Agoraphobia: "Better explain what it is so that there is more empathy"

Hello @Keanebcn, you agreed to speak to Carenity and we thank you for that. 

First of all, could you tell us more about yourself?

Of course, my name is Iván, I'm single, I'm 47 years old and I live with my two cats in L'Hospitalet de Llobregat, a town in Catalonia. Unfortunately, I have almost no direct family left, just two cousins and they live outside Catalonia.

I like music a lot and I also like to keep up with the latest news. Detective series in general keep me very entertained, especially Victorian ones.

You suffer from agoraphobia, a type of anxiety disorder, how many years have you been living with this illness? Who diagnosed you with it? What led you to seek help?

Too many already..., for over 20 years.

In 2000, I was diagnosed by the psychiatric department of the Seguridad Social for agoraphobia with anxiety attacks, and again in 2020 but without anxiety disorders. I had the same diagnosis in private psychiatry.

Today, the psychologists and psychiatrists of the Seguridad Social, in their new reports, evaluate that I suffer from an unspecified anxiety disorder, which I do not agree with at all because I suffer from the same disorder as 20 years ago, aggravated by a generalized anxiety disorder (GAD), diagnosed by the private psychologists and psychiatrists as well as by my family doctor. A new report issued last May again diagnoses agoraphobia without a history of anxiety disorders, but refers to my previous clinical picture with some inconsistencies in my opinion and that of a psychiatrist seen in the past.

I had seen this psychiatrist several years ago but I have little recollection of it. It all started on the beach, I was lying in the sun and had my first panic attack, although I was confused and didn't know what was happening to me at that moment. From that day until today I have never been able to do it again. I've tried to be in that situation again many times, but my reaction is always the same.

What is your daily life like with this phobia? What impact does it have on your personal and professional life? What difficulties do you encounter? 

The life of an agoraphobic person is sometimes a real ordeal, because the symptoms are hard on the mind, it is a permanent discomfort. It is disabling, it limits you, totally or partially, for work, love, social activities in general. In short, in all areas of life without a doubt, because you end up avoiding many situations in your daily life.

As far as my professional life is concerned, I had to stop going to work because I couldn't do it anymore.

But the Labour Inspectorate, which I tried to contact even though it is not compulsory, and the mutual insurance company, which pays you once you are on long-term sick leave, and the social security system, which in Catalonia is called ICAM (Institut Català d'Avaluacions Mèdiques) and which is independent of the rest of Spain, told me that I was able to work, whereas it was and still is unthinkable!

I would like them to give me a lie detector test to show them that they are not right about everything and that it would certainly not be the most orthodox thing to do.

I had a hard time getting this job, which I loved, and had to go through two interviews to get it, but at some point I realised that I was having panic attacks very often and that it was putting my life and the lives of others at risk when driving, as I had to go to several cities in the course of my working day as a field technician.

The difficulties that an agoraphobic person faces are not being able to move around, even within one's comfort zone, since sometimes, depending on the person, one will not even be able to leave one's house for a while.

One can assume that with the help of work from home and new technologies, one will be able to develop a better strategy as far as possible because otherwise one still has to travel for work and/or one has to move as was the case for me.

I remember that at the end of the working day, sometimes, if we had time, we would meet with colleagues at the entrance of the company to give us a few minutes to talk about how the day had gone. For myself, on a few occasions, I managed to stay out of the vehicle despite the fact that I felt safer inside. I never said this because I was ashamed of the fact that they considered me to be eccentric.

"I don't blame them and part of what we should be doing is trying to explain in general terms what agoraphobia is so that there is more empathy for the people involved and they know how to cope.''

The problem is that when I was looking for a job I never said I had the disorder because I am not legally obliged to, although until now I didn't know.

Sometimes, even if you have this desire to work, you run the risk that one day all these negative experiences will turn against you and you will regress on all levels.

You should know that as a general rule, an agoraphobic tends to suffer from GAD (generalized anxiety disorder). This is the case for me and I find it extremely difficult to work the way I do with the pressure I feel in most situations. Whatever it is, the same thing happens to me regardless of the context. It can lead to short or long term memory loss, there is an obsessive and sometimes also depressive component to it, you get trapped in this spiral of inefficiency and you stop valuing yourself most of the time.

We have to take into account that the drugs we take can also have repercussions, i.e. various side effects that are sometimes not at all pleasant.

Could you tell us more about how agoraphobia manifests itself? What triggers your attacks?

The attacks are triggered by irrational fear, sometimes in a hyperbolic way, paresthesias in the hands, legs, difficulty in swallowing, tingling in the upper external part of the head and inside, sometimes as if liquid was flowing from one side of the head to the other, tachycardia, loss of control, sweating, breathing problems, dizziness. I also have digestive symptoms, diarrhoea, vomiting, etc

Sometimes you can even think you're going to die or go mad!

I have been suffering from insomnia for several months, I take pure melatonin and I try various methods, but so far, no results. I've been through this before, and was able to recover, but I've relapsed again with all that this implies for daily life, it doesn't really help.

How do you deal with agoraphobia-induced crises? Is there a treatment?

The attacks and the fact of writing these words, even if they are more than liberating, make me more anxious. It's like a victim in a trial who has to relive the unpleasant experiences that happened.

My crises are really very radical because, as I answered the previous question, you feel like you are literally going crazy, you can't think clearly and you are wrapped up in anxiety, which completely neutralises your own person, your own being. Sometimes you stop being a part of it and you don't even recognise yourself as what you are, it becomes an irrationality through a mental trap that you can't correct in the first place.

And I say this because when the moment of aid, in my case conventional medicine, comes in, whether it's through a clonazepam tablet or diazepam, within a few hours everything returns to normal, a normality that is imposed.

The treatment to be followed, whether or not you are taking medication, is psychology and more specifically cognitive behavioural therapy, which is carried out in a more structured way. In addition to that, it is recommended to practice yoga, mindfulness, any kind of relaxation involving breathing, etc.

What do you think might be the cause of your agoraphobia?

During my military service, my mother told me that I had called her and that I was very scared when we had to go to the shooting range to train with live ammunition. This was in addition to a not very good childhood and the fact that I started taking drugs in a short period of time in my youth. I should point out that I have had cases where a single joint or a piece of marijuana cake at an innocent birthday party could give my psyche a bad trip and leave me permanently scarred. On the other hand, I have known and know people who smoke and have smoked joints daily all their lives and are very happy. Also, people who used cocaine for years, stopped and are now bank executives.

You talk about your experience with health staff, psychologists, unfair reports, etc., can you tell us more about all this? Why don't doctors recognise your agoraphobia? What is the follow-up by the Seguridad Social, what is its purpose?

After I asked for explanations and asked them to change their records, they would not take care of me anymore. Even in psychiatry, I was discharged several months ago and I had to fight to get them to start therapy with me again because they had left me in a vacuum where I was having a very bad time. In psychology, they follow you every 3 months and in between, nobody cares about you, not even by a phone call, which I find unheard of to put it politely.

We are just numbers and prisoners. If someone disagrees or thinks differently, that is their right. Not all doctors are the same, of course, but that is generally the case, at least in the field of mental health.

What do you think needs to be done to start finding solutions to all these problems?

I don't have any preconceived ideas, but they should learn about specialised private centres where the care is better. In Madrid, for example, there is a special centre for agoraphobia, but it's obviously better to live there because there are group meetings and they accompany you at all times in your recovery, but here in Catalonia, for example, that doesn't even exist unless you pay...

For years there have been clinical studies with realistic (nowadays more hyper-realistic) computer technology, using a computer that has the function of being able to relive experiences to evaluate and correct your symptoms. I joined a Facebook group at a university in Barcelona, but they never contacted me.

Do you feel supported by your relatives? Do they know what agoraphobia is?

I think they do now. There was a time when I didn't know how to explain it to them or they didn't want to see the importance of it.

At the beginning, I think that the relatives need time to adapt and understand, but we have to insist on what our disorder is, because it exists and it is real.

As I said at the beginning of the interview, I am alone, but if you have family nearby or if you live with your parents, grandparents and others and you feel understood and loved, it must be great. To be able to hold them in your arms at such a difficult time and be able to unburden yourself.

In my case, what I do is call the emergency services to talk to a psychologist and try to calm myself down, there is also another resource which is to call the 'Telèfon number of the Esperança' where they take care of you 24 hours a day.

How do you see the future? Do you have any plans? 

I would like to think that everything is fine, but realistically, I am convinced that after more than 20 years with this disorder, unless I have an accident and suffer amnesia as a result, it will be virtually impossible for me to recover.

There is, however, a way to deal with it that is quite drastic in its resolution and that is Electroconvulsive Therapy (ECT), much safer and less invasive today. Unfortunately, in my case, it is denied because I would have to be suffering from a different disorder than the current one such as bipolar, schizophrenia or something else.

What advice would you give to Carenity members who also struggle with an anxiety disorder such as agoraphobia?

What a difficult question!

In principle reading helps a lot to process everything that happens to you and if you have money you should definitely seek treatment from private psychologists and psychiatrists. If not, you will have to be stronger and face public help.

Do not hide what is happening to you and ask for understanding at some point from people you do not know.

Remember that we can also go through depression but that life is precious even if this disorder does not leave you with many happy moments. It will also depend on each person and how long they have been suffering.

Treat agoraphobia as soon as possible because it is very tiring and today it is not like 20 years ago, science and medicine are progressing to help us.

"Psychology heals but medicine, in my opinion, is essential''.

Any last words?

I wanted to say that in addition to agoraphobia, I unfortunately suffer from phagophobia, brontophobia and essential hypertension. I have a declared disability of 34%, in 1 year's time I will have an examination to increase it and also a hearing to determine my partial or total incapacity for work. Even though I was given the opportunity to change sectors, I suffer from chronic low back pain with a herniated disc which means I can't move weights and even in the IT department I couldn't do my job because of the anxiety I still suffer from today. All this even if they had offered me double or triple my salary, to be clear, it's not about the money, the agoraphobia associated with GAD, doesn't allow you to act with a minimum of professionalism, performance and efficiency. I was recently offered another job and I turned it down for the same reasons.

Even when you try hard, the anxiety is not always in your control, it appears out of nowhere. You can get away with it for a short while if you are heavily medicated, but being able to carry out a job is impossible. Medication can also make you drowsy and driving and operating machinery is not recommended.

Many thanks to Ivan for his testimony! 

Was this testimonial useful to you?   

Like the article and share your thoughts and questions with the community in the comments below!

Take care of yourself!