Diabetes: Discrimination, Professional Life, Plan Ahead... What do patients say?
Published 9 Nov 2018 • Updated 4 Dec 2020 • By Louise Bollecker
What are the issues concerning Diabetes that should be addressed by governments and organisations? What do you want those without diabetes to understand? What should be changed in the United Kingdom?
For World Diabetes Day this November 14th, we are highlighting some of our members responses.
Here are the solutions they propose and the findings that shock them.
An invisible condition from the outside
As with many conditions that are not seen from the outside, it is sometimes difficult to be understood and recognised as ill when you have diabetes. One of our members, @hackie5 agrees with this lack of recognition concerning her disease," I have a lovely family but still feel they don't understand how much I'm affected by my illness". It seems clear that we need to talk more about diabetes and make others aware of it
For @elizabethmary , who has recently been diagnosed with diabetes type 2 last year, she has felt "I'm shocked and scared and a little depressed" because diabetes requires a complete lifestyle change and a hyper awareness of what you are eating and drinking.
Both @richard0804 and @stillme say however it gets easier to deal with as time goes on and you become accustomed to the changes in lifestyle and how to manage, stating that your "doctor is a great help" and that "you get used to altering your fast acting insulin"
Workplace discrimination
There has been documented instances of employment discrimination of those diagnosed with diabetes. Many of our members have displayed a reluctance or hesitation to share their diabetes with their employes and coworkers @sophHaj was concerned when starting in her new job, "Should I tell my colleagues and my boss? Would it make them look at me differenty? And treat me differently?"
If you fear you are being discriminated against or know someone who is because of their diabetes, learn more about employment discrimination and your rights.
The need to be prepared and plan ahead
One of our members considers her diabetes to be " like having another full time job. You always have to be aware of what to eat and when."
The difficulties continue when eating out in restaurants because you lose control over what is put into the food and how it is cooked. @asranda shares her tips for eating out, "What I do is just keep count of everyhting and ask all the ingredients everytime, I know it is a bit unconvenient sometimes, but I think I am now used to it"
Read more about what other members say living with diabetes is like, comment, and share: What it is like living with Type 2 Diabetes | What it is like living with Type 1 Diabetes
A better relationship between doctors and patients
For @stephenmcd, they felt one of the most intimidating aspect of their diagnosis was "being give an insulin pen for the first time to self-inject" and knowing they would have to do this forever. One of our members wishes the medical staff would be more understanding/supportive: she fears "going in for [her] next a1c test..the last one was 6.9 and [her] doctor at that time stressed [her] out."
For @Totor644, it is necessary to "improve the quality and duration of the exchange periods between patients and doctors: more time for consultations (30 minutes and not 10) and for the annual check-up..."
It also seems to be a consistent concern among patients that they do not feel that have a good understanding of the disease and the monitoring of numbers that go along with it.
Here are some discussions between members discussing the numbers and monitoring: Blue Glucose Monitor
Medical devices and equipment that could be improved
For its part, @Yvelise is interested in the improvements that its medical devices could undergo: "I appreciate every day my mini POD insulin pump from... But couldn't we plan a change of OmniPod, operate it without batteries and recharge it like all devices connected with a cable? This would allow it to be built smaller and less heavy to transport."
New discussion created dedicated to recommendations and improvements in equipment you would like to see: Type 2 Discussion | Type 1 Discussion
Concerns with having kids
For @leighbee38, she already has a child with diabetes and she worries about what he is eating throughout the day to maintain his I:C ratio.
@Kaygee diagnosed with type 1 at age 4 who is hoping to have children, has fears magnified with the idea of "being diabetic and pregnant. This was further magnified by her husband's mother who said "diabetics have a hard time having babies..."
Testimonials
Read some of our members inspiring stories and tips about dealing with diabetes, such as Stephen's guidance on living normally with type one or these helpful nutrition tips from Elisa.
So, will you join the conversation?
What shocks you about diabetes management? What needs to be improved?
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13 comments
I agree there is very patchy support for diabetics, both from doctors and the world at large. The issue of workplace colleagues and bosses,,they need to know for safety reasons and be able to help you if needed, also the first aiders as they have had a little bit of knowledge when they qualified, as part of the first aid at work. It has been noted that when a diabetic is having a hypo, they could be considered as drunk, and somebody knowing how to help you, and what the levels of reactionings you have so that they get the help and you have someone there..It goes as read that you have your monitoring kit, spare meds and hypo kit or something if needed, especially at this time of year when the festive season makes people go ott with food and drink. You should get support in the workplace and you cannot be discriminated against, and if you are in a trade union, get them to support you if the going gets on top of you,, Scotland sounds as though they are helping diabetics a lot more than here in England,,I only see the dsn or the consultant when they get to me on the list, so I just plod on. I too am also fed up trying to keep a balance, and it is depressing,,they were trying to get me to go onto insulin, I said no,,I would have to stop driving as the dvla requires you to have 6 months to maintain balance, and if not no driving licence. There seems to be help coming for the type 1 with a new system of monitoring, but nothing new for us t2's. ttfn
Karen56
Firstly I am a Type II diabetic, I must tell you that you DON'T necessarily lose you driving licence for 6 months when you go on to insulin. I was put onto insulin and I had to tell the DVLA and now I have a RESTRICTED 3 YEAR licence, which means that every Three years you have to renew your licence. No fears about being stuck and can't get out, it's ONLY a RESTRICTION. Nothing to worry about.
The ONLY time you LOSE your licence is if you CANNOT CONTROL your diabetes.
I live in the West Country, Wiltshire, and I can honestly say that if I need anything be it advise or repeat medication or need to go in to see the Diabetic Nurse I just pick up the phone and make the necessary arrangements or send her an e-mail. I have no problems at all not even getting to see my Consultant. I usually try and give a couple of weeks notice and it's all arranged.
If you can build a relationship with your Healthcare team at the surgery and the Diabetic Specialist Nurses at your local hospital, you'll find that things happen much quicker. Get to know them and them to know you and I think that you'll be pleasantly surprised.
Take Care of yourself my friend. Warmest Regards Richard
Sorry but I've treated the worst of the worst, I feel more a whipping boy.
We have a nasty, spiteful, vindictive Government in the UK, and it shows in all Government departments, Hostile, nasty and spiteful in kind. Not much better than gangsters. I can only go on how I was treated, I tried to help myself out with lifestyle changes, diet even lost lots of kilos, and yet It came across that I had made my situation much worse. In my case, I lost weight, took up regular exercise, changed my diet, yet as I've said made my position worse, to a point where whatever I did I was wasting my time and making their jobs difficult, how can you work with a system that punishes you for trying improve your lot!
@richard0804 I was diabetic II and while having cancer treatment I had to switch to insulin. Therefore I was forced to inform the DVLA who duly altered my licence to the 3 year period. But I lost 6 stone due to the cancer treatment and returned to diet control for my diabetes. I therefore informed the DVLA that I no longer use insulin and only diet controlled diabetes so had my licence fully restored. So a period of a few months I had my licence transferred to medical and back to ordinary. The period I was receiving cancer treatment I was on morphine so could not drive anyway. So other drugs affect your entitlement to drive and you will only be banned from driving for diabetes due to not following procedures to prevent low sugar events. My brother a diabetic on insulin for twenty years and never informed the DVLA, had plenty of accidents unrelated to diabetes, never had any investigation. He has never had his GP or medical professional report him, despite losing toes and many serious diabetic issues.
