Diabetes: Discrimination, Professional Life, Plan Ahead... What do patients say?
Published Nov 9, 2018 • Updated Dec 4, 2020 • By Louise Bollecker
What are the issues concerning Diabetes that should be addressed by governments and organizations? What do you want those without diabetes to understand? What should be changed in the United States?
For World Diabetes Day this November 14, 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 able to seen from the outside, it is sometimes difficult to be understood and recognized as ill when you have diabetes. For @tiotte and @Danone 16, we need to talk more about diabetes and make others aware of it: "even counsellors for a household helper don't know about our disease". The State is also accused by our members: Adamien45 regrets that diabetics are forced to go to the doctor to renew their prescriptions, as well as the elimination of early retirement at full rate.
Depression
For @aldaniele, who has recently been diagnosed with diabetes type 1, she has felt "pretty depressed" since the diagnosis, especially having to deal with injections and changing and constantly monitoring her diet.
@dbtsgoaway feels the same sentiment, especially during the beginning... "it is depressing in the beginning and there are so many worries and fears... You will have ups and downs, mood swings, and weight swings..." @suecsdy also says that "Diabetes can be scary at first, and frustrating and depressing..."
Both @dbtsgoaway and @suec 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.
Workplace discrimination
There has been documented instances of employment discrimination of those diagnosed with diabetes. For @Lily81 too, it is necessary to start by tackling occupational discrimination: the urgency is to "train employers to respect the law when accommodation is requested".
If you fear you are being discriminated against or know someone who is because of their diabetes, @suecsdy states "It's like having another full time job. You always have to be aware of what to eat and when."
She has some great recommendations for being prepared and planning ahead: "[don't] leave the house without your kit, make sure you have some decent snacks with you because most vending machines don't have diabetic friendly choices; if you use insulin, remember to take it with you. Always carry a jug of liquid with you. Don't forget the sugar tabs in case you go hypo."
@oklahomagirlshares the same sentiments with @suecsdy recommends to "continue to find little ways to make life easier."
Read more about what other members say living with diabetes is like, comment, and share: @Millerm, whose husband has recently been diagnosed, she feels "scared[,] confused and just so overwelmed." She is unsure where to begin. For @Kaygee, she 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: @nestledinSEA, she has concerns in regard to having kids because she is diagnosed with diabetes.
@Silky83, a physician 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..."
However, @nestledinSEA had a positive story giving hope where she shared a story of her friend, whose husband is diabetic (so slightly different scenario), and had a very difficult time conceiving, despite spending thousands on in vitro, which did not work. Luckily they made changes to their work and personal lives, eliminating stresses and sought out accupunture and finally had a child... in fact two. You can read the uplifting story here.
So, will you join the conversation?
What shocks you about diabetes management? What needs to be improved?
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9 comments
As with many conditions that are not able to seen from the outside, it is sometimes difficult to be understood and recognized as ill when you have diabetes. For @tiotte and @Danone 16, we need to talk more about diabetes and make others aware of it: "even counsellors for a household helper don't know about our disease". The State is also accused by our members: Adamien45 regrets that diabetics are forced to go to the doctor to renew their prescriptions, as well as the elimination of early retirement at full rate.
DepressionFor @aldaniele, who has recently been diagnosed with diabetes type 1, she has felt "pretty depressed" since the diagnosis, especially having to deal with injections and changing and constantly monitoring her diet.
@dbtsgoaway feels the same sentiment, especially during the beginning... "it is depressing in the beginning and there are so many worries and fears... You will have ups and downs, mood swings, and weight swings..." @suecsdy also says that "Diabetes can be scary at first, and frustrating and depressing..."
Both @dbtsgoaway and @suec 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.
Workplace discriminationThere has been documented instances of employment discrimination of those diagnosed with diabetes. For @Lily81 too, it is necessary to start by tackling occupational discrimination: the urgency is to "train employers to respect the law when accommodation is requested".
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@suecsdy states "It's like having another full time job. You always have to be aware of what to eat and when."
She has some great recommendations for being prepared and planning ahead: "[don't] leave the house without your kit, make sure you have some decent snacks with you because most vending machines don't have diabetic friendly choices; if you use insulin, remember to take it with you. Always carry a jug of liquid with you. Don't forget the sugar tabs in case you go hypo."
@oklahomagirlshares the same sentiments with @suecsdy recommends to "continue to find little ways to make life easier."
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 patientsFor @Millerm, whose husband has recently been diagnosed, she feels "scared[,] confused and just so overwelmed." She is unsure where to begin. For @Kaygee, she 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: What does deviation mean? | Can someone explain to me the numbers
Medical devices and equipment that could be improvedFor 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 kidsFor @nestledinSEA, she has concerns in regard to having kids because she is diagnosed with diabetes.
@Silky83, a physician 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..."
However, @nestledinSEA had a positive story giving hope where she shared a story of her friend, whose husband is diabetic (so slightly different scenario), and had a very difficult time conceiving, despite spending thousands on in vitro, which did not work. Luckily they made changes to their work and personal lives, eliminating stresses and sought out accupunture and finally had a child... in fact two. You can read the uplifting story here.
So, will you join the conversation?
What shocks you about diabetes management? What needs to be improved?
Hi members, these topics and comments from our members withing both type - 2 and type - 1.
I encourage you all to join the conversation and discuss how you felt in related to this post, what shocks you about diabetes management, and what needs to be improved.
I hope you do not mind me tagging you!
@suecsdy @delhilinda @diabeticsurv @oklahomagirl @Kaygee @Carrier @Jazz93 @MissMolly @Keith16 @Diabstar @Millerm @sportfan365 @ericoltk @naptnm @Nuuk69 @1984survivor! @Jeanbean @Mollie @bonnie_calgaro @accidentaldragon @cpressley @cristonale @jas__44 @Silky83 @Judy349899 @Alisonportelli @nestledinSEA @tiasdaddy @vanessah10 @jndr11 @Harleydills @sarahsmilesx3 @Mitchell @Type1-47 @Tommylc1958 @aldaniele @rwhite7 @Steve2967 @dbtsgoaway
I think one of the hardest things, is the disease being invisible... I would agree this is probably an issue for most of those who suffer from a chronic condition that is not like a broken leg or cast on a arm, etc... because to the public we look normal, but on the inside we may be dealing with pain, depression, etc.
I think most of us when we are diagnosed suffer with depression and acknowledging it and addressing it is key.
*I have just joined and not sure how this works-
my husband is type 2...depressed, alienated, etc.-
doctor is not refilling insulin to be taken daily and he has been without for 5 or more days...makes for a bad thanksgiving
*we have called pharmacy and dr office and still no insulin, any suggestions?
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