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.
Wrong.
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.
No job.
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.
But.
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.
Hi there…I look after children in my own home which has been ok while coping with RA…on my bad days they get more stories 🙂 I have had RA for 2 years and have been doing CHILDCARE for 20, good luck with getting something!
Way to make the best of things, Patricia. I’m sure the children don’t even mind your bad days…they would love the stories. Good for you!
OMG- you missed the prime opportunity- you should have bumped of the employment lady and taken her job- How hard can it be to sit on an ergonomic chiar, look down your nose, tut with smugness, practice your sarcasim on everyone you see, really not give a flying F#@” and stamp a file!! perfect for the RA sufferer.
On the serious side i can no longer Nurse- after 20 years as a nurse educator in trauma and Cardiothoracic- I cant lift me left arm-let alone a patient!
I am going back to uni via distance ed- but not sure I will ever be able to work. i do not qualify for disabillity-when I rang centrelink they told me A is not on there list of disability and then asked did I still have all my LIMBS!!
I have an internet business, but it does take money to start and run- dont fall for those no money down- no work make a million.I just do not have the energy at the moment to work the business.
Try listing with Elance-its free to list and you may pick up some free lance copyright,blog design etc.I think there are several sites that link people with computer skills to people wanting databases, websites etc, Make sure you use a site that has Escrow. Hope that helps xxxxx
Thanks Sarah. Good advice. I’ve looked at Elance…and a few others. I’d like to start a product driven site and am researching products at the moment. Its hard to find one that will work online. And I’ll need startup money…not sure where that will come from. But LOVED your comments about my employment lady…I sooooo should have done that…I reckon I could do her job standing on my head! Study is something else I’ve considered…but on the worst days I couldn’t concentrate…I’d be afraid of failing. So good for you! I really admire that. We’re not going to just lie on the couch and stagnate! And good luck with your business…hope its a huge success!
Hi it’s so hard feeling ‘out of the loop’. I had a perfect little part time job, I had a job share at my local infants school, the one my 3 kids went to and I did that job for 13 years. I loved every minute, I loved the kids and the team I was a part of. It got harder, I started using a cane, ok that was fine I just adapted and work didn’t mind, they accommodated me, the girls I worked with wouldn’t let me lift the chairs out or heavy lunchtime equipment, they accommodated me. I wouldn’t take my heavy duty painkillers because I wanted a clear mind and to be on the ball with the kids, but it got harder. It got to the point I couldn’t walk to work or home so I took taxis and that took pretty much all my wages but I kept going because I wanted to be there, I wanted to work and have that social aspect working in a team has. I didn’t want to let go, so when it got too hard to stand for lunchtimes they put me in the office as a temp fix while I decided my next move, they accommodated me again. One night I lay in bed & cried my eyes out as I decided that the time had come to let go, that my family was more important than hanging onto that little something for me, which was slowly being taken from me anyway. I typed out my letter of resignation the next day along with a personal letter to my bosses, thanking them for all they had done to keep me there. I handed it in, I cried again and when I left work that day I stood outside and cried my eyes out again. That was 3.5 yrs ago now and I still miss it. They still invite me for Xmas lunch and to other do’s that they have & that is precious to me, but I still miss being a part of that team & I miss that little bit of life that was just mine.
I hope you get that business started, we deserve to hang on to something. Good luck x
I’m so sorry Gillian…I can understand what a loss that job really is for you. Its a testament to what a great person you are that they still include you, and want you at social functions. And worked so hard to keep you there. I’m sure they miss you just as much as you miss them. You are so strong to have hung in there for so long…and I believe you still are very much part of that team. xx
I am sorry that you had to experience all this. Unfortunately it does many times work like that. Now put yourself in my shoes…I use to be one of those employment ladies for over 25 years, now the shoe is on the other foot. If you are seeing folks that are newbies this is the crap that they will give you. Make them work for you! Granted, I am not located where you are, but you have to find that one person that will work with you. You are never, I repeat NEVER going to fit into a job that is currently out there! It is going to have to be one that is designed for or by you! That means YOU are gonna really have to work for it. Create a position for yourself with your employment person. More like a freelance person…it does happen, you CAN make it happen! Design a portfolio of what you can do for a business. Don’t dwell on the aspects that you can’t do such as you are not going to be able to keep a 9-5 every day or a 12-4 or anything like it….let’s face it we know how RA works. They don’t need to know that you can only work on a project for 15 min. at a time focus more on completion of a project within a week. Look at everything from an employers perspective, stop going into offices that require employees there punching a clock. Those CLOCK PUNCHING JOBS ARE TOTALLY OUT for us! You have to really think outside the box. Does that get you back out with people, to a degree no, not like we once were. If you can do webdesign, you will meet with folks more one on one. Check into internet stuff that needs updating, like churches and I don’t know if what they are called there, here they are ARC’s (Association for Retarded Citizen’s), Head Starts, anywhere that needs to keep their sites updated, but they are lax on it. There is no start up fees for that. If you need to have actual money to start up a business, check into it on your own….chances are your employment person may not know. Here there are funds that you can get to start up your own business, I don’t know how it is there. Talk with your Employment Counselor to see if they can point to where you need to go. Look at yourself, do you have a hobby that you really enjoy that you could make money? Granted you may not make enough money to support yourself, but you would be doing something to feel better.
You exactly right Claudia – on all of the above. I think though I have done a lot of these things on my own…I was hoping for a little help from this lady! But I do need to try and work with her, and make her work for me. A clock punching type job won’t work…but there are other jobs that will. I think these types of services are there to provide a foot in the door, and introduction, a contact…and vouch for you to get you started. I will keep looking, but I’m thinking freelancing to get some money together to build a product sales website. In full research mode 🙂 Thanks much for your advice. It really has helped me refocus!!!
Really? She thinks you’re too I’ll to work, but well enough to start your own business? In addition to her many other flaws, she clearly has no comprehension of how challenging it is to start a business.
Yeah…quite a stunning attitude, right? I’ve run a web design business before, and you’re so right…much easier to work at a job for a steady pay check. The ups and downs of freelancing don’t really suit!!!