I’Ve just spent a week in beautiful Nakuru working with the Storymoja Festival. It was an intense week of activity. And I was part of it as a communications liaison. This is not something I would have thought even remotely possible in my current condition.
When I had my first serious flare in 2009 I had to quit working completely for a few months. Being housebound, bed bound, with a failing body but still mentally alert was incredibly difficult. I am naturally a social being, one who loves being active physically and intellectually.
So when my former employers offered me part of my previous job back – with the opportunity to work on remote – I was beyond pleased. The deal also meant I had access to computers and an Internet connection.
I worked from my bed – a few times from a hospital bed during those first few months. My work load and job descriptions have changed and evolved several times since then. But the most important thing to note is that I have been fortunate enough to find an employer who is willing to adjust to my circumstances while still expecting the very best from me.
As I mentioned earlier, I’ve just spent a week working with the Storymoja Festival. Yes, special arrangements for transport and housing had to be made taking into account that I am more likely to get exhausted easily, get infections easily and quite likely need time outs in-session. But those allowances made it possible for me to engage the very best of my intellect to my job.
So as I close my month of Lupus Living highlights I think it is important to say: Lupus Fighters and other people living with chronic illness can still be valuable members of society, valuable workers. Adjustments on normal working hours and expectations might have to be made. The Lupus fighter has to be willing to see their worth beyond the illness and offer that up. Employers have to be willing to see the value of the person beyond their illness. It is not always an easy match to make but it is entirely possible.