This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Your rights when you are ill

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Given my recent visit to hospital I thought I would share what I have found out in the past few years about laws, social and cultural practices and personal rights for the individual during times of health concerns.

I am not going to specify the exact laws, because in Australia they vary between states, and change at irregular times. Also it helps no one if I tell you a specific law or act in Australia and you are in New Zealand or Canada (if you need me to point out that laws change between countries then I want you to find the nearest person and hug them.)

There are not only laws, but also every work place will have workers rights and practices that you agree on when you enter an employment role. These are found in your contract. If you are in any level of education; primary, secondary or tertiary, the institution you are involved in will have practices to ensure you are able to continue your study. As my lecturers say, they are there to help you pass not ensure you fail.

From the instances of the first diagnosis you are even entitled to make some requests and demands of your doctor, I will talk about those too so you can start on the right foot and catch up where you need to.

I also will admit freely that I am not that well versed in the entire law of anywhere and so to start listing specifics is just going to start trouble. What I will do instead is point out what should exist and what you should be thinking about, and then direct you in the way of making headway in your own time.


When you first sit in the chair and hear the news many things happen to you. You barely have the sense of mind to ask the questions which will be pertinent to you. I don’t say this assuming you are a bit daft. I say this because there is no possible way you can synthesise a drastic change in your life and future and be able to fully comprehend the information instantly. It takes time, reflection and research to consider and understand.

I’m guessing we have already missed that initial meeting. I am also guessing that they will never tell you whether you have chronic illness. Really it is difficult to diagnose a chronic illness at any time. This is likely because ‘chronic’ requires proof that it is ongoing and this never happens at first.
You have the right to know what is going on and have ANY question answered.
It is common for a patient to return to a doctor or look for help answering the questions you don’t think of initially. Personally I would suggest the diagnosing doctor would be the best authority to answer these because they are familiar with your particular case. As every illness will manifest in its own way for each person it is important the person answering your questions knows you.
My questions range from practical, ‘What medicine and activities should I avoid?’ to the insane ‘Can I drink alcohol in a sauna with chain smokers on an ice covered mountain top?’ Or ‘Is parachuting with blood thinners OK?’

My mum always hates when this list comes out.

You have the right to insist on help.

For physical issues that my parents and I perceive as ongoing we will organize a visit to our local Independent Living Center. This is a hospital-assisted organization that operates through physiotherapists and occupational therapists. There are living assistance devices and aids for every task you need to use. They guide you through rooms and help you find ways to overcome physical difficulties.
You have a right to professional guidance.
For understanding and coping with potentially difficult diagnoses it is wise to seek counselling. I don’t care how strong you are. It doesn’t matter if the news came two days or twelve months ago. Any change to your body and life will affect you. It is inevitable.
As you take responsibility for your physical health, you should also take responsibility of your mental health. Ask for a referral to a counsellor or psychologist. Even if you only go twice the impact of discussing ideas, thoughts, plans and coping mechanisms could be invaluable. I have been eight times so far since I the age of fifteen. I am now 26.5 years old. When I learned I had Rheumatoid Arthritis, Systemic Lupus Erythematosus and Bell’s Palsy I did not seek help for over a year. It wasn’t until I eventually received that help that I was able to realize I had not really explained to my brothers what was happening with my health, how it was making me feel and what struggles I was facing daily. That counsellor taught me how to change my way of thinking and articulate my pain and needs so the people in my life could better understand me. Priceless.
You have the right to a Mental Health Plan.
I do not know how many countries have legislation in place for a program like this. Knowing how similar the Australian Medicare and public health systems are to places like Canada and France I can at least assume we aren’t the only country that has this type of program. A Mental Health Plan is assistance through the medical system of a government that allows for the subsidization, prescription and referral of an individual, who has been diagnosed as suffering from, or with, mental health concerns and overall well-being. A carer is as entitled to this as a sufferer. The program allows for ten subsidized psychologist/counsellor appointments as well as medication for mental health concerns. There is a certification that can be shown to education institutions, as well as employment personnel. There is an assessment period to determine the severity of the mental health concern and long and short term approaches.
You have the right to sick days.
We all know you are a trouper. We all know how much of a fighter you are. You have to be just to sustain your sanity given how much of a burden you carry.
But you know what?
Every so often if you spend the day in bed in your sleepwear with a book, or stay in slouch pants under a blanket on the sofa while you cry and watch Dr Phil, WE WON’T JUDGE YOU. It is in the best interests of your body and your mental well-being if you do choose once every six months to not get out of bed. Give in to the sore back or migraine or numb feet. Don’t try and wade through the rain. Spoil yourself. Its what sick days are for. No one will give you a reward for punishing yourself by not doing it.
You have the right to disability benefits.
Don’t we all wish we didn’t have to admit to being anything less than fully able? Its not just a concern of the young. The word comes from ‘dis’, a prefix meaning opposite (to the word it is paired with) and ‘able’ so disablity is the lack of ability. So why is it so easy to say you can’t carry heavy objects but so hard to say you have a disability? There us a lot of government assistance for various levels of disability. Subsidies for eyes (glasses =disability), ACROD permits (parking in wider, closer designated areas), Health Care Cards (spending an excessive sum annually on medicine and medical support=disability) are all put in place to ensure you succeed, not setting you up for failure.
You have the right to work at your reasonable capacity.
Unions have employment disability schemes, but some occupations don’t necessary lend themselves to unions. Talk to the Human Resources (HR) in your company. Don’t have a HR? Talk to your supervisor and ask to see Occupational Health and Safety (OHS) documents. Look online. Find an ombudsman. Find out the standard health, illness employment laws and acts in your state and country.
Having said all this, your most important role at work is to be proactive and take responsibility for your health. From the instant you start to feel sick or as you interview for a new position You must open a positive and honest communicative rapport with your supervisors/managers/superiors.
Show documentation. Clarify terms and discuss what is going on, implications for your work functionality, how you aim to manage things, emergency protocols and contact information, how they may be able to help. Be realistic. If you do this you are likely to be met with help and support.
You have the right to study at your reasonable capacity.
As soon as you enrol, or begin to feel unwell, the administration and relevant education staff should be notified. At universities there will be a disabilities office or coordinator. It is there job to know what is happening and plan for assistance. Even if your only issue is chronic migraines, see them. When I started at university I approached the student advisor and the first year advisors for my ‘school’ (I’m studying to be a teacher so my school is Education). From there I met the disability officer to find the Student Body services (food stamps, second hand books, practical uni promoting backpacks etc). From there I was assigned my Equity officer who developed an EQAL plan.this document is in the university database and is the official confirmation of my illness. It outlines what potential assessment alterations I may need in the future, as well as vague specifics regarding my illness. They know how I’m sick and how it affects me. Every semester I update it. I can access it to email at will in my uni account. Tutors CAN NOT see it, and I need to make them aware at the start of each semester that I have one, in case they need more confirmation. It will tell them how I would prefer my alternate assessment to occur (orally, time extensions, special equipment, translator etc). I haven’t used it yet but with an EQAL plan I receive more leniency.
So. You see what I’m getting at.
There is no shame in asking for help.
Shame on you, in fact, if you don’t. This is your life, your body, your illness.
Take control of it.
Know your rights.


For more information within Australia on some of these  supporting documents follow the links below:

Department of Health Mental Health Plan Sample

Independent Living Centre

Safe Work Australia (Some of these are not related, but some is relevant)

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

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