Opinion | 3 December 2014

Work and the invisible disabling disease

I do not look disabled. I do not look sick. I have what is termed an ‘invisible disease’.

Eight years ago I was diagnosed with Mixed Connective Tissue disease – a crossover syndrome of rheumatoid arthritis and lupus. I myself had no idea what this would mean. I only had a vague idea of what arthritis was, and lupus was something that Dr House was constantly eliminating as an option on the TV show, House.
When people hear ‘arthritis, they instantly think osteoarthritis, wear and tear arthritis – a disease that old people get. A disease that everyone gets eventually. It’s not serious, just some minor aches and pains.
Nothing could be further from the truth. Rheumatoid arthritis is an autoimmune disease. It is systemic, which means that it can affect much more than just the joints. While most cases are mild and easily treated, about 30% of people do not respond to any current medications.

Moderate to severe rheumatoid arthritis can affect the eyes, kidneys, liver, lungs and heart. It is treated with serious medications that can be as dangerous as the disease itself, low dose chemotherapy, biological drugs, corticosteroids and narcotic pain relievers.
It is most often completely invisible, with no outward signs. People who do not respond to medication live a life of ever increasing pain and disability. To add insult to injury, there is so little awareness of the disease that most people think it’s nothing serious and can be fixed with a Nurofen.

An invisible disease at work

People certainly do not understand why I can’t hold down a job, so let me explain.
Firstly I am in constant pain. This affects my concentration, although work would be a welcome distraction!

To combat the pain I take slow release morphine and oxycodone daily. This allows me to function, but it affects my concentration and alertness. Driving a car on these medications is a legal grey area and it is most certainly a health and safety issue in the workplace. What employer wants to take on that risk?
Secondly there is fatigue. Medical fatigue is not just being tired it’s like dragging lead weights around behind you or walking through swampland. The fatigue demands I take regular rest breaks and most employers are not keen on you taking a nap at your desk.
On a bad day my hands are balled up fists. I can’t wash my hair nor style it. I can’t wear clothes with fiddly buttons or zippers so I wear sweats and yoga pants. This is not generally accepted business attire. I am not well presented for the office.
I do have good days. On average I usually have two good days a week, three moderate days and four knock down days. But I can’t predict which days these will be so I can’t keep to a regular schedule. Most employers like to know when they can expect you to be at work. They like you to attend team meetings and they don’t like it when deadlines slip.

How I work

Having said all of this, I CAN work. I can work part time, remotely. As a web designer and copy writer I have the perfect skill set for telecommuting, I can manage a project and follow a brief.
For years, that’s exactly what I did. When that business closed, I lost my job and I have not been able to find a similar arrangement since.
It comes down to this, why hire me when there is a healthy person that can do the job?
I have read that the unemployment rate of people with a disability is 47%. Most of us can work in some capacity and most of us would prefer to work but there are few incentives for an employer to hire us.

And until this changes, I will continue to be unemployable and live with the stigma attached to an invisible disease.

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