WHAT IS THE SWEETEST GIFT?
I often get asked this very question. And the short answer is on our homepage – because transplant recipients and people with chronic illnesses struggle to stay stably employed due to the changing and sometimes unpredictable nature of their health. For me, growing up and entering the workforce with type 1 diabetes was easy at first. I mean, I was 18 and could easily burn the candle at both ends, but not long after I noticed my vision starting to fail me, my body did too – in many, many ways, and as things shifted from bad to worse, my ability to be employed and financially independent did too - for over ten years now, well into my life post-transplant.
If you’ve ever been sick, even if it’s “just” a cold, you may have needed to take a day or two off work to rest and recuperate (and I’m not referring to Australia’s penchant for the sickie) for many transplant recipients, this can be massively amplified due to being immunosuppressed (so that our bodies don’t attack our precious donated organs) and a simple cold or bout of gastro can wind up not just requiring a day or two off work, but sometimes weeks and a stint in hospital. Job? What job?
It’s far more important to look after our bodies – something that everyone should really do anyway – and get better. This is a hard lesson to learn, and for me no amount of disclosure or explaining and perceived understanding on an employers’ part would match the reality of what life as a transplant recipient or chronic illness sufferer could be like on occasion. The expectation of a phone call telling me that I had used up all of my sick and annual leave, and my employer actually needed a staff member that came to work became an all too common, yet incredibly defeating occurrence.
To go along with the seemingly endless cycle of interviews, work, hospital and back again comes the isolation of not working AND being unwell. There were (and still are) times when I can’t find a reason to leave the house. One day becomes two, two becomes five, and before you know it, it’s been a fortnight and the most strenuous thing that you do all day is change from one pair of pyjamas to another.
Neither of these scenarios are a way to live, and I’m not the only one who has experienced both of these situations. We spoke with many chronic illness sufferers and transplant recipients also lamented their lack of stable work and social isolation, but they also spoke of issues that were heartbreaking to hear – some didn’t feel comfortable and chose to hide their condition, hoping it would fly under the radar, some spoke of having to explain gaps in their employment history and feeling dismissed once they explained and one person even said that they had been bullied, teased and referred to as “soft” because they became unwell seemingly easily.
That comment broke my heart. Every recipient, every person I know who has seen more than their fair share of hospitals and doctors is far tougher than most people, and the thought of anyone being criticised in such a way steeled my resolve to change things.
And so, The Sweetest Gift was born – a place where a sense of normality could be created for people who had led somewhat less than “normal” lives.
How sweet is that?
