My rock bottom began when I was walking to sixth form one morning in 2020. Nothing huge or dramatic happened – at least not externally – I was just struck by the sudden urge to go to the toilet. I know this sounds like a tiny, inconsequential thing (perhaps I’d just forgotten to go before I left the house), but once the feeling came, it was like someone had turned on a tap and then removed the ability to turn it off. It was unforgiving: even going to the toilet didn’t give me any sense of relief.

I felt constantly like I was about to wet myself, which morphed into a fear of leaving the house and thus being more than a minute away from the toilet. I retreated into a cocoon of isolation, and my body forced me to take the decision to study from home.

I was unable to sit without writhing in my seat, and I couldn’t stand without feeling like I had to clench my legs together. I went through several months where I was unable to lie down to go to sleep because I was terrified that I’d wake up in a puddle of my own urine. Weeks went by and, though I’d occasionally find a position to sit that would mean I wasn’t bursting to go to the loo, I continued to experience this immense discomfort. All of my symptoms seemed to be aware that I was getting weaker and began testing how far they could push me before I admitted defeat. 

This wasn’t the first time my body had seemed to be working against me. From the age of eight, I seemed to attract diagnosis after diagnosis: first hypothyroidism, then generalised anxiety disorder and depression, followed by PCOS, social anxiety, panic disorder and OCD. I’ve long struggled with physical manifestations of these illnesses, from palpitations and brain fog to an unrelenting drone of nausea, which in turn led to emetophobia (a phobia of all things linked with vomiting). Since entering my life over a decade ago, my mental illness has swung between quietly poking at my insides and roaring through my body to ensure I was giving it enough attention. Symptoms became entangled quickly, and I was left confused about what was being caused by each illness.

The constant feeling that I needed to pee was the breaking point. Before that, my symptoms had prevented me from enjoying being out… now they stopped me from even leaving the house. They didn’t cease when I was in my home (my safe space), but they were just about bearable. 

Then lockdown arrived. I felt my whole body relax as I came to terms with the fact that I didn’t have to leave my front door, and no one could tell me otherwise. Selfishly, it helped me to know that I wasn’t missing out on what others were doing. My ‘bladder weakness’ – which is what my family and I had taken to calling this symptom that no medical professionals were able to explain – slowly became a part of my backlog of unresolved issues that I carried with me, and eventually, it became something that only cropped back up when I thought about going into the outside world. I could go weeks without even stepping foot into the garden, never mind going any further. I had previously been diagnosed with other conditions, but it was evident that this was something different.

After doing my own research and talking to my GP and a psychiatrist, I was eventually diagnosed with agoraphobia. Agoraphobia isn’t a condition that’s commonly talked about: it’s categorised by the NHS as a fear of being in situations where escape might be difficult or where help wouldn’t be available if things were to go wrong. People experiencing agoraphobia may avoid going to public places and, like me, struggle to leave the house. It’s one of many disorders that sits under the gigantic umbrella term of ‘anxiety’. We all experience a level of ‘normal’ anxiety, but disorders are persistent. 

Every time I’d tell my loved ones about a new illness, I felt their significance being diluted. It was like I was the girl who cried wolf. This meant that while the diagnosis of agoraphobia was initially very validating, I was left confused about what it meant. I’d never heard of agoraphobia before, and there was very limited information available about exactly what it meant and how others had managed to get through it. No sooner had one weight been lifted from my shoulders than another arrived to take its place, and I began questioning whether I was simply not trying hard enough to face my fears.

It’s easy to think that people with agoraphobia would rather just stay at home, but that’s not the case. I would love to go out and about, but being trapped in a safe environment became much less painful than enduring the toll of trying to venture out into the world. My OCD meant that additional medication wasn’t possible and NHS Adult Mental Health Services have ridiculously long waiting times for therapies, so recovery has been limited to relying on loved ones to coax me out whenever I feel able. The fact that my general health has never been great means every time my energy levels are depleted, I end up having to start back at the beginning.   

Agoraphobia, for me, is the torrent of fears about all of the things that could go wrong when I’m out of my safe zone. There are too many unknowns – too much that is out of my control. When I started trying to venture back out to do the simplest of things – a walk down my road or a drive around the block, all of the feelings that isolating myself had shielded me from came cascading back. 

My body has always been quick to react to stress, so when it recognised I was starting to try and leave the house again, it was quick to attack by increasing my nausea. This was coupled with something that only confirmed to my brain that I was making the right decision by not forcing myself out – the feeling once again that I was going to wet myself. When in the car, I would be so uncomfortable that my whole bladder system would be pulsating with pain. I tried wearing disposable underwear just in case, stopped drinking liquids on days that I was going to attempt to go out and repeated the phrase ‘mind over matter’ to see if I could trick myself into feeling less overwhelmed. It didn’t seem like it was going to get any easier. 

It took time to realise that if I tried separating out my symptoms, particularly the bladder weakness, nausea and emetophobia, I could see that the insurmountable monster stopping me from leaving the front door was in fact made up of several smaller beasts that were slightly less scary. This didn’t make them easier to battle, but it meant that I could attempt to take them on one at a time. Tackling my palpitations through breathing exercises and relaxation techniques certainly helped – to a degree, at least. I also learned to use emotion-focused therapy to try to better my emetophobia. Though these acts didn’t help with leaving the house, I was able to feel calmer in my home. I still haven’t found my winning strategy, but I’m slowly learning how to cope.

The mental process I have to go through to come to terms with everything that I have missed out on, and continue to miss out on, will never get easier; only a few months ago, I was ready to accept a reality in which I’d spend the rest of my life withering away inside my home. The things that everyone around me was doing – going shopping, going for a meal, going to the cinema – were all things that I could no longer consider doing because the stress was too much for me to handle.

Time doesn’t slow down for anyone – when an opportunity has passed, there’s no turning back. I still haven’t experienced the majority of things that I thought I would have by the time I was in my 20s, and it’s taken a lot of grieving and self-reflection to process this and make peace with my reality. I don’t feel that my progress is fast enough to keep up with the rest of the world, but I’m slowly but surely building up my own comfort zone – and finding the ability to be proud of how far I’ve moved. My norm doesn’t fit society’s definition, but I’m finally choosing to have hope for my future. 

Frame Of Mind is Stylist’s home for all things mental health and the mind. From expert advice on the small changes you can make to improve your wellbeing to first-person essays and features on topics ranging from autism to antidepressants, we’ll be exploring mental health in all its forms. You can check out the series home page to get started.

Images: courtesy of Amrit Bhabra