Physical disease is so much easier to understand than any kind of pain or discomfort that has to do with emotions. Relatives and friends of patients saddled with a psychiatric diagnosis often become secondary victims themselves, as they struggle to understand what is happening to their loved one. All too often they feel sidelined, frustrated and undervalued. But there are some things which they can do to help their loved-one’s recovery, and other things which, however well intended may have less than beneficial effects.
When working in ED, I came across parents of children and adolescents who were desperate, convinced that their child would get the help they needed through mental health services. They believed that the long-awaited referral to CAMHS would at last sort out the problems. But the truth is, that it is rarely so easy in any age group, and often the first appointment with mental health services also marks the first step on a treacherous journey marked by repeated crises.
It’s ghastly to see any of these families in pain, as they wonder how they’re going to survive it all. Then when the labels given through psychiatric diagnosis do not provide the expected relief and the prescriptions for psychiatric drugs that follow, are simply not ‘working’, the situation becomes a whole lot worse. When the patient returns to the doctor, the usual first response is to increase the dose, and when this proves ineffective there will be further changes in the medication regime – a substitution of a new drug, or perhaps an additional prescription. Far too often, any prior expectations of cure vanish, and what’s left is a patient saddled with long-term prescriptions for psychiatric drugs plus all their attendant adverse effects, which just compounds an already dire situation.
More often than not, looking back, the ‘signs’ of struggle were apparent, even if not fully appreciated, for weeks or months before the sentinel event or crisis that created the desire to seek help from healthcare. Yet, whatever it was that led up to the initial problems becomes buried under the complexities of life as a psychiatric patient.
Frequently, I read emails or hear reports from desperate friends or relatives, describing the difficulties faced by a loved one who has been a patient within mental health services for months if not years. For many, it’s like the wool has fallen from their eyes, as they realise how their loved one is now a mere shadow of their former selves, and they see no hope of change. The promise that a hospital admission might ‘help’ has failed to resolve the root causes of the problems, and even when their loved one, at the centre of their concern is ‘more manageable’ as a result of the drugs, they are still not better. Often friends and relatives want answers, but more commonly they want to be able to DO something. They find it unbelievably difficult to just accept the situation and wait patiently. And why should they?
The trouble is that such impatience can easily be misinterpreted, both by their loved one and by the professionals involved in their loved one’s care. Relatives’ concerns are only valid when they are in line with the thinking of the psychiatric team – for instance, if they worry that their loved one is not taking their medication, then of course the psychiatric team will be onto it, but should they express reservations about the treatment their loved one is receiving, then they will be classed as interfering.
The relative may have been the one to ‘get help’ for their loved one in the first place. They may have valuable information, having witnessed their deterioration and seen the futility with which their loved one strived trying to get the help they needed. The relatives may even credit themselves – indeed more than once I’ve heard it said, “it was me who got them sectioned.” But having handed their loved one over to the ‘safety’ of psychiatric services, the expected return to ‘normality’ has not been realised.
Some relatives give in; they accept the traditional psychiatric mantra which deems that their loved one will be ‘mentally ill’ forever, always needing the drugs, believing that without them, their loved one will inevitably deteriorate. Of course, this is the line sold to many patients too, and it is easy to believe as evidenced when relatives witness for themselves what happens when their loved one rebels and stops taking their prescribed drugs. But how are friends and relatives to know or understand that what they are seeing may be the effects of sudden withdrawal, when GPs don’t know, patients don’t know and information about withdrawal syndromes are not passed on when their loved one first starts taking psychiatric drugs. Few people know that in the days before modern psychiatry, with support, the vast majority of patients recovered spontaneously without any drugs and without recurrence of their previous problems.
But some of the worst descriptions I hear are how powerless relatives feel. Many feel the need to write to the psychiatric team – and are frustrated when they receive no reply. Their loved one’s treatment is shrouded in secrecy, wrapped tight by the powers of confidentiality and nobody from the psychiatric team will say a word without the loved one’s permission. And let’s face it, nobody knows what goes on, what is said, what meetings take place, what is decided, not even the patient, because all of it happens behind closed doors.
Once the relative has earned the reputation of ‘interfering’, there is no going back. Even if the loved one decides for themselves that they want their treatment to change, or their drug doses to be lowered, or to stop them altogether, they will forever be suspected of having been influenced by their ‘ignorant’ relatives.
The relative is absolutely powerless against a mighty psychiatric machine that wields its mechanistic determination to go it alone and considers it to be the ‘right’ thing to do. Psychiatrists can detain, lock up and forcibly medicate their loved one ‘in their best interests’ and for sure, a psychiatrist’s opinion of a dissident relative is that they do not know what is best for their loved one – despite the fact that said relative is far more acquainted with the personality and the life of the patient they’ve loved and lived with for years on end.
Unfortunately, it remains commonplace for psychiatrists to ‘forget about’ their patient’s life before diagnosis – yet there is always a story behind the breakdown. However, in the present era, psychiatry no longer concerns itself with such detail. Even when their patient has had significant trauma earlier in their lives, it will not be seen as a root cause but rather reframed as leaving the patient with ‘vulnerability factors’. This is justified by the continued belief that there is some kind of, as yet undefined, physical reason which makes the person ‘mentally ill’, despite the fact that extensive research has not provided any reliable, reproducible evidence for this. The process which psychiatrists use to diagnose mental illness is a subjective assessment of their patients’ reported, subjective symptoms. But friends or relatives who dare to challenge such expertise will invariably be answered with a response stating that the patient is mentally ill, the psychiatrists need to do their jobs, and invariably the patient needs to be treated with various psychiatric drugs (and possibly electroconvulsive therapy -ECT).
Relatives may succumb to their own despair when they see what happens as their loved one loses their independence and adopts a life defined by vulnerability, strongly allied to mental health services. But all too often, as time passes, the overworked psychiatric service loses interest, drops the patient, leaving them with their lives ruined. By now their loved one will be dependent on the benefits system – too late for careers, too late for marriage and family, and more than likely plagued with physical health problems caused by the adverse effects of years on psychiatric drugs. That is, if they survive.
Too many lives are lost before their time, and the relatives will never have the opportunity for open-minded exploration of what really happened, let alone restitution.
Bleak though this outlook is, it is still vital that friends and relatives do not lose hope. It is necessary to be realistic, but also to understand that there are alternative ways to help, even if it is not through the most obvious ‘healthcare related’ routes. It’s very tempting for friends and relatives to tell their loved one ‘what they need to do’ but unlikely to be successful. I would encourage them not to take offence but instead, remember that most patients who are receiving psychiatric treatment will find it easier to take advice from ‘the experts’ in their psychiatric team – and it’s very difficult to argue with that.
So, what if anything, can friends and relatives do?
Former psychiatric patients who get through their experiences and go on to live fulfilling lives tend to say similar things – it was when they took back control of their lives and circumstances that they also discovered that they had it in themselves to recover. I think this is true for any of us – belief in ourselves works wonders. But fostering a loved one’s independence can really take some self-discipline and it may be necessary to do the exact opposite of what is not working at the moment. It may sound cruel when a loved one has seemingly reached rock bottom and indeed has been dwelling there for a considerable length of time, but we have to curtail ourselves; we must understand that ‘rescue’ is not the answer.
Patients who have been relying on others, particularly psychiatric services, often for years at a time, live in hope that someone else or something else will provide the key to get them out of their difficulties. When this has failed, believe in them. Believe that they have the capability to make their own choices, their own decisions, because they are the ones who have to live with the consequences, and they are the people who hold their own keys to lasting recovery. Even when mistakes are made, it is this self-reliance which is necessary to rebuild the resilience that will carry them through the inevitable ups and downs of life that follows.
Of course, I am not suggesting that friends and relatives abandon their loved one, but it’s important to see that a beleaguered social system often relies heavily on them to plug the gaps in care. Yet when those relatives are powerless to bring about the change they want to see, they run considerable danger that they will end up feeling used, and in the long term, it will just lead to resentment. It’s worth considering whether stepping away with love might create space for their loved one to find opportunities to help themselves. If it does means restricting previous physical or financial support, then it’s vital to make sure that the person at the centre of concern, knows that they will always be loved.
In addition, I believe that friends and relatives must learn new ways to look after themselves. They need to model self-care – find new ways to exercise, new hobbies or interests, eat a good diet, join social groups or explore spirituality. If they are using their own ‘props’ – drinking too much, excessive eating, shopping, gambling – then it is important to demonstrate that they too can get the help they need to live in a healthier way. (Although I would advise against medicalising such issues.) Friends and relatives would do well to learn about emotions, understand how normal it is for them to fluctuate, understand how they are the body’s signal to tell us what is going okay and what needs to change. None of this needs to be expensive – there are online communities such as ‘Drop the Disorder’, websites such as ‘Mad in the UK’, and these point to many alternative resources as well as providing inspiring examples of lives changed, from those who have successfully recovered.
I suggest that relatives need to be proactive themselves when searching for friends and allies with whom they can share their pain – to be able to be real, curse and swear with frustration if necessary, but remain out of sight and away from the ears of all who might misinterpret such distress or use it against them. When friends and relatives find their own versions of contentment and peace, it will make much more sense to their loved one, rather than just talking about how to live well in difficult circumstances.
Undoubtedly it is hard, and while such struggles continue, above all else my advice is to cling to hope day and night. Model endurance and persistence in the way you hope, and perhaps in time your loved one might find their own path through to the light at the end of the tunnel. It is only when these incredibly challenging times are over, that friends and relatives may find the opportunity to share their own struggles and the truth of what happened, should they still wish to do so.



