Although this website focuses mainly on the positive impact creativity can have on both mental and physical health, the interest in my personal story tends to focus instead on one element of my many challenges – not leaving home for 986 days.
To briefly explain, what started as a number of problems mobilising myself physically because of a genetic connective tissue disorder, degenerative disc disease and arthritis in my pelvis, has turned into nearly 3 years stuck indoors. While the original problem was clearly physical, and using the wheelchair and crutches was making it hard to leave the home, the challenges I face over being indoors are now are also mental.
My version of Agoraphobia
Agoraphobia is more common than most realise, although stereotypically it’s assumed agoraphobic people only have problems being in crowds or large open spaces. These elements of Agoraphobia correct (and can be very disabling), but there are many more challenges that make it so complex. For me at least, it’s complicated to live with but easy to explain. I panic when I’m not in my ‘safe zone’ and this happens for a variety of reasons.
From a mental perspective the main stumbling block is my fear of other people. Judgement, comments about my wheelchair, whispers, anger, basically any negative emotional actions, even if they aren’t directed straight towards me, will cause panic to rise.
Bumping in to people I know from the past might sound like a positive thing, but for me it’s scary. The way I look has changed, my confidence is at an all time low, and my physical challenges are becoming obvious. Saying hello and being interrogated by someone from the past about my differences is my worst nightmare.
Finally there’s my health anxiety, which makes me fearful that my symptoms will flare up publicly, causing me shame and embarrassing the people I’m with.
Frankly, I just want to be left alone, so the only place my panic can dissapate is my bedroom, which is where I’ve been for all this time. It’s a way of protecting myself, and although it’s worked, it’s completely destroyed my life, and impacted the lives of my partner and daughter too.
This all started about 6 years ago, and it was a much smaller issue. My safe zone was my hometown. If I was here then subconsciously I thought I’d be ok. After a couple of years, when I started relying on the wheelchair for trips outside, that safe zone became more specific, with only places in my hometown that I knew well being branded as my safe bolthole. Just a few months on and I’d only visit those places with my partner next to me. Gradually everything shrank until 3 years ago I stopped being able to go anywhere at all.
Agoraphobic impact
The impact of being agoraphobic isn’t properly considered or understood by most branches of the medical profession. Many doctors and nurses I’ve had contact with (outside of mental health services) have made careless comments about ‘fixing the problem’, suggesting that arranging transport or having my partner with me should make it possible for me to go out. This has left me unable to shake the idea that I’m useless and a burden. Although their suggested solutions are helpful and might be necessary one day, they don’t solve the issue, and I’ll try and explain why.
Extreme social isolation is a horrible thing to experience. Loneliness creates mental and physical symptoms that are complex to unpick, and usually take time. Repairing social isolation isn’t as simple as leaving the house again. For example, I haven’t had a ‘chat’ about the weather with someone for years, I haven’t bumped into an old colleague in the shops for longer, and I can’t remember the last time I asked someone for help while browsing supermarket shelves or buying a coffee. These regular interactions happen to a typical person multiple times each day, but when you lose them completely the idea of trying again is like an imaginary mountain to climb.
And where do you start? How do you make new friends and test your conversational metal at the age of 42? Long story short – the only way out is to jump out of the frying pan and into the fire (or start to burn in the frying pan if I don’t try).
Now, socialising is probably an obvious difficulty for someone who’s been indoors this long. However, one of the additional barriers that’s overlooked is environmental changes.
I know from my partner that, locally alone, the outside world has changed enormously since I last closed the door behind me. My Panic DIsorder causes me to become extremely anxious at the drop of a hat, so the idea of local streets, shops, roads and the general community have all changed beyond recognition is an overwhelming one. I’m getting sweaty just typing this, and outdoors it’s likely I’ll have a panic attack as a result, which leads me to the final issue…health related anxiety and embarrassment.
I’ve been told many MANY times that I shouldn’t be ashamed of my mobility aids, and that seeing someone use a wheelchair is commonplace wherever you go, but that doesn’t stop me feeling a deep level of embarrassment about them and about my lack of ability too.
When I last ventured outside I was subject to confrontational situations thanks to the discomfort of others, and it always left me feeling ‘less than’. Questions from strangers about why I need the chair, comments about my size (I’m plus size, so (apparantly) using the chair made me lazy) and when using a bus, a woman stood so close to me that her handbag hit me in the face multiple times. No apology, no offer to move slightly – it was like she couldn’t see me. I felt awful after every encounter.
Going back to my environmental example above, if I was to panic, if an attack started and the symptoms became obviously visible, I’d be absolutely mortified. People around me would panic too and, even with my partner beside me, I’d feel incredibly vulnerable.
My only solution to all these situations? To return to the safely and silence of my sanctuary at home and never come out again. Simple.
Starting the journey – graded exposure
It’s clear from the evidence that being stuck indoors, whatever the reason and however long, can’t be changed by simply crossing the threshold and becoming what others label as ‘normal’ again. That’s a biased opinion from those privileged enough to be on the outside (literally) looking in. The barriers agoraphobic people face can be huge, and crossing them might look easy, but it takes time, patience and a huge amount of courage and trust in both yourself and those around you. In some cases, it also requires help…mine included.
Every new year I’ve promised myself a selection of events over the coming 12 months that’ll start my journey back into the rest of the world. But with every passing annum I failed every task, and the new lists of special wishes got smaller and smaller. This year I made no promises to myself at all, and I felt pretty futile as a result.
The NHS aren’t able to offer support that helps someone like me to reintegrate into the community. Don’t ask me why, it seems incredibly odd, but this type of help doesn’t exist where I am (South East UK). Thankfully there are charities and something called ‘social prescribing’ (accessible via your GP) who can support, and over the course of the last 12 months I’ve been sat in their waiting lists. At the end of last year I finally reached the summit!
Two ladies from local organisations are supporting me to move my life in a more positive direction both physically and mentally, and (as they keep telling me) it starts with small steps. Step one – leave the bedroom for our next meeting and sit in the living room instead.
Engagament, at first, was difficult for me. I found the questions and ideas confronting and I didn’t feel able to trust anyone. Over time (it’s been about a month) I’ve started listening and valuing the input of both ladies and feel able to talk openly to them – something I wasn’t sure I’d ever be able to do again. They’ve never judged me for my situation, and somehow see good things within my life, not just someone who’s limited in many ways.
Even on my worst days talking to them about the recovery plan, about graded exposure, and about what I want to achieve in our short time together, leaves me hopeful that eventually this sentence will be over.
The only sad fact (and one that kinda adds a new problem) – the support from these people is time limited, so rather than being able to rely on them, I constantly have to remind myself that one day soon they’ll be gone and, obviously, I’ll miss them.
How long do I have to make the change? 12 weeks. No pressure then.
Recording my journey
So, in conclusion, as there is so much interest in my long-term life indoors, and as it now seems I have a chance to change the status quo, I’ve made the decision to record any related events as the next 12 weeks unfold. Any successes, failures, important moments and any ideas that might help others, will all be detailed in my blog and on a dedicated My Agoraphobia page.
Wish me luck…I’m gonna need it.
One final thought…
While telling me they are unable to offer agoraphic recovery support, NHS workers were the ones also telling me these alternative charitable services would be able to help. On initially contacting both they were quick to tell me that, while they are happy to support me, I should be getting long-term help from the NHS to (basically) help me finish the job. For a while I found myself frustrated that I was in the middle of an administrative cluster-fuck that made no sense at all. A push pull situation with no possible goal I can aim for.
In my opinion it’s clear the NHS need to offer some sort of intervention in such circumstances, rather that passing the buck completely to these services. What the charities can offer is excellent and necessary, but with a time limit attached it’s unlikely that someone like me will complete the task at hand. However, with ongoing support, the journey could continue with more ease and be managed better, making complete recovery and discharge a real possibility. The prospect of relapse would also reduce drastically, and this would remove the pressure of reengaging me at a later date because my mental health is, once again, a risk.
I’m not the only person in this position. It’s not how the system should work, and in the end it’ll cost them more time, resources and money, and people like me will lose more of our mental health.
Doesn’t seem right, does it?
Thanks for reading, and remember to appreciate the mundane stuff!
Creative Steph 