Juggling work, kids and sight loss

Francesca Scott started to lose her sight at aged 39, with two young children, a full-time job and living in a remote area... how did she cope?

We talk a lot about empowering people with sight loss to carry on after their diagnosis, to learn to adapt their lives and continue to aim for their ambitions. But it’s hard. And people face many challenges unique to their own situation.

We spoke to Francesca who started to lose her sight at 39. She had two young children, moved hundreds of miles, faced discrimination in applying for jobs and also divorced from her partner. But she came through it all and wants to share her story and advice for others with visual impairment.

“I was diagnosed with Stargardt Macular Dystrophy just over 10 years ago aged about 39. For Stargardt, this is relatively unusual as it’s childhood dystrophy, but I always was a bit of a late developer. At the time I was a full time working Mum, with two children, aged 3 and 7 and we lived in the Highlands of Scotland, which is not blessed with great public transport – the nearest railway station was 14 miles away and the buses were a bit infrequent.

My family were nearly 400 miles away, down in England and my husband had been made redundant a few years earlier and still hadn’t found a new job. It felt like a bit of a disaster at the time and I remember being in a complete panic about how I would manage all the various responsibilities I had. We decided to move to Cumbria, which was closer to my family (around 100 miles), had slightly better job prospects for my husband, and a bit more public transport.

Francesca Scott with her two children

I gave up my job as HR Manager at the National Park, hoping that I’d pick up a job in Kendal, and had an interesting year of experimenting with how to apply for a job as someone with a developing sight problem.  At the time I was still driving and my condition wasn’t really impinging much.  I started out being very up-front about the condition and got no job offers, moved to not telling anyone, and got a job, but was “made redundant” as soon as I did tell them.

After a bit of trial and error, I hit on the right balance of being well prepared so that I could turn up to interviews armed with the ability to talk confidently about what strengths I brought, what support I needed, and where I would get that from – above all giving the impression that I was confident, that I would be an asset and not a burden. As someone who is not naturally very confident, this took a bit of a shift in approach for me, but makes a lot of sense, in that you have to believe that you are the best person for the job before the employer will believe it. I haven’t really looked back since.

...you have to believe that you are the best person for the job before the employer will believe it. I haven’t really looked back since."

Francesca with her daughter

My current employer is incredibly supportive and whilst I’ve been there I’ve had to give up driving, and now need adaptive software on my computer.  My work is about 25 miles away, not on a bus route and 6 miles from the nearest railway station.  I currently use a lift-share which I found through the internet (Liftshare UK), but that took a while to find and I went through a few options before I hit on it. Access to work insisted that they would only support me getting there on public transport, which would have involved two taxi rides and a train journey (with very infrequent trains) – starting at 7am and getting home around 7pm. By this stage, I had become a single parent and main carer to our two children, one of whom was still at primary school, so a 12 hour day wasn’t a practical solution. I asked to work from home some days and spent a while getting a lift with a colleague. The lift share arrangement is great though, as it’s with people who are actively keen to share the cost of travel, so I don’t feel I’m having to beg favours.

Being visually impaired means that sometimes I do need help and this was hard for someone who is fiercely independent. But one thing I’ve learnt from our fundraising team at work is to ask for help in a way that makes people feel good about helping.  It’s always tempting to be a bit apologetic or feel awkward about asking, but people often like to help, and like to feel good about it – so I always try to make sure people know how much I appreciate it. Asking for help is a fact of life, and whilst I like to be independent as much as possible, and feel that I am very independent, it’s been important for me to learn to ask for help when I need it. It’s also made me much more aware of offering help to other people whenever I can – so it works both ways.”

If you feel you or someone you know is struggling with sight loss and need some support to get you heading in the right direction, then please call our First Step Team on 03oo 222 5555 or email info@henshaws.org.uk

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Sarah is the Marketing Manager with responsibility for Community Services across Greater Manchester, and the Knowledge Village.