Discussions for the brain: How to get rid of the mental health/mental illness stigma?

Mental health continues to be a well-known and highly hidden topic amongst our society. Many people suffer from poor mental health treatment and lack of knowledge about the subject — mostly due to the stigma around the topic. WHO stated that nearly two-thirds of people with a known mental disorder never seek help from a health professional due to stigma and discrimination.

The Global Health Middle East also reported that 10 percent of people worldwide are affected and suffer from mental disorders, but few receive the treatment needed.

Mental health has also been a long-running problem in the MENA region where many people suffer from depression and anxiety. Nowadays, there is only one psychiatrist for one million people in some Arab states. For example, in Iraq, its population is made of 30 million people, yet there are only 100 psychiatrists available, according to Iraq’s Psychiatric Society. This results in high demands of help with very little help to give — which reflects many Arab countries.

As the same with most Arab countries, Jordan also lacks the support of receiving care on mental health and mental illnesses. According to the Jordan Times, around 25 per cent of people who go to psychiatrists in the Kingdom suffer from depression.

There had been many efforts to try and improve this, such as the creation of projects for mental illness patients and the constructions of psychiatric units by WHO and the Ministry of Health. However, in a country where the refugee influx is constantly coming in — who suffer from large numbers of mental illnesses — more help and less stigmatisation are needed in the country.

Source: WHO, HuffingtonPost, JordanTimes, and MHInnovation.

Speakers: What is your experience with mental health?

Jemman Ammary

Jemman Ammary is the founder of Autism MENA an activist group that fights for the awareness and rights of people with autism — especially children and their families. Jemman is a huge supporter of people with disabilities and mental health. She talked about her experiences with autism — especially with raising a son who has autism.

“My name is Jemman Ammari, I’m the founder of a MENA foundation Autism MENA. I started this NGO since four years ago. My son is ten today and he has autism, he was diagnosed when he was a year and a half — he’s ten this month actually,” she said.

“Essentially I left the country because of lack of services so when I came back I thought why not do something about this. It was hard, I cried a lot. It took me two years to go out and meet people and socialise again. Basically I refused any weddings and my husband would ask me why I’m not going and I would just say ‘I’m not ready to answer any questions.’ Until one day I met with the Minister of Education because I couldn’t find a school for my son and I said ‘my son has autism and he has no place to go, you have to do something about it.’ So that’s when I started doing all of it.

“It was the reason I had to leave Jordan basically for four years and then we came back. I had to leave the States because I didn’t have a green card or a passport so they asked me to leave. So we left and we came back here and it was hard to find schools. I literally went through all schools, private, expensive, whatever, and they all said no because they didn’t know what autism is, which was ok, but I was angry. It’s just I had three boys and it wasn’t ok to leave one here and one there.

“Then I woke up one morning and I went to one of the principles again and I said ‘if you say no, I will be the reason I will leave Jordan again, I don’t want to leave. Please take him, just try.’ I told her we would help her, and I didn’t expect much ‘just say yes.’ She said they didn’t know and it was a huge responsibility and I told her ‘don’t just take him and we’ll start.’

“Today at the same school we have around nine children with autism. We started the program, it was hard, it was slow, it was challenging but then my son became a case study, where every time they had a conference they would take my permission to talk about the experience and what medication they would take — all the little things.

“Recently I was a speaker at the Teacher’s Health Forum. We talked about the small little steps to take inside the classroom to accommodate those kids. And if they are inside the classrooms, it means they’re good candidates; all children are good candidates if they have the right resources.

“Even if we fight the government now — and I’m fighting the government now — at the end of the day it’s about human rights. Every kid has the right to an education. One lady came to me and said ‘Jemman, they accepted my child and they’re going to take him’ and I said ‘ok, but you don’t want him in a classroom because he’s going to get bullied, he’s going to be sitting alone all day, no one is going to work with him and the teachers just don’t know, they don’t have resources.’

“We are just not ready. All kids are good candidates, you just need to be prepared, it’s very hard but very doable. There’s a way to get there and it’s basically what we’re fighting for now. The right way is to get kids to get involved in society and if the government just gives at least 1,000 JDs for them now at early ages and early interventions, it’s better than spending hundreds and thousands later because the problem will become bigger and they’re going to need more resources and more help and then you’d be dealing with the whole family crumbling.

“Most moms are single moms and divorce rates are 80 percent, the TVs are always broken inside, etc. So one of the main problems we have here in Jordan is that they go to school at the age of six years old — that’s kindergarten. These are golden years for kids, this is when they can learn so much about behaviour modifications and social skills, they’re getting them ready to be in first grade.

“I’m not only talking about the private schools and the minority of schools here, I’m talking about all public schools. Public schools in Amman they have an average of four to ten kids, they’re on the streets by the age of six. So before the age of six years old, they would be either at home or on the streets, so when they come to school and there’s something wrong with them, the teachers tell their parents to take their children away. So we lost precious years between two and four to do something about it.

“What we do now is we raise public awareness about the early signs. We work with the newly married or new moms, that’s  basically what’s important now. Working around the government hopefully in ten years time.

“Today we have over 200 families that we help directly and indirectly with their kids and our social media platforms. We managed to somehow change how people look at autism and a lot of families came out of the closet and were accepting more.

“To start people talking about autism we started with a twitter account by tweeting the word autism in Arabic and then we moved into Facebook and we just finished conducting a one year research on autism matter in Jordan and over 30 focus groups, it was funded by USAID and we just started now a new project. It was about to raise public awareness about the rights of people with autism.”

For more information about Autism MENA, feel free to check out their Facebook page.

Ahmad Al-Eid

Ahmad Al-Eid is a pilot and marketing consultant who suffered from attention deficit hyperactivity disorder or commonly known as ADHD. Eid talked about his experience and how he had to deal with his symptoms in a society where mental health is not a well-known subject.

“My name is Ahmad Al-Eid, I work as a pilot for a private company and I’m marketing consultant and marketing manager for a company. First of I just want to say my experience as a kid with ADD/ADHD who grew up in a Jordanian school who had no support, who didn’t know what he had until years and years later. I would just like to start my story with you as a little kid who never thought he would end up to be a somewhat a successful pilot I would like to say,” he said.

“First of all as a little kid in a Jordanian system, if you were a kid and you were hyper and you want to ask questions, you can’t sit down, they always say ‘oh he’s just a kid, that’s what a kid should be — he should be talkative,’ I can’t focus, my main problem is I can’t sit down and focus on one subject. I always asked more questions, I always played around. Nobody really understood that and I was blessed with something else — I stutter too.

“You can imagine in a public Jordanian school how hard it was and at some point, my parents did an amazing thing where they put me in a Catholic school and the sisters there understood the ADD thing. Nobody understood the ADD thing but nobody was allowed to make fun of my stuttering, the way I talked, etc. That really helped. You won’t believe how much that helped to build my character and how much it helped me. It’s just the way I am, I was just built like this.

“I was blessed yet again, I got a scholarship at the age of 15 to the US. I spent two years over there. There I felt more at home because in the US people understand what it’s like to have ADD. The first day of high school in California the teacher sat down with me and he asked me whether I had ever done any tests for ADD and I answered no.

“I never thought about it after that but then again, it wasn’t easy. The way I discovered I had ADD was — I discovered it as an adult — I discovered it from a TV show. The guy kept talking about it and he had the same symptoms as me. So I started thinking ‘there must be something to this.’ So I went to a professional, she doesn’t want to share her name but she was an amazing doctor in Fuheis — she is such an angel. I feel she’s helped me in so many ways. She sat there with me, we talked.

“I wanted to make sure because I had my doubts. I sat with her, explained what happened and she literally told me everything about what was wrong with me — in a very healthy way. I didn’t feel like a dumb ass anymore. All my life I’ve been called ‘he’s dumb he’s slow, he’s not interested.’ One of the main things about me, I would lose interest so fast. I’ll be very excited for something, I want to do this, I want to do that, but then I would lose interest so fast to the point where the teachers would have to go and speak to my parents. They lost hope in me to be an A+ student, essentially they told me I’m not that bright and you can imagine what that does to a boy. To have someone tell you ‘no, there’s nothing wrong with you, it’s just the way you’re wired and you have to deal with it,’ was amazing.

“As a pilot, I’m not allowed to take medication — I’m not allowed — so she would give me exercises to calm down before I talk. One of my favourite ones would be before I would have to give a long talk, I sing a little jingle. Like Jingle Bells. It calms me down, I can speak without a problem and it’s just little exercises about how I speak to people; I used to have such a problem with girlfriends and keeping a relationship, not because I wasn’t interested but because I had so much going on in one time, nobody could comprehend all of that.

“However, my main problem, and I would give anything for that, I wish that our school system — you’re talking about 15 percent of school children in the US have ADD or ADHD — that’s a big percentage people — and I have worked with a lot of schools with volunteering and stuff and I can see a lot of kids have it and it’s so obvious.

“No one knows, the easiest thing to say is ‘he’s a kid, that’s what kids should do.’ So my main goal is I want to educate people more and have our government take care of that. It’s so easy to fix and if we don’t take care of it, we might have really drastic measures for our future generations.”

Floor Discussion: how can we normalise mental health?

Q1: What would you say is the hardest part of living with mental illness?

A1: First of all, I want to thank you guys, it’s amazing what you did. My brother had the exact same case, ADHD, underdiagnosed up to ninth grade, he was failing, and sadly my father is a doctor and that hit me very hard because he didn’t approach it in a way you expected him to.

My brother became very depressed of course and he thought he was a failure and later on, he saw on YouTube a guy who had ADHD and he thought that ‘I think have this.’ I’m in final year of medical school but I never took psychiatry at the time and I had my own things going on, so I wasn’t aware and was not able to focus on it, then he showed  me the video and I also thought that ‘yes, this is it.’ Sadly enough, the first reaction we got when we told my father that he needed to see a specialist was ‘no, I’m sure everything will be alright.’

That’s one of the things that really hit me in the face, so I asked ‘Why? You’re supposed to help him. Would you want him to fail school?’ We know he’s smart! And I actually called up a psychiatrist, I made an appointment for them and I told him we’re going to go on that day because we need to make sure. He took the test and he was full-blown ADHD. The first thing he said to me was that he didn’t accept it and didn’t want to tell anybody. I told him that he should be the example. If you’re being an example then people will follow, but if you’re showing that it’s alright to hide it, you’re making sure that nobody should know. It’s not easy but it’s one of the happiest days of his life, but he was shattered after that.

He took the test and he was full-blown ADHD. The first thing he said to me was that he didn’t accept it and didn’t want to tell anybody. I told him that he should be the example. If you’re being an example then people will follow, but if you’re showing that it’s alright to hide it, you’re making sure that nobody should know. It’s not easy but it’s one of the happiest days of his life, but he was shattered after that.

Other examples, I myself suffer from general anxiety disorder and depression and I actually took a year off medical school because I wasn’t able to function. I had intense therapy and in the beginning, everybody was asking why I just dropped out, out of nowhere and I didn’t talk about it because I haven’t faced it yet. Then, when I did, I actually told people and people actually did an interview on it and I was surprised by the responses, I saw a lot of people were more courageous to do the same thing as me. Many people would ask me where did you go, who is your therapist, what did you take, who is your doctor and I  was shocked, even people with me who were in university and were going to be doctors did not know that there are good therapists in Jordan. Some said they had even suffered from the first year and I have no idea where she goes.

Many people would ask me where I went, who was my therapist, what did I take, who was my doctor and I was shocked. Even people with me who were in university and were going to be doctors did not know that there are good therapists in Jordan. Some said they had even suffered from the first year and I have no idea where she goes.

The hardest part is basically when you feel you need to hide it. However, when you stop hiding it, it’s a relief, that’s what I thought. The pressure that you shouldn’t tell anyone.

A2: The similarities I had were that my whole family were doctors, my sister is a doctor, and my father is a doctor, so all of them had straight As and I was not doing the same thing as them. However, the one thing I was blessed with was that I had a very understanding family; a very accepting dad, very accepting sisters and even though they didn’t know what ADHD was, they knew something was wrong with me. 

I didn’t do really bad at school, I was an average student was because of the love they gave me. They pushed me, they had so much faith in me and I remembered how hard it was. I never ever till this day was able to sit down and just open a book but once you get over it, you feel so much better. When I told my dad we both cried, and he said ‘I knew, but I was scared to have a professional opinion about this,’ but he knew. And when I told my friends most of them laughed because they said they knew and that everything made sense after. The surrounding system for me was amazing and that helped so much.

A3: I had my first experience with mental health in Iran, which is where I am from. I remember my family thinking there was something wrong with me and some people saying that I was crazy and I didn’t feel crazy, but people were telling me that I was — even until this day. I was also diagnosed with GAD and depression and I think the worst thing is there is this consistent fear that one day it will knock you down again and that’s the scariest thing. Again though, I guess it’s just about knowing what builds up to that process. It is scary every day.

A4: Just have a good support system because on my bad days I don’t have a normal bad day — on my bad days, I’m really down. And having these people to tell you everything is going to be ok, you need these people.

A5: Four years ago, I didn’t know what mental health meant, if you said mental, I would have thought of people being locked up in mental institutions and that’s the only thing I knew about it until I got to Jordan. I have a friend who goes to the same university, he’s from Thailand and I noticed he didn’t act like a normal person, he was sick in his mind. Within a year he moved around to six different places, he kept moving. I got close to him and I ended up wanting to see a doctor for him, we talked about it —  I even talked to his mom in Thailand and they tried to explain to me that he is mentaly ill — so that’s  when I found out about mental illness. I’ve been living with him for a year and two months now and I tried making him feel more comfortable, I started sharing secrets with him, tried to make him feel comfortable and his mom wanted me to stay with him. It got to a state where he had a breakdown, I had to babysit him for four days — he wouldn’t stop crying then he got better but it’s still scary. I would like to get some insights from the people here because I’m still living with him and I’m not sure what to do.

A6: First of all, your friend is very lucky to have you, but you need professional help. What you’re talking about, it’s way too advanced than what only love and care can give.

Q2: Why do you think there is such a stigma with mental health or mental illness?

A1: I think a lot of times we go through this, like why are they hiding the kids, why some of the families don’t even know these people have a kid and I think it’s just because they don’t know and they fear and don’t have the support system. If I want to relate from my experience, the first six months when it happened, I was like a chicken inside a room. I didn’t know where to go and who to talk to, is it ok to talk about it, is it not ok? Because I didn’t know, I feared and I hid and crumbled in my own world. Then you start learning and reading and it’s scary and the denials are big. With autism, there are such different spectrums — one’s mild, one’s severe — and they have all these labels just to sugarcoat what they really have so they can better introduce it to our society. The biggest fear was having my son go to school and him getting bullied and I guess I was wrong. He’s honestly the most popular kid at school and they were curious and they asked a lot of questions and I had complaints from mothers about why they have a child with autism sit next to them at school. Some parents complained about why they were at the school — they spent so much money for their child to be at an Ivy League school.

Then when I go back to the question, the support and talking help to create a better place. You just need to start talking about it, really. Whatever you want to say, just start talking about it. Create an account, start a movement, and even with your friends, just let them know why you’re talking about it, you don’t even need to tell them about your experience, just talk about it in general. The denials are big and many people throw events and they would say I could come, but my son is not allowed and this is because these people don’t know. From working with a lot of moms from different backgrounds some of them don’t treat them right and some of them do. Once they have a better understanding of their child and they know the facts, then they go out with their children and that’s when they go out and start fighting the rights of their children, so I feel it’s because of the lack of knowledge and education. So you can start with even just a tweet, a Facebook post, or starting a group like this.

A2: I absolutely agree, I think why there is such a stigma regarding mental health is because people just don’t know or don’t have the knowledge. I mean a lot of people don’t even know the difference between mental illness and mental health, to them it’s just all one category. It’s just like physical health, I feel we need more subjects like that about mental health, because it’s just as important, you just can’t see mental health and it’s harder to notice the symptoms. People just don’t know anything about it and I feel not enough research has been done about it, especially compared to the physical illness that has been happening in the world. People usually would choose things that they can obviously see rather than something they can’t see.

A3: Like you guys said, there is such a wide spectrum about mental illness that it’s hard to diagnose and if people can’t see it, they don’t know what to do about it.

Q3: What is the difference between mental health and mental illness?

A1: For me, mental health there doesn’t need to be anything technically wrong with you, it’s just being happy, about being healthy mentally. You just think of the best in everything and you bring it up and you focus on it. It’s so easy to be depressed and it’s so easy to be negative, to have a good mental health you just need to push yourself, make it happen, fake the laugh — sometimes you just need to push it, you don’t need to be happy. Surround yourself with people who’ll support you. People can easily bring you down and negativity just surrounds us and it’s not our fault, it’s just our culture. While mental illness, you actually have a problem and you need to work on it. It’s not just something you need to push, you need to work on it and sometimes you need medication.

A2: Mental illness is where there is something wrong with the wiring of your brain and you may need professional testing. That’s when you need to go further and sometimes take medication. It depends, sometimes, it’s mental illness mixed with mental health. If you can’t physically test it, then it’s mental illness, like for example with autism, there are no physical tests that can help you to identify this. We use testing tools like the apply behaviour analysis where we test certain things where we can see whether the person is under the spectrum.

A3: I have a comment about the difference between mental health and mental illness. It’s not about faking a laugh and so on because emotions are natural, we are not trying to hide our emotions. From a medical point of view, mental illness is just an emotion we have —  like depression — accept the emotions last longer than a normal period of time. If somebody faces the death of a loved one then it’s normal for that person to be depressed for three months, but if it goes over that three months, that’s when something is wrong. So sometimes it’s about a period of time and how intensely you experience the fear and for mental illness, you need to be diagnosed with a certain period of time and it depends on the symptoms as well.

Q4: How can we reduce the stigma of mental illness?

A1: Just talk to them and educate them. I know psychiatry is very big and there are a lot of things to talk about, there are things that need medication, there are things that only therapy can fix, and if they are guided properly, they will be able to function. The more you talk about it and if  you have an example, then that would be better.

A2: Talking about it is so important, because the more you talk about it then the less it will become taboo. There’s an exercise we do where we tell people to write down what they know about autism and if they don’t know anything then just write anything that they’ve heard about it, the important thing is just to talk about it first. Also for the media, it’s also very important to know your sources. If you read an article about this please look at the sources of where it came from. Don’t tag or share anything if you’re not sure it’s the right information.

A3: In 2014, I went back to Irbid and I want to talk to children about mental illness. I went to my old school and the schol laughed at me and said I was going to waste my time. I have a cousin who went to that school and I wanted to be there for him. I got rejected from three flight schools and look at me now, there’s nothing wrong with having a mental illness.

Brainstorm: sustainable efforts in reducing stigma towards the topic of mental illness and mental health

Team 1

The idea from our team includes one initiative that we’re already trying to do in Jordan. I work on a campaign for mental health awareness where we go and target schools to talk about depression and anxiety and we agreed that the best way is to target something that’s already existing so that we can expand and the more people we have the bigger the movement. Since it’s already there we don’t start from scratch — although we’re still very new — we’re called Hareb which means fight and we would love your support. We have three main goals which are, fight the stigma, fight for awareness, and fight the disease itself.

We also need a suicide line in Jordan and insurance for psychiatry, so these are the long-term goals.

For more information about Hareb, check out their Facebook page.

Team 2

We started by considering the policies, community, and capacity building. First of all, we need to start by analysing and considering that people have something to tell. So letting them tell their story and understanding that other people are also suffering and going through hard times. Next, in supporting these people, you need to support and encourage them to be the best they can be, which you can also do by encouraging them to get over their fears and face society. Also, we need to stop labelling people and just treat them like normal people. We also need support groups and consider using social media platforms and using hashtags. Other examples are like Sesame street where they introduced this new character that had mental illness and this would be a great idea for younger generations. It also normalises the problem on TV. Also, we need to start introducing mental health to the school system, just like they do with physical health.

Essentially there’s this top down and bottom up approach where we start with policies in the middle of the society. An example of this is where there is a specific task force where their job is to lobby the government or certain policies. Policy buildings which include building what we’ve got on the ground, so medical professionals and training without over-medicalisation and understanding when we can use holistic therapies and then there’s the community approach — where a lot of us mentioned — like social media and educational campaigns. Education groups where people can talk with people of all different backgrounds to be educated about mental health. Especially for me, coming from London, a black male from a low socioeconomic background tend to be more prone to mental illness. We also, however, need to reach everybody from all backgrounds and all generation, for example, my grandfather probably doesn’t use Facebook.

The new law for people with disability was passed and the law actually was going to be opposed in Parliament and it covered investment and money within the mental health sector and the new laws won’t protect them. We’re talking about all centers in ten years will be shut down and it’s all about inclusion and education; a lot of people were fighting the new law and the community — a small community came together. We made a WhatsApp group and we managed to get an appointment with the legal community and we were very vocal about it. So it doesn’t matter, you don’t need to be a big organisation to create change. We need to educate to help change the voters.

There are also AAA groups where they keep things anonymous and sometimes people just need somebody to listen.