From Unemployed to Vital Support

When I first became unwell with ME at the age of 14, I never thought I would be able to manage any type of job. For years, my focus was simply getting through the day. But, a few years ago when my health hit a more stable period, I was determined that I wanted to work.

The issue of gaining employment with a disability is still a major one, with many employers not willing to make adaptations or simply hire someone with a disability. I went through countless applications and interviews, even to the point where in one interview I was asked if I would 'really need to bring my assistance dog' into work and they happily voiced the awkwardness of having to change (their interior) if they were to hire me. The frustrating thing is, with the Covid-19 outbreak, many employees have now been given the opportunity to work from home which is one adaptation people with chronic illnesses ask for, proving that it can easily be done. It's just employers simply aren't giving those with chronic illnesses/disabilities the opportunity.

In Summer 2019 I started working for the ME Association as one of their social media managers. I work remotely from home and it's a flexible contract so I can adjust my hours. I worked for 5 hours a week, splitting it up over a number of days so I wouldn't get too tired. Of course, working for an organisation who understands your own condition is very useful, so if I'm poorly everyone is very understanding. For many months, things ticked over and we worked on various projects... Until Covid-19 hit.

Outside of work, I do a lot of campaigning, especially in the disability sector. The last day before 'lockdown' I was speaking at a open conversation night at my local pub and I really enjoy my advocacy work. Because I have a number of other complex conditions, I'm on the 12 week 'shielding' list so stopped going out, even for 'essentials', long before the restrictions tightened. I, like many others, have had to completely change the way I campaign, work and manage at home. And it hasn't been easy.

The first hurdle was my parents had to make the decision to stop going to work, before the restrictions came into place. We had to split up the household and cancel my daily carers as the risk was simply too high. This means that my parents have to do their jobs at home, then also do a care role which usually would take 2 carers. They are also supporting my sister with her online college work and home schooling my nephew. So really, between 2 of them, they are doing 6 jobs. 

The next hurdle was my work. We had an unbelievable increase in demand in service for the ME Association as soon as the Covid-19 outbreak started. I decided to take on more hours to help out and we all as a team are working incredibly hard to try help everyone who comes to us. Within this role, we get a number of issues arise, like say people with ME being unable to get online shopping slots. My usual campaigning route is very, well, vocal. I like doing things in person because I get a better result. But, campaigning for change for things like this is emotional and frustrating. I've spent hours on the phone to Sainsbury's head department, I've wrote to MP's, we've collated letters to parliament, we've produced guides but I still don't feel like I'm doing enough because we don't have an answer. It's heartbreaking sending replies when we can't help much and it definitely has been a very emotional few weeks.

I know there are so many more in situations like this who are feeling overwhelmed by the current pandemic. It's hard to see people complaining about being isolated for 3 weeks when many people with chronic health conditions live in isolation for years. It's hard people complaining about working at home when really people with chronic illnesses would absolutely love the opportunity to be given remote, flexible working. And it's hard to see that yet again, we just seem to be bottom of the pile. 

I still can't quite get my head around how 9 months ago I was virtually unemployed (I still taught 1 short dance lesson) but now I'm providing vital support to vulnerable people. Whilst being an 'extremely vulnerable' person. I wish more organisations and the government would see this and see we are worthy. We are making a contribution to society and will continue to fight for change.

I promise I won't stop campaigning and please know that I'm working hard behind the scenes, please look after yourself and stay safe.

Photo: Katie Meehan

Kate x




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