indecisiveness
Thoughts of death, suicidal ideation without a specific plan, attempted suicide or planned for suicide.
I understand the need to be able to diagnose in this way but this is not how people experience depression. I’m writing this blog to give some insight to what it’s really like to be inside the mind of someone struggling with symptoms of depression.
In reality, people experience the following, jumbled and apparently nonsensical feelings:
I don’t want to make a fuss but I’m worried about how I feel
I feel sad, frustrated, angry, scared and numb at the same time
Sometimes I feel happy and then I feel confused and guilty
I feel lethargic and then I beat myself up for being lazy
I cry about everything and nothing but then sometimes I can’t cry when someone tells me something sad
I feel completely exhausted, during the day all I want to do is sleep then at night, I can’t sleep, I just lie awake
I’m not interested in going out, I won’t enjoy it and I have nothing interesting to say so what’s the point?
I don’t have any friends and I can understand why, I wouldn’t want to be my friend
I just want this pain to stop, it’s a pain like no other
I feel like I’m falling down a black hole, like my life is meaningless, is there any point?
I’m scared I’m going to lose my job, I just get a feeling I’m doing it all wrong
I can’t seem to do anything right
My life is fine, I should be happy but I feel like everything is falling apart
Life feels like a slog, I don’t think there’s any point in going on
I notice other people laughing and realise I’m not but the next day I can laugh and I don’t know what’s different
I wish I could go to sleep and not wake up
It’s the job of the GP or psychiatrist to take these experiences and attempt to make sense of them to see if a diagnosis of depression fits. A diagnosis is important so that appropriate support and treatment can be given. Symptoms of anxiety, psychosis, personality disorder, obsessive compulsive disorder, eating disorders or other psychiatric conditions overlap so it’s important to understand what the symptoms are in order to offer the right support.
I always like to offer some hope in my blogs. I’m living proof that from the darkest times, if you surround yourself with the right people, do whatever it takes (therapy, counselling, medication) it may not be easy or simple but recovery is possible.
TW – Trigger Warning – this blog contains honest content about weight loss and symptoms of eating disorders. Please consider taking care of yourself and clicking away if this may be triggering for you.
For 2 weeks at the beginning of September I lived with an undiagnosed fractured jaw. Not just a little chip, my mandible is completely broken, all the way through! I went to hospital but they were certain it wasn’t broken (that’s a story for another blog). During the 2 weeks before diagnosis I was trying to manage a soft tissue injury which involves gentle exercises and trying to chew despite the terrible agony! I was even playing my saxophone!
Anyway, long story short, fracture diagnosed, surgery untaken, restricted diet underway and I’m losing weight like it’s going out of fashion!
I’m trying really hard to be honest with people about how things are going. Things haven’t been straight forward with the recovery, I’ve needed extra appointments and additional management.
This is a mental health blog where I talk honestly about mental illness and recovery. Being on the right side of recovery it’s (relatively) easy to talk about the bad stuff because I can see that things turn out alright in the end. But at the moment, while things are physically really hard, my mental health is under strain.
I always think twice about writing a blog like this because I don’t want anyone to worry about me (as there genuinely is no need).
My mood has taken a hit, for a number of reason: missed diagnosis, pain, fatigue, not being able to do the things I usually do. I think all these things would take its toll on anyone’s mood.
I also have a history of anorexia and despite full recovery, something I struggle to talk about is my residual poor body image. I was told, as I was supported to weight restore, that my mind would catch up with my body; they tell you, you must weight restore first, then you will gradually start to feel ok about a “normal/average” body size. But I never have, I’ve never felt ok in a “health” body. It’s always felt too big, too fat, like I’m taking up too much space. So as my weight has dropped on a liquid diet, I’m feeling a bit better about my body – I know this can be a slippery slope but it’s a familiar space and when you’re feeling low, you grasp for anything comforting. Old thought habits fall into place easily.
I’ve had people say “you’re looking good”; this really doesn’t help. Those of us who’ve been down the ED black hole know these comments fuel the fire.
The most scary thoughts/feelings are when I’m walking around a supermarket or in a cafe and I see lots of foods I want but can’t have. People often think anorexia is about hating food, forgetting about it and not being bothered by it – far from this, anorexia is an obsession with food, thinking about it all the time, the body wants it but the mind has to find ways to avoid due to shear fear and anxiety. When I had anorexia whenever I walked around a supermarket I would see lots of foods I wanted but I couldn’t have – right now this is all too familiar.
Ways I’m looking after myself:
Learning to rest and enjoy it – a familiar pattern would be to exercise away my limited calorie intake but I know this would be unhelpful. My body needs to heal, I need to help it as much as possible. It’s easy to feel guilty about resting but why should I feel guilty about looking after myself?
Getting fresh air everyday – it’s easy when feeling down to shut yourself away, especially with so little energy but fresh air is good for the soul!
Continuing with routine – although I can’t do a lot of things I usually do I’m still going to work and church. If I’m looking for familiarity, I can’t go wrong with being around familiar people.
Keeping meal times – not being able to eat (only drink) it would be easy to fall out of meal time routine but I’ve remained with the pattern of breakfast, lunch and dinner, trying to vary the drinks I have!
Being honest with people – how easy is it to say “alright” or “fine” when someone asks how you are?! I cut down what I say depending on how much time someone has but right now things aren’t ok so I say it how it is. I never want people to lie to me when I ask them how they are, so I treat people how I want to be treated.
Being conscious of calories and nutrients – Feeling low and lacking appetite, it would be easy not to bother with food but I know it’s important. It’s hard work getting in enough calories when they’ve got to be accompanied by so much water but there’s good information online for post surgery dietary intake. Plus I have a good dietitian friend who’s helped me out!
I wanted to write this blog, partly to raise awareness about the chronic nature of mental illness. Even when recovered, it can lurk in the background, we remain susceptible to relapse. I also wanted to let anyone who’s struggling with relapse know they’re not alone, it doesn’t have to be an inevitable black hole. Right now, I’m working hard to stay well, by looking after myself I know things can get better.
The Locum psychiatrist looked enraged when I pointed to the BNF and said with a heavy heart “I’ve tried everything in there.”
(The BNF is the British National Formulary for medicines used in the UK by all doctors, pharmacists etc as the medicines bible. It has all tried and tested drugs listed with their uses, dosages and side effects.)
I was experiencing another dip in my depression, my current anti-depressant was not working and I’d checked my copy of the BNF, there wasn’t really much else to try unless I was prepared for almost certain weight gain (which I most definitely was not – I was on a waiting list for treatment at an Eating Disorders Unit for my anorexia – I did not have any support at the time!)
The psychiatrist didn’t like a) that I knew what I was talking about (they like to hold the power and control and sadly some feel threatened by my medical degree) and b) I was presenting with “treatment resistant” depression. This phrase is used when it is felt that various treatment avenues have been exhausted and the depression remains. Looking back at this particular appointment, a short admission would have been useful but it seems this psychiatrist decided that would be too much hassle. Despite me having spent the entire appointment in floods of tears, I was sent home with no change in drug regime, no additional support and no further plan. The negligence of this psychiatrist aside, treatment resistance is an incredibly difficult phenomenon to tackle and the spiral of hopelessness can be disastrous!
There is, however, research currently being undertaking into the genetics of mental illnesses. For example, the Genetic Links to Anxiety and Depression* (GLAD) study is based at King’s College London. Therapygenetics is using genetics to predict treatment response in mental health conditions. While I’d heard of research into the trying to find genes “responsible” for various mental illnesses (a hunt that’s proving to be futile), this shift to looking at what our genetics can tell us about what treatment options are more likely to work is relatively new.
Recent research* showed 80% GPs admitted they treat mental health problems as a progress of trial and error. They try one approach after the other, based on what is available in their area and their own experience. This is not just frustrating but could be fatal for some who’re suffering with suicidal thoughts, they might not have time to try one drug after another until they find the right one. New research could enable doctors to finesse their prescribing so the patient can get the most effective treatment, for them, as soon as they are diagnosed.
My story did not end with being let down by a Locum psychiatrist – fortunately, on this occasions I had a good friend scrape me off the floor and supported me over the next couple of days until I could see my GP, and I eventually got to see the eating disorders team, then the psychotherapist who changed my life, and the rest, as they say, is history. To date, I’ve been on, maybe 10 anti-depressants, a few anti-psychotics and a couple of mood stabilizers; I’ve also worked with about 15-20 psychologists and therapists who all believed their approach was right for me. Fortunately, my current anti-depressant has been working for about 8 years (I did come off it, but went back on it!) and I continue to use skills gained from various therapies but it was individual systemic therapy from someone with specialist knowledge and experience in eating disorders that was right for me.
Just imagine if I’d been able to give a sample of saliva 20 years ago and from that, I’d been able to access the right drug and therapy treatment immediately!
Some research is finding genes that implicate how we respond to both negative and positive environments. It is noted that people with a particular gene variant are found to be highly sensitive to adversity, they also respond particularly well to social support and positive life events. This research, with children, looked at different outcomes of individual CBT, group CBT and parent-led CBT. Being highly sensitive to environmental influence led to a good response to individual therapy, whereas those who were less sensitive had similar outcomes to each course of therapy. This is just one example of where a generic variant could possibly predict outcomes to different therapies.
But let’s hold fire a minute. We’ve always known all mental illnesses have a bio-psycho-social cause; that is, there are elements of nature and nurture, our genetics and our environment that can lead to development of a mental illness, so doesn’t it follow that we need to take all of this into account when treating an individual? If we run off into the genetics trap, thinking we can pinpoint the ideal treatment with a mental illness, we’ll forget that they will bring with them a whole host of environmental and psychological factors that will influence their ability to engage and benefit from any given treatment.
Camilla Kong*, a Senior Researcher specialising in psychiatric genomics at the University of Oxford has a background in moral and political philosophy and an interest in the ethical issues raised by genetic research in mental health. She has concerns about us focusing entering on a genetic level, she says “It is quite a reductive explanation…that diverts our attention from the person as a holistic being who is impacted by relationships, life history, structural inequalities and environment and social issues.” She is also concerned with stigma and the assumption that diagnoses are life long and incurable. The biogenetic explanation lends itself to fatalism and works against the therapeutic alliance and hope. Of genetic research she says “I think researchers over-promise – they have to, to attract funding – but even if academic institutions pay for the research, and the results are more measured, public expectations are still very high and the more nuanced findings are ignored.”
Whenever we talk about genetic research, there’s the shadow of eugenics. Kong wisely warns us, as we learn more about genetics, “It’s not that we shouldn’t do it, but we need to be very critically aware of the reasons why we are doing it.”
Perhaps what we can learn from my story is that sometimes finding the right medication and therapy takes time and this time is valuable, I learnt a lot as I went along, some things can’t be rushed! It saddens me that (in the UK) there’s a such a push for everyone to travel on the conveyor belt that is IAPT (Improving Access to Psychological Therapies) – now there’s a service that only partially living up to its name. Access has been improved, no matter what your symptoms or history, if you present with mental health problems, you qualify for 6 sessions of CBT in IAPT, this will be the answer for some but there’s no room for flexibility or individualisation. I was involved in some work to train therapists to recognise when the basic IAPT programme wasn’t going to be enough and how/what treatment to refer patients onto but NHS funding for tertiary mental health services is still floundering; scarce resources mean long waiting lists, leading to people with moderate mental illness becoming people in mental health crisis.
For every cancer patient, £225 is spent on research. For every mental health patient, the equivalent figure is £9**. It’s great that some money is being spent on research but so much more is needed. It concerns me that to attract funding outcomes are being over promised and we all know that the media always sensationalise research results. What we really need is some down to earth longitudinal studies that will back-up the need for particular groups of patients to have long term therapy while others may benefit from shorter, specialised therapies. We then need the funding to train GPs and enough tertiary services to provide appropriate support.
*Information and quotes from Therapy Today Volume 29, Issue 10 – Nature and Nurture, Catherine Jenkins.