Too Disabled To Employ, Not Disabled Enough To Help
Last updated: February 2022
Getting diagnosed with AS really took a massive hit on my career. Before my spine started to act up, I was enjoying life working as a teacher in China. Then AS came knocking and I had to return home to the UK. I simultaneously lost my job and the ability to walk for 9 months. As I was in no fit state to work, I reluctantly applied for unemployment benefits while I worked on my recovery.
London is a notoriously expensive place to live. Even in the shady part of town where I live, the £250 a month I received would probably not even be enough for Bear Grills to survive.
After being advised to apply for disability allowance (or PIP as it's called here), I swallowed my pride and did so.
My first attempt
A few months later I hobbled down to the assessment centre on my crutches for what was to be the briefest appointment of my life. I wasn't asked a single question about my condition and merely told that as I had lived abroad for the past two years I wasn't eligible, despite being a British citizen.
I had made a very painful journey only to hear news that a simple phone call or email could have told me. It was extremely frustrating, but all I could do was take it on the chin. I put all my energy into fixing my body so I could get back to work and afford to live on more than survival rations.
I did eventually get my condition under control and got myself walking again. Unfortunately, my recovery coincided with the start of the COVID pandemic in China. This put a stop to my plan of returning to my adopted home to work again. I began looking at things locally while things there calmed down.
This didn't end well as before I could get anything sorted, the virus had reached British shores. As one of the 4 million people in this country deemed "clinically vulnerable," I had to shield. Essentially, I was under house arrest. I had to lock myself away from society for what was initially advertised as 12 weeks but ended up being a year and a half.
I convinced myself at the time that being inside and alone for this long was normal, but it was definitely the toughest period of my life. The first human contact I received was a nurse injecting me with my first vaccine dose which was well over a year after going into hiding.
Looking for work
During this time, I tried to find any kind of work that I could do from home. I didn't mind if I was over qualified or the salary was significantly lower. Not only was I desperate for some more funds to go towards my ever increasing bills, but I was desperate for a distraction. I really needed to take my mind away from the terrifying and lonely situation that I was in and to give myself a reason to wake up every morning. Due to the economic implications of the pandemic, not many places were hiring and my situation made it problematic for the ones that were.
Being unable to leave my house or be around people limited my options even more.
I received one job offer to work from home but the catch was that I would need to relocate to Reading, a town 100km away from where I live. Not only did this make no sense at all, but it would have been completely impossible in the peak of a pandemic. It was not to be.
I then began a conversation with a school about getting back into teaching. I was very excited about this prospect. It would have involved teaching from home on Zoom until things cleared up and schools were reopened by the government. However, when they found out about my condition, the offer was pulled from the table.
They figured that with my history of prolonged flare ups, I may need extended time off in the future which they weren't too hot on. I explained that both of these 9 month flare ups occurred while both of my conditions (rheumatoid arthritis and ankylosing spondylitis) introduced themselves to my body and I was waiting to be diagnosed and medicated. So unless another condition was to come and join the party in my immune system, another flare up of this magnitude was unlikely. They weren't buying it.
They also assumed that I might not be strong enough to perform well at my job. I'm not quite sure what physical strength would have been required for teaching young children but even flexing my reasonably impressive biceps on the Zoom call could not change their minds.
It was crushing. I felt so useless and lost. I have a degree, a teaching qualification and can speak 3 languages, yet I couldn’t find a job because my condition had seemingly cancelled all of these things out.
The only blessing was that this painful ordeal had lasted so long that I’d been back in the UK for the 2 years required to be eligible to apply for Disability Allowance. So after running out of options, this is what I did. I will tell all about that particular adventure in another article.
Do you notice worsening flares in colder weather?