Mother of all Lists — My Husband The Agoraphobic

My Husband The Agoraphobic

How does a once outgoing man become someone who struggles to go a short distance from home without being plagued with anxiety? This is what author Sarah Perrins faced with her husband.

Over the years, whilst learning how to deal with everything, I was selfish. I was angry. I was properly p***ed off. I still am to a point. Not at him, but just at how cruel life can be. Nobody wants this, and if it wasn’t for this mental illness, we would all be happier.
To this day we haven’t been on holiday as a couple or a family.
We’ve just started to go on day trips that are close to home, and as a couple, we’ve been out on a handful of dates in 9 years. I know that in the grand scheme of things none of thatreallymatters but it does sometimes, especially because it means that we don’t get to spend time together as a couple, instead of as parents. Not having that alone time, can push your patience and relationship to the limit.
The financial strain this put on us has been pretty intense. After he left work 7 years ago, it was hard to imagine how we were going to cope. He had to apply for benefits, in particular ESA (Employment and Support Allowance). It took months before the Department for Work and Pensions recognised Agoraphobia as a serious mental illness. After several letters from various doctors and his councillor, and after endless hours of phone calls, they finally believed him. Meanwhile, I continued to work full time to do what I could to help us all cope.
Our eldest daughter, who will be 8 this year, has grown up with all of this. She knows that if we go to the beach, or somewhere far from home, Daddy won’t be coming with us. She still wants him to, but it’s second nature for her to go without him and not really question why.
Sometimes she gets upset when he can’t come with us to various fun places, but like all children, she’s very resilient. We balance things out with her Dad taking her to places nearby, like Music School every Saturday morning, and I take her and her little sister to places further away, like Disneyland this winter.
In the end though, what I’ve really learnt is that mental illnesses can affect everyone. I was, I’ll admit, ignorant to how much it can affect a person, and how incredibly difficult it can be for that person to explain how they feel. Having patience and even just trying to begin to understand what that person is going through can go such a long way.
Every day is still a struggle for my husband. Sometimes he believes that he’ll never fully recover, and that he’ll be this way forever. Sometimes I worry that he will, but I don’t let either of us get too down about it. Staying positive even on the worst of days helps us get through it. I know he will get back to his old self, free from the restraints of Agoraphobia and all the s*it that goes with it. We’re both just taking it one day at a time.

Looking at my husband you would have no idea. Mental illness can be so well hidden by a person if they choose to hide it.

Before my husband developed Agoraphobia, I had never heard of it. I had no concept of what it meant, what could cause it, how to treat it or how to cope with it on a daily basis. It has taken an awfully long time for us to reach a place of mutual understanding regarding this illness. Now I don’t ask him to go to places with me or the girls because I know he can’t, and if he can then he will without the need for me to ask. It’s been really long, difficult journey up until now, and it’s one I know we will all be incredibly happy to see the back of when he eventually gets better.
If you don’t know, and there’s no shame in it if you don’t, Agoraphobia is the fear of going outside. There are many different types of Agoraphobia and my husband suffers from “Distance Related Agoraphobia”. This means he can go so far from the house, but then becomes irritable, has sudden panic attacks, anxiety attacks and the onset of severe IBS. He has to get home as quickly as he can. Some kind of fear sets in which he cannot rationalise or justify, he just has to be back in the safety of his home, where he is surrounded by familiarity.
He had to leave his job before he was diagnosed because the stress of travelling 20 minutes to work, having to stay there, so far away from home and then travel 20 minutes back again. It was making him so ill and anxious. He hasn’t been able to get back into work since and I think he’s worried that if/when he does, the Agoraphobia will come screaming back into his life and he will have to start the healing process all over again. He is slowly getting back on his own two feet, but it’s a slow, arduous process.
I was totally unprepared to look Agoraphobia in eye when our daughter was born in 2010, when I was just 20 years old. My husband, even less so. He went back and forth to hospital to have endless tests, and after 18 months of wondering what the hell it was, he was finally referred to a councillor. The first councillor he saw wasn’t experienced enough to handle my husband’s case so he tried a different councillor, and another, and another, until eventually he found a man who he clicked with, who understood the issues he was facing and knew how to help.
He was told that the stress of having a new born had triggered it.
He suddenly wasn’t in control of his life anymore. The baby had taken over and his brain just couldn’t cope with it all, so it took over control of his ability to leave the house. It’s hard to understand, believe me; I’ve spent a long time trying! To be honest I don’t think my husband understands it fully either. Unfortunately, this wonderful councillor had to move away to a different practice that was too far for my husband to visit.
The last few years have been a huge (ongoing) journey for us as a family, and for us a couple. But, first and foremost it’s been the most challenging, trying and difficult time for him. He was, and still is to a point, the most sociable, outgoing person I’ve ever met. He’s the complete opposite of me, and if it wasn’t for his shining personality I’d probably still be stuck in my shell. I’d imagined a perfect life for us, as all couples do, but mental illness doesn’t give a s*it what your plans, hopes or dreams are. Anything we had planned now has to wait. The is no deadline for this to end, we have no choice but to wait for as long as it takes.
Looking at my husband you would have no idea. He’d never tell you he suffered from Agoraphobia, or the IBS, panic attacks or anxiety attacks. Mental illness can be so well hidden by a person if they choose to hide it. I know he doesn’t like to talk about it because more often than not, the people he talks to can’t understand it, and he doesn’t blame them.
Mental illness can be impossible to understand from an outsider’s point of view. I find it so hard to read him sometimes to gauge how he’s doing, but I’ve learnt that all he really needs from me is understanding and although sometimes I feel totally in the dark with how he’s doing, I just have to deal with it.
You need to have an endless amount of patience. It’s a difficult concept for anyone to wrap their head around so dealing it with one day at a time is SO important. One day he can feel almost completely back to full health, and other days he can’t leave the house for a minute.
My husband once described his Agoraphobia to me like this, “Imagine if every time you opened the front door there were millions of spiders outside. You wouldn’t leave the house”. And he’s right. I wouldn’t.
It’s been hard for me to cope with at times. Although I know it’s much harder from him, the strain this put on our relationship was almost palpable at its worst.
Wrapping your head around someone else’s mental illness is extremely difficult, particularly when it’s not such a common illness and it’s not in the spotlight as much as others.
Speaking up about it really did help. My husband is a closed book. There is no way to know how he really feels but he did acknowledge he needed help and after several referrals to less experienced councillors, and others that he just didn’t click with, he went to see a fantastic councillor. Over the years they worked together to try to recognise, understand and overcome his triggers. He’s tried different mental and physical exercises to find what works best for him. Now he’s moving forward with the tools his councillor gave him so he can continue to progress on his own.