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Treating mental illness is trial and error

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.

Biological, social and psychological Venn diagram with mental health a the the centre.

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.

** MQ Mental Health

How do you marry someone with a mental health diagnosis?

meant to meet
Dating is tricky, but add the complication of mental illness and it’s even harder! On the road to recovery, while considering dating etc I’d decided I did not want my illness to be part of my future relationships but I also thought that dating and entering into a relationship couldn’t necessarily wait until I was fully recovered. During my recovery I dabbled in on-line dating, it was fun but nothing much to report until I met Steve.
On our first date, an informal drink at a pub, Steve and I agreed to go on a second date, out for a meal. I was desperate to look normal. One big problem – I’d not been out or eaten with anyone but my family for years. I fought with myself because I wanted to challenge myself so, in trepidation (I really liked this guy) I wrote a carefully worded email entitled “In hope I won’t put you off” and explained I’d struggled with anorexia, although most of it was behind me, I have a few hurdles to overcome. I wanted to “be normal” but asked if we could dial it down and if he could pick a restaurant where I could have a salad. That way the actually eating wouldn’t be as tough and I’d just have to tackle the eating out with a relative stranger aspect!
How Steve reacted to this email and therefore our future was in his hands:
How did you feel when you received the email? “It was a mixture of feelings. On one hand, there was the “poor girl, she’s been through so much” reaction. There was the feeling of shock, “could I handle this? How ill is she now? How to I treat/behave around someone with these conditions that I know NOTHING about (especially the anorexia)?”. Then there was the, “stuff it, I can’t be arsed” thoughts (these lasted about 2 seconds). Then, there is the fact that all relationships, especially romantic ones need a lot of hard work and graft (of which I was no stranger to, considering a previous relationship I had been in) and I was prepared to do it, because we had a right giggle on our first date (my fault!)”
“So going forward, I thought I would try and support her, by helping her take baby steps in facing challenges. I think I compared it to a marathon runner, they don’t start by running a marathon, they’d just fail, they start by running around the block. So we changed the plan. I said I’d cook some nibbles at my house and we could watch a film (hoping to take the pressure off the eating side of things). (I cremated the bruschetta, though I still think it was her fault….she kissed me whilst they were cooking!)”
I was used to taking baby steps, hence why I’d suggested a low key restaurant but Steve seemed to instinctively know that even smaller baby steps would help! I’m glad he still agreed we could eat since I didn’t want my old behaviours (of avoiding eating with people) to impact a new relationship.
What resources did you use to react to the email? “Firstly, the reason (in my mind) we didn’t have food at the first date, and only a couple of drinks, was because I was en route to visit my best friend, Tom and his family. I had no idea, she hadn’t suggested food for her own reasons. How stupid did I feel now?!”
“I was with Tom when I received the email and mentioned it to him and his wife. They didn’t really know anything about either depression or anorexia but we bounced a few ideas over together. Other than that, maybe due to the taboo of mental health, I Googled it and came up quite frankly, blank. There was a forum, where I registered and asked the question “how does one cope in this situation?”. They were as good as they could be, ramming home the idea that each situation/diagnosis was as unique as the person who has it. Totally! They also said how good it was I wanted to be with, and help this girl, I’d just met, and not in a patronising way. (The way I saw it, wouldn’t all people do this? It’s just human to want to help the person you like/frankly, want to impress)”
Not everyone is like this – many people would be put off by something they don’t understand. Steve genuinely has no idea how amazing he’s been at helping me (a relative stranger as I was then) through so much.
Why did you not run a mile? “On our first date we had a giggle together. She was (is!) also cute, and seemed keen to go one a second date with li’l ol’ ugly me. I’m not afraid of hard work, and in hind sight those first few months (arguably are the hardest of any relationship) I had lots of emotions ranging the full spectrum, but we grew through it, and learned to communicate early on. Pen and paper worked best for us, I think it started with a letter posted under the toilet door. This set, in my mind, a brilliant foundation for our relationship (if you want to know more, comment below and I’ll elaborate – it’s not anything dodgy!)”
When most distressed I’ve always struggled to talk, I don’t know why, there’s some sort of block. Steve and I realised we could write to each other – might sound odd but it worked 🙂
So, moving on, Steve and I decided we’d give a relationship a bash, this turned into marriage. We’ve dealt with a few issues relating to my health:
What’s been the hardest thing about being in  relationship with someone with a history of depression and anorexia? “Other than eating 2 entire pizzas in Italy in one sitting because she got stressed out in a restaurant?! It’s the helplessness I feel when she’s upset. We started very early on going to her therapist together, something she was keen for me to do. This obviously involved a lot of emotions, and I will never forget one of the very first ones where afterwards we sat in the corridor, her crying inconsolably in my arms for over an hour. I am a man, we are famed for wanting to fix everything, and although I’ve learnt I can’t fix everything I still want to. I’m working on it, but when I can’t do it, I feel helpless, useless, a failure. That’s the hardest thing.”
I hate that my issues impact Steve, I’d rather manage my stuff on my own and prevent it affecting other people but that’s just not feasible! Letting Steve in (to my head) has been so important to our relationship.
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What’s your worst fear and how do you manage it? “The unknown. Frances has had multiple hospital admissions, and some very intense treatment in the past for her illness(es). I’ve not seen her at her worst in this aspect. I’ve seen little dips here and there, but never hospitalisation. I treat every new expression of emotion with suspicion, is she getting ill again? If she is, how will I manage it, what if we have a child (the grand plan) and she gets ill and goes into hospital. How will I cope with that? As Frances will tell you, I am GREAT, the world’s best, at worrying. I worry about everything. To deal with this, I have to simply ignore it. There are no answers. She may not ever get ill again (woohoo!) but she may. I can’t fix it, so I beat it down and ignore that fear, and will have to cross that bridge when we, IF, we get there.”
If Steve’s concerned, he tells me. I’m honest and mostly try to reassure him. For me, I know how hideous being ill is so I’m not afraid of the unknown, I’m afraid of the known! We are doing everything we can to avoid me getting ill again, we talk about everything. If it does happen, I know we will tackle it together.
When considering to marry Frances, did you consider her mental illness? “Yes, when I started thinking about marriage I thought about Frances being ill, being vegetarian and the fact she’d have to put up with my farting in the middle of the night (seriously, I feel sorry for the girl on this one!). I just saw her illness as another thing that needs to be thought about.”
Have you had doubts about marrying Frances? “If I hadn’t, I’d argue I wasn’t human, or honest with myself. The first few months after marriage I felt trapped. Why? Who knows. Truth be told, having lived together for a year before hand, the only thing that had changed was having a piece of paper saying we were married. That was it. So I knew it was just me being irrational. I did some research as to why I’d be feeling like this and apparently it’s very common. So I thought I’d just move on.”
“If you asked me if I’d had doubts due to Frances’ mental health? Not once. It can be a challenge at times, it can be a fear, it can be a pain in the backside. But not a doubt. It has shaped Frances into the woman she is and the woman I love.”
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How will you cope if Frances relapses? “As I’ve said before. I’ve no idea. I have our friends, my family, Frances’ family (who’ve been there before) that I can glean comfort, wisdom and strength from. I have my motorbike that always helps clear my head when I need it to. We have 2 cats who never fail to make us laugh. I know Frances has been to hospital before and has always been discharged so there’s always a light. She is a survivor, not a statistic. She doesn’t want to be ill. All of these things I can hang on to.”
“My biggest fear is about how Frances will feel about me. I will do the only thing I know how to. Be myself. But if she’s that unwell, will she still be able to look me in the face and say “I love you”? If ever she can’t say that due to the numbness of depression, then I will struggle. But I have made sacred promises to Frances, and I am a stubborn ass, and she will break her promises to me before I do (but I know she won’t, because she’s even more stubborn  than I!!)”
I know I will always love Steve but he’s right – mental illness messes with your emotions so there’s no way of knowing (if I get ill) how I will feel or what I will think. If the illness takes over, I hope he can remember that it’s not me. He has my promise that I will fight to recover and I will never break the vows I made before God.
depression nest
What advice would you give anyone in a relationship with someone with a mental illness? “Have ‘you’ time often. I go down the pub most Fridays with my friend Phil, or play xBox with/without my friend. I talk to them about things I’ve found hard. Whether it’s been that Frances hasn’t eaten because she’s feeling fat or she’s come home from work in tears every night (thankfully a new job solved this!). I’ve spoken about it all. I’ve expressed my fears, I’ve not bottled it up.”
“THE bit of advice. The bit that works for mental health, physiological health, relationships, even cooking. Communication! Talk to each other. The “you” time lets you unwind from the stress of things. But doesn’t sort it. Why do you think you are fat even though you fit into clothes I thought small enough to give to a child? Communication isn’t just about the listening, its about the talking too, and about the working through things together. As a junior software engineer, I had the phrase “root cause” rammed into my head, over and over again when bug fixing. Something is wrong, don’t worry about what is broken, worry about what has broken it. (E.g. Bike engine not getting any petrol, you don’t put petrol in the engine, you trace the fuel lines all the way back to the empty fuel tank). Maybe, just maybe, it doesn’t need fixing and just needs to be expressed and WE have to learn how we can enable that expression in an appropriate way. If it can be fixed, often, the only way to figure out how to fix something, is to approach it from a different point of view.  How do you find those points of view? Explore it, with each other, with friends, with professionals, with family, and see what you come up with.”
Final word? “If, like me 3 years ago, you have come across this blog/interview looking of help and advice and/or answers to a new relationship with someone who’s just dropped this bombshell on you (and yes, it is  bombshell the first time of the 20 or 30 times you’ll read that email) ask yourself this. Why are you entering this relationship? It’s hard work. Take the usual hard work of a relationship, and add more into it. I count myself lucky, I entered into the relationship knowing about these illnesses. I’ve had friends who have had these illnesses thrust upon them after marriage. Some are still going strong, some have ended the relationship. It effects everything. Whether it be the knowing what to do about taking meds abroad, or the phone numbers of the CMHT in your phone. To knowing how to comfort this person when they are in tears for seemingly no reason. Everything will change, and your way of thinking will change too, be prepare to get offended by Halloween costume names that normally you wouldn’t think twice about! BUT, and its a huge but, if you stick at it, learn to identify the help your significant other needs, the help you need from both them and the people around you. You build the strongest foundations for the relationship. I love Frances, through and through, and whilst I have had nightmares about what might happen in the future, I wouldn’t change a thing about her. Except maybe persuade her to eat meat, oh and let me have a dog :P”

When my mind broke my body

survived
TW (some may be adversely affected by the contents of this blog)
10 years ago an illness took me to the darkest place on earth
10 years ago I believed I would be better off dead and suicide was the only option
10 years ago my Dad answered his phone “hello sweet-heart” but a policeman had used my phone to call him, he was told his daughter had jumped off a bridge in an attempt to end her life and was lying broken on the ground
10 years ago my parents drove 30 miles, feeling numb with no idea what they were going to find at the end
10 years ago the surgeons said I should have died
10 years ago I lay broken in a hospital bed, I needed a bone graft to repair my sight, a metal fixation to prevent permanent paralysis and months of bed rest to allow my fractured legs to heal
10 years ago the psychiatrists wanted me to go straight back to the psychiatric unit
But something inside me had changed…my mind was broken, my body was broken but I realised the spirit inside me was still alive…
I had survived when I should have died, I’d been given a second chance, my story wasn’t over…
semi colon image
In the last 10 years my relationship with God has deepened
In the last 10 years I’ve learnt to live with the consequences of my actions and I manage the chronic pain
In the last 10 years my family have gone above and beyond in the support they’ve given me and some amazing friends have stood by me
In the last 10 years I’ve been through more emotional pain but I’ve learnt how to cope with it, I’ve learnt that crying and being angry are important parts of life
In the last 10 years I’ve been to a therapeutic community, day care, had more hospital admissions and over 100 individual therapy sessions
In the last 10 years I’ve discovered who I am and developed a sense of identity
In the last 10 years I’ve been out of work, in voluntary work and in paid work
In the last 10 years I’ve found my soul-mate and married him
I have no idea what the next 10 years has in store, we may start to build a family in our own home, or these things may not be possible but whatever happens I know the person I am now is equipped to deal with life’s challenges head on!
life
For more information or if you need to talk to someone, please contact:

Or contact your GP and support team. Please do not suffer in silence.