The irony of having to say ‘No’ to the thing you need most
Written by Arthritic Chick on July 26, 2014
I had one of those ironic moments today. When something you really want lands in your lap…and you have to say ‘No thanks.’
I was offered a part time job. From home. As a social media manager and content writer for a small business. It’s not highly paid, but it’s exactly the kind of work I would like to do. Its only six hours per week, so even on my worst week, I should be able to manage it. I have the skills, and I have vocal recognition software so that when I can’t type, I can dictate and edit later.
It’s the perfect opportunity for me to get back into the work force on a small scale. Even a small amount of money, when you live on a budget as tight as mine, is an exciting thing. But more than that, having a purpose, a job, a focus other than arthritis, is something I desperately need.
Much as I don’t want my life to revolve around my illness, it does. Everything in my life is controlled by my arthritis. What kind of day I am having is decided by what kind of day my arthritis is having.
A new focus and a new challenge is something I have been trying to find for quite some months. I haven’t been in regular, paid employment in more than two years. I have done some small freelance jobs, but nothing reliable. Because finding freelance work is difficult and sporadic, last year I decided it was time to apply to access my superannuation early, on the grounds of invalidity.
It’s something my rheumatologist and my GP had both suggested to me. I had resisted for years, because it’s such a big step to declare yourself permanently disabled in your early 40s. It’s a very hard thing to get your head around. Even though I know it’s true that I am not capable of earning an income that will support myself and my two children, I preferred to stay in denial. I told myself until I had exhausted all my treatment options there was still the possibility that I would get my life back. I would get my old career back. I would claw it back!
Then my rheumatologist asked me how I was paying my bills. Disability support. And she looked me in the eye and told me that at this stage of my treatment, the chances of achieving a meaningful remission were miniscule. That she was aiming for low disease activity, not remission. That full time work, for me, is out of the question. It is not a reasonable goal. That there will always be pain. There will always be fatigue.
It was a defining moment. The next day I approached my super fund and started the paper work.
I am capable of working part time. I am medically approved to work 15 hours per week. But here’s the problem: Finding a job for 15 hours per week. Those jobs just don’t really exist much. And when they do come up, you’re competing with able bodied, healthy people for them. Which would you choose? The person with the serious illness or the one without?
So this six hours per week, actually doing work that I am interested in, seemed like a gift from the gods.
But here’s where it gets stupid.
Because I am applying for early access to my superannuation, my case manager has advised me that if I do ANY work at all, it will go against my case. Even six hours a week will be seen as a sign that I am able to work. I am not disabled. I will not be able to access my superannuation money.
Crazy! Six hours per week is not enough to support my family. Six hours per week does NOT mean that I am really capable of doing 40 hours, but I’m too lazy.
But those six hours would help immensely with my mental health. My sense of self-worth. Seeing myself as a productive person again, and working towards meaningful goals.
All those things go by the wayside when you aren’t working.
It makes no sense to tell me I am not allowed to work at all. But the powers that be can use even a few hours of work against me. Use it as evidence that I am not, in fact, disabled enough.
So I can’t take the job. I have to politely decline. Obviously this employer will not consider me again.
Accessing superannuation early, is a very difficult process. It’s a slow process. It feels adversarial. It starts with the assumption that there is nothing actually wrong with me, and I need to prove my illness. They have all my medical reports and previous records. Access to scans, bloodwork, everything. Tomorrow I will be assessed by two of their doctors. Two complete strangers, who potentially have limited knowledge of rheumatoid arthritis will spend maybe two hours with me in total, and decide whether I am disabled. Neither is a rheumatologist, nor even a pain management specialist.
I will be assessed by an occupational medicine doctor, whatever that is. And a psychiatrist. I hope they have more than a passing knowledge of prednisone, and its ‘wonder drug’ qualities. Because I’m on 20mg right now, and looking strong during daylight hours at least.
They probably know very little, however. They, like so many others, will look at me and see me as fit and healthy. And they will write up their reports and make decisions that have a huge impact on my life, having known me for less than an hour.
And to add insult to injury, I have a rare opportunity on the table that I would love to pursue. But I can’t. I can only tell myself there will be more opportunities in the future. Once this case is won.
The process is flawed. The process is not designed to help genuine people. The process is designed to catch out cheats.
But it’s the process that I have to follow.