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 @elizabethmar">@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 @richard">@richard0804 and @stillme">@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
Overall my family understands my diabetes and try to eat what I eat so that we aren't cooking more than one meal so that's a plus for us. However outside the home if we go out to eat it's a different matter entirely I have no idea what has been added to things in restraints, there are no better choices given to diabetics if they wànt a sandwich it's with brown or white bread I would like to see more shops offer brown nutty bread which is better for a diabetic as it is much slower releasing carbs. Another thing that up sets me is there is no real care for diabetics I would like to see proper diabetic clinics that diabetics can go to especially when they feel unwell, there should be dedicated clinics where you can go to get results, have a chat when things go wrong, put prescriptions in without having to wait more than a week as between ordering from docs to going to pharmacy has proved time and time again it takes too long, they promise a two day turnaround but on several occasions I have had to have emergency prescriptions as the ones I've ordered haven't been sent through by the Saturday and the doctors are closed. We always seem to have to chase reviews as well I used to be able to walk in and book it but now I have to wait till I am invited which in the end I was 3 months overdue, not good when you are doing your level best to keep your numbers down. I would like to see the service for diabetics thoroughly overhauled with more dignity and respect given for this condition, it is life changing, life threatening and for me personally I can better manage my condition with the full support of my diabetic nurse. Why can't we have proper care after all if your pregnant you get the care from conception right through to the birth and beyond, if you have heart problems there are clinics for that and so on, we need a clinic to give us full and proper support that is dignified and not left to cope alone as that is exactly how I feel Alone.
@CatherineD58 Hi Catherine,
Thank you for sharing your opinion, I am sure there are a lot of members who would echo your sentiments.
@joshua04 @brandx.fone @isophane @jessa112 @yetiandy @Skye77 @foxfan7 @SCARE1 @Carefreeblues @hackie54 @vinny p @Daisydef @Grundy @mandy1980 @sandie63 @mickeyj @Karen56 @Judtoy @salduc @hookey @Nanaclaire @Yannbuk @woodkentrob @Anne-54 @Saeeda @JulesB @Chantel @pat2014 @laurenswan49 @Deby101 @androoo @chris12a @Slowcoach66 @apotest @jonjon @rebeccaquinn @lillysmall2 @alancarter04 @Steven90 @Carla84 @garysmall5 @Emma22 @martinhodge03 @Jakeyboi992 @sarahm214 @ktaylor93 @herron69 @williamw @Dublin22 @ratchett @davidisdead @jfarmer23 @Yara london @InPain1956 @buttons @maylou @HHayes @katie44 @Trinity @pebblesgal @Belinda @Anette @Diggsy @eddier
Hello, I just thought I would tag you all to see what your opinions are on this article we wrote :)
Hi, re Catherine D58, I am fortunate to have T2 that can be kept under control without too much effort. As far as I can see the health service in the part of Glasgow where I live responds quickly to emergency prescriptions and essential health requirements. Diabetes UK (Scotland) is also active and there are other community initiatives that I know about. Other articles I have seen appear to indicate that there is a growing awareness of the importance of the condition across the whole UK.
My initial diagnosis was a few years ago and the medical practice took the time necessary to make sure I achieved the correct balance of medication and lifestyle changes to get control. Now it's up to me.
Something has to be done about diabetics needing help and support. They all need to have a special group in hospital or class to discuss what problems they have when they cannot do any more work due to tiredness and hypo problems. Every work place need to understand what to do and suggest plans to make the person feel better and looked after, so they all need a break when problems arises. Then when they feel better they come back to work as normal.
