We at ROAR aim to be inclusive of all members of the community and this month we would love to hear from anyone who has experience around these issues.
To that effect I would like to share a snapshot of my own experience, from substance use to gainful employment whilst dealing with a ‘hidden disability’.
In my early twenties I was diagnosed as having panic disorder with agoraphobia.
Agoraphobia is by nature a very difficult condition to explain the official description reads as follows;
Agoraphobia is a mental and behavioural disorder, specifically an anxiety disorder characterized by symptoms of anxiety in situations where the person perceives their environment to be unsafe with no easy way to escape. These situations can include public transit, shopping centres, crowds and queues, or simply being outside their home on their own. Being in these situations may result in a panic attack. Those affected will go to great lengths to avoid these situations. In severe cases, people may become completely unable to leave their homes.
However, this by no means covers the daily battle, the nuances and all the effects of this life limiting condition, and, in many ways, it is such an elusive problem with many facets which makes it so hard to treat.
It is estimated there are around 7 million people in the UK who suffer from some form of agoraphobia with more than a million people housebound.
It is no wonder there was limited treatment available in the early 90’s for this complex condition and to get the treatment for agoraphobia I needed to travel 10 miles, needless to say if I could do that, I wouldn’t have needed the treatment in the first place and so began the self-medication.
This developed into a 30-year battle with alcoholism. As I write that and see the years that were, I don’t want to say lost, but on hiatus maybe? It makes me feel that I am writing about someone else because how did I ever manage to live my life behind closed doors with only the comfort of my friend alcohol. That’s not to say there were not better times, a journey like this is never linear but I am genuinely amazed that I made it this far without giving up completely.
If treatment options were limited for agoraphobia, then treatment options for agoraphobia with alcoholism were non-existent. Any help that was offered would mean me attending somewhere a fair distance from home sober and that just wasn’t a feasible possibility for me. I am sure that it is not easy to understand such a complex condition and neither do you have to but there are millions of people around the world who live with this daily to different degrees and it is still woefully misunderstood and difficult to treat. By the nature of it agoraphobia is very hidden with many turning to substance use just to go about daily tasks.
By the time the COVID pandemic came I was literally dying of alcoholism. It had become normal to order Vodka from the shop and have it delivered within half an hour, in many ways everyone’s new normal was how my life had been for years, the world had joined my gang and I wasn’t excluded anymore. The easy accessibility for alcohol had me drinking two bottles a day and I was praying each night not to wake up the next morning. I was desperately ill and wished for the end.
How dark it is before the dawn. With the shutdown of most in person public services there were two resources that became accessible to someone in my position. They were online 12 step meetings and Forward Trust’s online treatment programme and without them I would not be writing this today. I was detoxed at home; it is very important to seek medical detox if you are physically addicted to alcohol as doing this alone can be fatal. I then embarked on Forward Trust’s 13-week online treatment programme and 12 step fellowship meetings. It was not easy; I was still very weak and very poorly, but I had something I hadn’t had in a long time…. Hope. I was treated equally and made to feel like a real person at long last. It no longer mattered what my limitations were, it was what I could achieve that was celebrated and encouraged.
When I finished the day programme I came back and volunteered for over two years, where I built my confidence and learned many things, most of all that I am worthwhile, I am useful, and I am a real person! I have built up a network of new and wonderful ties in recovery which has led to what I hope to be lifelong friendships.
What I have gained personally is immense and four months ago ROAR employed me as their coordinator, and I cannot tell you what that meant and means to me. They saw past my limitations, made reasonable adjustments and embraced the experience I can bring.
I feel honoured that I can be part of an organization that embraces diversity and aims to be fully inclusive no matter what. Our happy band of volunteers all have lived experience around many issues and will always be willing to hold out the hand of friendship to those that need it.
As for me I still have agoraphobia… always a work in progress but I no longer have to use alcohol to manage my day-to-day life, I now have a supportive community of people willing to go that extra mile to help out. Anyone who is struggling can have that too, you just need to Reach out and Recover!
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