I think it’s time I addressed a few of the other impacts of rheumatoid arthritis. I’ve written a little bit of an overview here. I’ve written a little bit about why I can’t get a real job. All of that still stands. But I still am capable of working. I just have some specific needs. Part time hours, and those hours need to be flexible.
I know that’s a big ask, but it’s not impossible. I am skilled. I am trustworthy. And I have skills that are perfect for telecommuting. I am a web developer and designer and I also do SEO work and online marketing. Perfect. All I need is an internet connection and I can work from anywhere. In track pants with heat packs strapped to wherever they need to be strapped. I should be one of the lucky ones that can still work, in spite of severe, long standing disease.
I have applied for several part time roles and casual jobs. Questions arise, I always feel compelled to disclose my Rheumatoid Arthritis. Legally, I don’t have to, because an employer is not allowed to discriminate on that basis. However, what is the point in winning a job, only to be sacked down the line when RA rears its ugly head? Pointless.
So no luck.
There are disability employment services here in Australia. Their sole purpose is to help people with disabilities get into paid employment, rather than rely on a disability support pension.
I have been on their books for over a year. A few months ago they found me a volunteer placement with the local council. The plan was for me to work for a few weeks, for no pay, to demonstrate my skills, in the hope that they would then employ me on a permanent part time basic. (You know, for money!)
The employer was keen, and very positive that if I passed the eight weeks successfully that there would be a role for me. I had high hopes.
But you know what happened. Just what everyone told me would happen. I did my eight weeks, and then I was given a lovely bunch of flowers, and a morning tea and that was the end of that. I do however have a good reference. But that’s all.
The whole experience was exhausting, and beyond depressing. And tried my positive attitude to the core.
They were very good people, friendly and I did enjoy being back in the ‘real’ world.
It was physically hard going in to the office some days. It was hard being in a lot of pain, and knowing that no one there understood this simple fact. It was hard listening to people complain that their weekend was ‘boring’ when I had spent mine confined to the couch due to pain and fatigue. It was hard listening to people complain about a headache, and then knock off and go home. It was hard listening to people just talk about ‘real life’ in a way that has been entirely lost to me. I don’t live in that world anymore. I don’t belong there anymore.
It was nice to visit. But I was visiting. I was pretending. I am not like these people anymore. No matter how much I might wish it to be true.
Part of this is definitely my problem, and something I need to work on. But it did bring home to me, that no matter how much you might not want Rheumatoid Arthritis to be your identity, when your disease is severe, there is no way to avoid that. No way at all.
And ultimately, I left feeling disappointed, and used. I will not work for free anymore. Not for strangers. The only free work I will do will be to raise awareness for Rheumatoid Arthritis.
I had an appointment with my consultant this week. My old consultant has retired, and quite frankly she didn’t do much for me. So I was very keen to meet my new one. And see what she might be able to do for me.
She opened my file.
She asked “Why are you here?”
I said I wished to find paid employment, wasn’t that the point?
She told me that I didn’t need to. I was on disability so there is no requirement for me to job seek. I explained again that I would like to find some paid work. To improve my financial circumstances. To develop some self esteem. To make social connections and feel more ‘normal’.
She shrugged. “We don’t get many people here on a voluntary basis.”
Then she told me she felt I was unemployable and that I should start my own business. I explained I didn’t have the financial resources to do that…starting a business takes money.
She couldn’t care less. She stamped my file that I had attended my meeting and told me to come back in a fortnight. So that she can tick me off again as having attended. She considers that her job done.
There will be no help there. Unbelievable attitude.
So I guess I’ll have to start my own business. I won’t give up. I won’t settle. I won’t accept that sitting on my couch is all I am capable of.
I am more than my disease.