The silent stigma | Daniela Calleja and Stephania Dimech Sant

Mental health has been in the news a lot recently. Government has just announced a major revamp of Mount Carmel Hospital; controversy erupted over a Carnival joke at the expense of the mentally impaired; and just this week, it was revealed that a man lost his job after going public about a specific condition (bipolar disorder, in that case). At the same time, there are statistics indicating that the proportion of people who suffer from such issues may be much higher than we think. How do you account for this apparent spike in concern? Are we discovering a reality that always existed? Or is it a case that – with today’s stressful pace of life – more people are actually suffering from mental issues than before?

DANIELA CALLEJA: It is a bit of both, really. There is more awareness today, so people tend to recognise symptoms more. They also seek help more than they used to. Whereas before, it was something people used to hide... today, people are hiding it less. There is also the factor of stressful lifestyles: there are statistics showing that one in four persons suffer from depression, for instance. Depression is expected to be the highest disease of burden, globally, in a few years’ time. So it is a bit of both. But we’re seeing it more now, also because... this is a strong feeling I have: Malta is ready, but now Malta needs to learn...

Ready for what, specifically?

[DC] Ready to reduce the stigma, ready to understand... ready to see that you can seek help, and that you can lead a good quality life, at the end of the day. Because there are people who suffer in silence. If it’s one in four of us, there must be many people suffering in silence out there. With the calls we’re getting now, we can feel the pain of these people...

The fact that you’re getting those calls means that people are now willing to seek help for such problems. It wasn’t the case in the past. Do people still consider ‘mental health’ issues as being somehow ‘different’ from other medical conditions?

[DC] When we teach mental health first aid, we use this analogy: if you start getting symptoms of diabetes, for example...how long would it take you to go to a GP? In most cases, the answer would be ‘within a week’, at most. If you start getting symptoms of depression or anxiety, however, and you don’t recognise them... it might take much longer. Some people might take even up to 10 years to seek help for these conditions...

That reminds me of a famous quote, to the effect that: ‘if you’re in the lowest part of a valley, you can’t see what’s beyond the hills’. Isn’t it also a case that people suffering from a condition like depression are not in a position to realise they have a problem, because the problem itself distorts their perspective?

[DC] I’d say it’s more a case that... let me give a simpler example. If I wake up in the morning, and I’m coughing and sneezing... I have a touch of fever, feeling nauseous, etc... I would have already diagnosed myself with the flu. Right? Because they’re common symptoms that people know about. If I wake up in the morning, and feel sad for no particular reason... my heart is racing all the time... I don’t feel like eating, I can’t sleep... and it’s been happening, day in day out, for two weeks...  If I don’t know that those are symptoms of depression, I’m going to think a million and one other things. So, to go back to you quote: sometimes, you won’t even know you’re in the valley. You’re blindfolded...

But under those circumstances, nobody can be expected to seek help. If someone doesn’t know he has a condition, because the condition itself impairs the ability to realise you have a problem...

[DC] But it’s not the condition that does that. It’s society. It’s not the condition that stops you from seeing, that gives you a lack of insight; it’s the fact that we are not educated enough to recognise it. My son, who is 10 years old, knows enough to recognise symptoms of the flu. He knows what the flu is. If, in future, he gets thoughts of suicide... I want him to know what that is, too. I want him to recognise that it is a condition he can do something about. That he can go to a doctor for it. That is where we are at right now: we need to learn how to recognise the symptoms... to say, ‘it could be this’, and to seek help.

Coming back to the stigma: in years gone by, there may have been a perception – not entirely unjustified, given that psychiatry is a relatively young science – that... if something goes wrong with your body, maybe the doctor can fix it. But if something goes wrong with your head... that’s it. There is nothing that medical science can really do. Does that perception still exist?

I always find this very paradoxical, because I always say that your head is still part of your body. It’s part of the physical ‘you’. If your kidney can get sick, your brain can get sick. And in both cases, there are conditions that can be cured, others that may be chronic... but you can still live with them...

True, but the stigma still exists. There have been cases (one this week) where people reportedly lost their job – and probably many more where people would not have been employed at all – on the basis of real or perceived mental conditions. This raises the question of how symptoms of mental illness are viewed by others: employers, for instance...

[DC] When people think of mental illness, the first thing they go to is... aggression. OK, so someone has a mental health issue... therefore, that person is aggressive. It was a question we were asked about the case you mentioned earlier: we were approached by people who said they might be interested in offering that person a job: but... ‘would he be violent?’ Because in the past – and up to a point, also today – the media tended to portray people with mental health problems as aggressive. The reality, however, is that people with mental health problems are most often the victims of violence. There are ample statistics to confirm this. They are the vulnerable ones...

[STEPHANIA DIMECH SANT]: And the law-courts don’t help very much, either. Very often you hear about cases involving violence, where the alleged perpetrator would be sent to Mt Carmel Hospital. And that is what the media pick up: so the courts and the media sustain this perception that people with mental health problems are violent... or that people who commit violent acts might have a mental health problem...

Another message sent out by that sort of verdict is that the only ‘solution’ in such cases is to simply lock up people with mental health problems...

[SDS] It was the same with disability until not too long ago. With disability, we have moved forward in leaps and bounds, thanks to the efforts of Agenzija Appogg, for example, and government, and KPMD. They worked very hard, and got us to the place where we are today. With mental illness, however, we’re still a little behind...

With the disability stigma, there was also the archaic view of a ‘physical impairment’ as some kind of ‘punishment’ for the sins of the past. With mental health, there is the added perception of a condition that might ‘run in the family’. People may be afraid to seek help, also because the stigma may also affect the people around them. Do you encounter these kind of concerns?

[DC] Yes. I’ve known cases where families were worried that, if their loved one speaks out, the entire family would be stigmatised. Sometimes we get people who call us, telling us that family member has this or that problem... ‘but don’t tell him we called. I don’t want him to notice that I’m noticing.’   So even between family members, there is a barrier. One of the issues we encounter is precisely this: people might call us seeking help for a family member, but unless the person concerned accepts to be helped, we cannot do anything. Unless we’re at the stage where they’re a danger to themselves or others, and then you have to involuntarily give help. Which is the very last thing we, or anyone who works in mental health services, would want to do. There are cases where it has to be done, obviously. But it’s still imposing treatment on someone who doesn’t want it. And we don’t have to reach that stage. If people didn’t have to fight against social stigma to get help, they wouldn’t reach a stage where they’re so unwell they have to be treated involuntarily. People would consent much earlier. Without the social stigma, there wouldn’t be such a price to pay...

Earlier we alluded to the case of a man who was fired because he publicly revealed that he suffered from bipolar disorder. That is another ‘price to be paid’. Is it something that happens a lot, and in what way does the Richmond Foundation assist in such cases?

[DC] It happens. I can’t say that it doesn’t happen. It does happen, and we have a service to help people to find and retain employment. Helping people with mental health problems to find a job isn’t easy. But it’s much better than it used to be. There are so many good organisations which take care of their employees... it is definitely on the rise. Until a couple of years ago, however, it was a lot harder.

How does the law stand on cases like that? You can’t legally fire an employee because of a physical disability, for instance... or because of skin-colour, or gender, etc. Surely it’s the same with mental health?

[Both together] Any form of discrimination is illegal...

Perhaps, but to refer back to the case we mentioned: nothing seems to have happened...

SDS: First of all, a lot of depends on what action the victim chooses to take. If they don’t choose to take it forward in a legal format... nothing’s going to happen. It’s not a crime the police would act upon independently. I am sure that there are many cases of discrimination that never came to light, because the victim prefers otherwise...

Does the Richmond Foundation offer that kind of service, too? To take such cases forward?

SDS: We try to help, yes. It is not within our remit to take any direct action in such cases; but we would help by trying to empower the victim. We would liaise with the Mental Health Commission, offer guidance, and so on.

Meanwhile, to return to an earlier point: government has announced a reform of the mental health services, focusing on Mt Carmel Hospital. This might be an unfair thing to say: but Mt Carmel has almost come to be a metaphor for the stigma itself. The conditions are understood to be (or to have been) woefully substandard; and even the name – ‘Frankuni’ – sounds like something you’d say to frighten a little child. What is being done to rehabilitate the image of that hospital?

SDS: The irony of the name is that it comes from ‘Franconia’, the name of the villa. And it’s a beautiful name. Like so many other terms, we have somehow managed to corrupt that beautiful word and turn it into something frightening. Unfortunately, that perception still exists in many people’s minds. Especially, I would say, the older generation. What’s being done? Over the years, not nearly enough has ever been done at that hospital. This, too, also reflects how we, as a society, look at that particular sector of our health services. As for the de-stigmatisation process: the Richmond Foundation is a co-founder of the Alliance for Mental Health: which brings together professionals in the sector, representing patients. We have produced a position paper, outlining an array of initiatives that could be taken to improve the mental health sector in general. The end target is to have a hospital which is within the precincts of the general hospital. That way, the issue would be treated for what it is – a medical issue, like any other – and it would help to lessen the stigma. We have been pushing for that, and it seems that the idea has been picked up. We have been told that there are plans being drawn up for the development of this hospital, including the medical brief. We understand that there has been some progress on that front... Concurrently, we are also proposing that community services are beefed up: resourced better, given more investment... that there are more community mental health clinics, for example. And more social support services, which would enable people to control and cope with their mental health conditions, without having to resort to hospitalisation. So things are moving, yes. But it’s going to take a while to catch up...