another with lupus.
The best advice I can think of is to know what you're talking about. All of those links in my earlier post Newly Diagnosed would help here. And get a good basic handbook about lupus.
You also need to have your doctor on-side. Your GP (not your specialist who doesn't have the time) is your best resource in terms of dealing with Centrelink, employers, etc.
And then, speak up, and keep speaking up until you get what you need.
Why do we need to speak up? Well, here's a little story.....
When I still officially had a full-time job, I had been on sick leave for almost a year. The time came to make a decision, was I going back to work part-time, going to go back to work full-time, going to have to stop work all together?
My employer did the "right thing" and got a workplace rehabilitation worker involved.
I checked with my GP who told me to start out at no more than two hours per week work. Armed with this information, I spoke to the rehabilitation worker, who claimed to understand all my limitations, then went away and did me a plan to work two hours per day.
I objected. I told both the rehab worker and my employer that this was not something I could do straight up. The rehab worker said this was just to get a "baseline" to work out what I could and could not do. My employer accepted the expert opinion and said to try it. This is the point at which I ought to have said "NO!"
Instead, I dutifully tried to do as I was told.
The ensuing flare was bad enough that, in my early 40s, I was retired. I've had a bit of part-time ministry work since then, but there's not much chance I'll ever go back to working full-time.
After the fall-out, the workplace rehabilitation worker's supervisor saw me to apologise. If someone had appealed to the supervisor when the ridiculous return-to-work program had first been written, the whole thing would have been stopped as being beyond the point of ridiculous, but I hadn't stood up for myself enough for it to go to the supervisor. (If I'd taken the program to my GP, she would have called a halt to it as well, I found out at my next appointment with her.)
So,in summary, there's three steps to advocacy:
- Know what you're talking about.
- Involve your doctor.
- Speak up for yourself, and don't settle for what you know isn't good enough.
This post written as part of Wego Health's Health Activist Writers Month Challenge.