Guest Post by David Mapletoft, Diabetes Educator
Diabetes impacts all aspects of your life. Research has found a that diabetes impacts on the daily lives of individuals with diabetes and their family members.
From the DAWN (Diabetes Attitudes Wishes and Needs) these impacts were in the following areas:
- Decrease in physical strength – 62%
- Worried about hypoglycaemic events – 55%
- Emotional wellbeing – 46%
- Finances – 44%
- High diabetes distress – 45%
- Good/very good quality of life – 40%
- Medication interference – 39%
- Leisure activities – 38%
- Work and studies – 35%
- Felt supported by others and had stronger relationships with family members – 28%
- Discrimination – 19%
- Likely depression – 15%
At the DAWN meeting in Holland, I heard the saddest story of discrimination, and fear of discrimination. The story went something like this:
In China a young woman was asked by her University administration to leave her studies and to leave the university …..because she had diabetes.
Another young woman heard about this story, and decided not to divulge to the university administration that she had diabetes. Sadly, this second young woman died from a hypo that that was not treated: she was afraid to treat for being ‘found out’, and nobody around her knew to treat because they did not know she had diabetes.
If you think you are being excluded, facing barriers or being discriminated against because of your diabetes here’s a few suggestions on what you can do.
Contact your local branch of Diabetes Australia and talk with their advocacy staff. They have experience in this area and also have some information online as a starting point for you.
Diabetes in the Workplace
Often a dilemma: tell my manager or not?
At the present there are no specific laws for people with diabetes. However, people with diabetes are covered by:
- Anti-discrimination legislation in the states and territories.
- The Human Rights and Equal Opportunity Commission Act 1986
- Disability Discrimination Act 1992
- Section 659 of the Workplace Relations Act 1996
It could be in your best interest to share with your employer your diabetes self care plan. This plan could help your employer to identify that you have a team behind your plan; that your plan can be adapted to fit your workplace expectations; and that you are able to put into place safety-nets for any adverse events.
If you work in a large organisation, your diabetes self care plan could also act as a guide for policy development within the workplace for current and future colleagues who may have diabetes.
Some people don’t want to tell anyone because they’re afraid they’ll be seen as disabled. Others want to educate their co-workers so that if they are showing signs of a hypo, their co-workers will know their blood glucose may be dropping and assist. You’d be surprised how many people live with diabetes or who have family members who have diabetes. When you tell them about your condition, they’re often understanding.
Because people with diabetes have protections under the law, your human resources department may be able to assist you reasonable allowances at work…..but you do need to ask for them.
Those can include things like:
- A place to rest while your blood glucose returns to normal after a hypo
- Breaks to go to the bathroom and to check your blood glucose levels or eat a snack
- Time off for doctor’s appointments or training / education for better managing diabetes.
You can find some more tips about diabetes in the workplace here
For those people who read our blogs but are not connected on Facebook, here are some of the discrimination comments other people living with diabetes have made:
“I wasn’t allowed injections on a plane, one airline refused to have me as a passenger many years ago, can’t get life insurance, I went out for dinner once and was attacked by a lady for injecting.. She called me a junkie, I get ridiculed at work when I have sick days and am made to feel guilt for having a disease I didn’t ask for, people have no clue what the disease is and it needs to be well publicised on TV of what it actually is, centrelink ridiculed me once being on a pump and I said ok then.. You wear it for 24 hours and pay all my medical costs and tell me it’s not a disability! They are the worst culprits of all over this disease.. No one should have to pay to have a disease, everything should be free and government funded just like a Methodone program for a junkie!”.
“Insurance companies. They just don’t want to know you after you say that you have diabetes”.
“I couldn’t get insurance for a personal loan due to diabetes (One of the big four branches). I was young and silly and signed anyway and experienced massive stress until it was paid off. If anything had happened I was financially screwed”.
“I have been driving for 24 year’s with out a blemish to my name but when I wanted to go for my heavy truck license I was told by a license instructor company they wouldn’t be able to help me because I had diabetes so I rang another company and did a corse with out saying I had diabetes and once I had done the test and past I had some paperwork to fill out before going to Vic Roads and 1 of the questions asked if I had diabetes , to which I answered yes ! They then said well you past the test so you’ve got your license but I wouldn’t be aloud to go for a heavier one now they knew ! And ever since Vic Road hassle me every year trying to talk me into giving my license up !!! And because I still use it they force me to see a endocrinologist who doesn’t even really know me and a eye specialist to say I’m safe to drive ……..I can’t just see my own Dr who knows me well ! I costs me a lot to keep it but I’m buggered if I’m giving it up just so they can have taken away my rights ! For the record I have very good control of my diabetes ( not that it’s easy ! ) and I’ve had it for 40 years but I am only 42 !”.
“Didn’t get a job once because I mentioned it in the interview. I had all the skills, qualifications and the right passion for the job but didn’t get it”.
“The only discrimination I’ve encountered in my 3 years as T2 is people telling me what I can’t eat!”.
“Trying to maintain a job is really hard cause once a person mentions that they have T1D,it’s like the employer thinks you’re not capable of the job at hand & then they get rid of you because it’s a liability for them.The biggest problem I’ve found so far is that there are quite a lot of people out there that have no understanding of us people who have diabetes whatsoever & they choose not to,as long as they don’t have it themselves then they really don’t give a hoot”.
“The looks and the comments from staff at work. It put me off doing public injections for years and doing it in the toilet is not hygienic. So I used to try to eat small things that I thought didn’t need injections but that was the early days when I didn’t quite understand about how carbs and diabetes work so my levels would go sky high and I felt terrible for months but I was too ashamed to go to the hospital because I knew they’d tell me off for not injecting but couldn’t face doing it at work so would just ‘survive’ and inject for any meals I had at home”.
“Couldn’t get loan protection on our new car because I’m diabetic, didn’t matter if it was diabetic reason for a claim or not, diabetic = untouchable”.
“I don’t know why every 12 months I have to get a Vic roads medical done! This year they tried to say I couldn’t drive cause I had a hospital admission, remind me not to go to hospital when I need to as a diabetic cause the next day I may have my licence taken away! It really is getting ridiculous to be treated like absolute crap by everyone who doesn’t have the disease, the fight with this disease isn’t the disease itself it’s the daily struggle to feel like you are a person and are just as valuable or ‘normal’ as the person who doesn’t have diabetes”.
I’m a nurse and in all honesty it’s the worst career I chose, understanding is very few and far between and to even fit in the time to check my bgl’s is a challenge”.
“People need education, they need to live 1 day in our lives in all aspects of it.. The struggle to get out if bed from tiredness, the morning bgl, the bolus or injection, the carb counting, trying to manoeuvre your pump in everything you do including choosing clothes for the day, making sure you have everything to get through a day, wondering if your high of low bgl is ok to drive to work and to bad if you are late for work.. The challenges are relentless and an emotional nightmare every second of every day”.
“It’s not taken seriously at all by anyone and the support is either minimal or non existent! I may sound negative although I’m not sorry about it, I’m tired of the lack of understanding, lack of support and lack of funding to help those that really desperately need it from the government. Will chemo or radiation possibly give us a cure? Will medical marijuana help the pain? Will an ice bucket challenge raise money overnight and fund everyone who needs a pump? “.
“We are forgotten and it needs to stop, I’ve had this disease for 16 years and not one member of my own family has any clue about what it even is! My partner of only a few months has educated himself and been a great support to me but he also didn’t know anything about the disease until he was put in a position of no choice but to learn!”.
“An advertisement for TV should be generated as a small movie with the reality of it, no cotton wool.. Pure reality of daily life! And not a fictional non diabetic actor, real people who have real lives! Let’s see the communities reaction after that! I wish all people with diabetes an amazing life despite all the daily challenge”.
David, Diabetes Educator