Meet Amy

I’m Amy: Change 100 intern, pianist, scientist, volunteer, baker, crafter, (enthusiastic) DIY-er, reader, thinker, daughter, sister, friend and now blogger!

Change 100 intern — what’s that all about? In short, it’s Leonard Cheshire’s, award-winning internship programme, which offers paid internships to talented graduates with disabilities or long-term health conditions.

For an even shorter soundbite, Change 100 is life-changing. There’s no other way to describe it.

So what’s my involvement with Change 100?

A sudden change in circumstance: neuroscientist to neurological disorder

In September 2015, I started a PhD in Neuroimmunology at The University of Manchester. The project was investigating how the nervous and immune systems communicate with each other in the contexts of stroke and infection. It really was my dream project and I was so excited!

Unfortunately, in April 2016, I suddenly developed a plethora of unexplained symptoms — ranging from muscle spasms and excruciating pain to overwhelming fatigue and a gait pattern which made me look like I was intoxicated or like I’d had a stroke.

I struggled to co-ordinate my limbs, manage the pain and was so exhausted I was sleeping for up to 20 hours a day. For six months I struggled to read a few sentences, let alone comprehend as much as newspaper article.

As a former junior international triple-jumper and dedicated student, it was a massive change.

Making moves and moving forward

Undiagnosed for eight months, I eventually received a diagnosis of Functional Neurological Disorder (FND). The University of Manchester and my PhD supervisors were absolutely fantastic, and we stayed optimistic that I would soon make a full recovery.

After multiple interruptions of study and attempts to phase back into work, however, we came to the mutual agreement that the physical and time-sensitive demands of the Biological research laboratory were just too great for my health and physical capabilities at the time.

In April 2018, two years after I first became unwell, I submitted my preliminary PhD work for an MPhil and was proud to graduate in July of the same year.

Baby steps

Slightly before my thesis submission, in September 2017, I’d started to do a small number of hours as a private GCSE tutor: it was the first time I’d been well enough to work since I first developed FND, and I needed a purpose and some income!

I had gradually increased my hours and commitments, starting from two hours a week, working up to 12 hours a week nine months later. It was slow. It was frustrating, but it gave me a reason to keep going, a focus.

Tutoring lit a faint flicker of hope that I could build myself back up and one day be employed in a permanent position.

I love tutoring and continue to work with my lovely students, but I was also desperate for some advice about how I could become employed in a way which would enable me to work with other people, develop new interests, skills and ideas and have some level of career progression.

Standing at the edge of the precipice

Making that transition felt impossible. I like to think I’m an optimistic, ‘can do’ sort of person, but I really had no idea what to do, to whom to turn.

It may seem simple. Surely you just keep increasing your hours? Surely you just keep plodding on, bit by bit? In reality, with a condition that waxes and wanes without lunar predictability, straightforward isn’t the word on anyone’s lips.

Next steps

After my diagnosis, my health continued to, and continues to gradually and significantly improve: I’m much better than I was at identifying triggers which may cause my condition to ‘flare’, and the frequency and intensity of the ‘flares’ is lessening with time.

I am much better at managing my condition, pacing myself and generally asking for help when I need it (well, most of the time!).

I still end up in pain. I still end up absolutely exhausted after what would seem like nothing to some people. I still fight on, but sometimes I just need a little flexibility to help me to keep going, so that I can take a break before I crash, so that I can be the employee I’m capable of being and do the job that I’m capable of doing.

Try explaining that to a potential employer and then asking them to employ you!

Questions, questions and more questions!

What sort of a job can you even look at? At what point do you disclose? What sort of reasonable adjustments are, indeed, ‘reasonable’. When do you ask? How do you write down your work history? How do you explain the sick leave that you’ve taken?

I knew that I was enthusiastic, dedicated and driven. I knew that I would always give of my best, and I desperately wanted to be able to contribute to an organisation, and, let’s face it, live a physically and financially independent life.

But I knew that I couldn’t show that unless I wasn’t written off at the get go, and I was invited to interview. How on earth could I persuade anyone to do that?

Change 100

Change 100 came at the perfect time for me and provided an opportunity I could only have ever dreamed of.

Change 100 is about breaking down the stigma, gives freedom for complete disclosure, helps you to work out what reasonable adjustments will really enable you to do the best job that you can and to show who you really are.

It gives you the chance to talk to other graduates and University students, to share experiences, tips, advice, and to take strength from knowing that it’s not just you, alone — you’re part of something much bigger.

Change 100 provides that barrier between the impossible and the possible. It builds the bridge across the precipice, paves a path into the world beyond. That place you’d been looking wistfully at for so long.

My Change 100 experience

Every day during the first week of my internship (and for many weeks thereafter!), my eyes were filled with tears of joy, happiness and utter disbelief.

I hadn’t realised that I’d begun to doubt whether I could ever make a meaningful contribution to society.

I hadn’t realised that I’d started to believe that my condition made me too much of a burden to be of any value and I hadn’t imagined that there were reasonable adjustments which would enable me, with a fluctuating and, at times, greatly debilitating condition, to be employable and an asset.

As per my earlier soundbite: Change 100 is life-changing.