5 things any newly diagnosed type 1 should know

[Juicyj]

Written by Stephen Ponder and from the sugarsurfing.com website, this extract is what all newly diagnosed type 1’s should be told, please share:

Type 1 diabetes often arrives totally unexpected. Shock, denial, fear, and sadness are usual first reactions. For most, the maelstrom of negative emotions swirling around the person and family will significantly influence what happens next. The following are the top 5 things I feel are essential to convey early into the diagnosis: if not at the very first encounter in the emergency room, hospital, or clinic. These points are based on 35 years of caring for hundreds of newly diagnosed persons with type 1 diabetes of all ages. They are tempered by my own 55 years of living with type 1 diabetes. They are not necessarily in order of importance, except for perhaps the first.

1. No one caused this. Many persons harbor feelings of guilt that something they did (or did not do) led to diabetes. Type 1 diabetes is the result of an autoimmune action taken against the insulin-producing beta cells in the pancreas. No acts of volition or omission cause this to happen. That must be made clear from the start. There is no room for guilt and shame in diabetes and it is vital to dispel this at the beginning. I aim for this to be the first thing I teach. Often there is an audible sigh of relief after this information is shared. This makes it easier to introduce the other key points.

2. A normal life is the goal. Life with type 1 diabetes has never been brighter. With ongoing support and diabetes education, all of life’s opportunities remain within the grasp of persons with diabetes. When complemented with emerging tools and technologies, the person with diabetes should expect a fulfilling life and career in whatever field of endeavor they seek. Barriers still exist in a dwindling number of professions, such as active combat military service. The future has never been brighter for the person or child with type 1 diabetes to excel in whatever life path they set upon.

3. There is no good or bad. Life is a never-ending series of grades, ratings, and report cards. Diabetes can easily get become overrun with self-judgment or the unnecessary judgment of others. No matter how well meaning, there is no morality in diabetes. This is a metabolic disorder not of a person’s choosing. It requires knowledge, experience and understanding to manage it from day to day. Diabetes care is a process, not an outcome. Since diabetes is overrun with numbers, it is a seductive trap to use words like “good” and “bad’ in association with these, either with oneself or in front of loved ones with the condition. Aim to avoid using “good” or “bad” to describe diabetes or its management. Blood sugars can be “in range”, “high” or “low” and A1C results can be “in target” or “out of target”.

4. Diabetes care is defined by one’s choices. It is said the average adult makes 35,000 discrete choices each day. Over half of these choices are habit-driven (i.e., we are not always aware of them) and the rest are consciously made. But the total number remains staggering. Our everyday lives are defined by these choices, both those we act upon and those we do not. Acts of omission weigh heavily in the world of diabetes. Just imagine the effect of not taking a scheduled dose of insulin, or not checking a blood sugar value before a critical activity. What about not eating a meal after taking a dose of rapid-acting insulin? Choices are the currency of effective blood sugar self-management.

5. Do not compare yourself to others. You are unique. We live in the post-social media world. Many of us constantly share intimate details of our everyday lives and innermost feelings online with strangers through online platforms. Whether through a post, image, or video clip, we aim for others to see us the way we wish them to, and vice-versa. The diabetes online community can be invaluable as a means of support for persons with diabetes. But it can also be viewed by some as a yardstick upon which we measure ourselves. This leads to unfair comparisons, and at times envy. It can also be a source of bullying and shaming. Everyone’s diabetes is different in thousands of ways. Avoid comparing your life (or the life of your loved one with diabetes) to others. Like the good-bad trap, comparisons typically lead to jealousy and frustration.

 

[urbanracer]

Make it a sticky that we can refer people to??

 

[Juicyj]

My 2 key points from this are ‘there are no good or bad’ as results we get from health care professionals are used to as a tool to explain how we manage our diabetes and the language then used in association with this can create an emotive reaction, so a ‘good’ HbA1c result can indicate we are doing well and of course will make us feel happy but a ‘bad’ result can then create many negative emotions which can compound our ability to ask for help and find a solution, correct terminology and phrasing is key in helping diabetics manage well.

I also see a lot of t1’s comparing and measuring themselves against each other on social platforms, remembering we are all unique is vital to avoid negative feelings of shame and depression. My management and daily routine and physiology is unique to me, it cannot be mirrored against anyone else.

 

[KK123]

I absolutely agree with all of the above (thank you @Juicyj, especially point number 3). We are all guilty of implying good or bad if I'm honest because we rate those with lower hb1ac's 'winners' and give rounds of applause when someone posts their 'low' morning level. I do know that this is mainly a response to an individuals hard work more than anything else but nonetheless it still contributes to this 'good or bad' stigma in all types of diabetes. x

 

[Lynnzhealth]

OK, now I'm really upset. My laptop is not working properly and the post I had just written disappeared. I will start again. I haven't been on this forum for about two years. Today I decided to check in and saw this post on the 5 things I need to know. I thought I was managing the emotional part pretty well, however, it seems I'm stuck in shock, fear, sadness and anger. I was just asking myself this week what did I do to get diabetes? I follow the LCHF lifestyle and get so frustrated when my BG goes up even though I'm not eating carbs. I so want to go out and eat something really 'normal', like a great big order of chips. I was (mis)diagnosed with T2 in March 2017, at 69, went on LCHF and everything was going well until a severe bout of DKA knocked me down in May 2019. I was then diagnosed T1 and am now on insulin. I'm now 72. My DE said I'm on the lowest doses that she's seen and doesn't understand when I tell her I'm not eating carbs. No sugar, no regular flours, nothing. I feel sometimes that I'm alone in this battle. I really need to reach acceptance so I can get rid of the sadness and anger, before it kills me. And, I know I need to be more regular on here because I need the support that I can't seem to find around here. I would really appreciate some tips from folks who are or have gone through all these emotions. Thanks. Stay safe and stay healthy.

 

[Diakat]

@Lynnzhealth it’s a tough journey. Low carb can help some people but if you feel that a more balanced diet will help you then go for it. T1s have the ability to inject for carbohydrates so do not need to be low carb although some find it useful.
You need to find a balance that works for you and allows you to feel happy and well.
Do you have family and friends to talk to about this?

 

[Juicyj]

Hello @Lynnzhealth - sorry to hear of your struggles.

Personally I found that once I’d accepted my lot then it was easier to deal with, less mental drain/weight and instead more focus on the actual treatment, there’s nothing you can do to change the diagnosis so accepting the diagnosis and moving onwards taking full ownership and handling of your day to day care is vital.

It’s good to talk about your feelings so using support whether here, with professionals or family and friends is vital, do talk though as you need to vocalise your emotions.

 

[Lynnzhealth]

@Lynnzhealth it’s a tough journey. Low carb can help some people but if you feel that a more balanced diet will help you then go for it. T1s have the ability to inject for carbohydrates so do not need to be low carb although some find it useful.
You need to find a balance that works for you and allows you to feel happy and well.
Do you have family and friends to talk to about this?

Thanks for your reply. I don't mind being on the low carb way of eating. I feel better physically when I'm on it and not eating sugar/wheat, etc. It's just when I am feeling low or anxious that I want to break out. This has been a strange year, plus other situations that I'm going through lately have been bothering me. My family doesn't understand diabetes and folks that I know that have T2 don't understand T1, and the ones who don't have either don't understand. I think I will have an occasional treat, but make sure I dose for it, although I'm not sure how one does that. I do know that wheat/sugar shoots my BG sky high. I need to be careful because I only have one kidney to start with, and at my age I don't want to bring on anymore complications, if I can help it. It's all just so confusing learning all this and it's not a journey that I wanted to take. I must say that I'm fortunate that I've only been dealing with Diabetes for 3 years. I don't know how others have dealt with it for so long. When I'm feeling good I tell myself that it's not going to dictate my life, and it doesn't. Anyway, thanks for your encouragement. Stay safe and stay well.

 

[Lynnzhealth]

Hello @Lynnzhealth - sorry to hear of your struggles.

Personally I found that once I’d accepted my lot then it was easier to deal with, less mental drain/weight and instead more focus on the actual treatment, there’s nothing you can do to change the diagnosis so accepting the diagnosis and moving onwards taking full ownership and handling of your day to day care is vital.

It’s good to talk about your feelings so using support whether here, with professionals or family and friends is vital, do talk though as you need to vocalise your emotions.

Thank you, Juicyj. That's what I need to do. Really accept it so I can give up the struggle. The exhaustion from 'fighting' it is very real. Yes, I need to take care of myself. Trust me, it's always been a long struggle to accept things my whole life. This one was so unexpected that it really knocked me back. Time to take control again. Thank you again. Stay safe and stay healthy.

 

[baby_angel]

OK, now I'm really upset. My laptop is not working properly and the post I had just written disappeared. I will start again. I haven't been on this forum for about two years. Today I decided to check in and saw this post on the 5 things I need to know. I thought I was managing the emotional part pretty well, however, it seems I'm stuck in shock, fear, sadness and anger. I was just asking myself this week what did I do to get diabetes? I follow the LCHF lifestyle and get so frustrated when my BG goes up even though I'm not eating carbs. I so want to go out and eat something really 'normal', like a great big order of chips. I was (mis)diagnosed with T2 in March 2017, at 69, went on LCHF and everything was going well until a severe bout of DKA knocked me down in May 2019. I was then diagnosed T1 and am now on insulin. I'm now 72. My DE said I'm on the lowest doses that she's seen and doesn't understand when I tell her I'm not eating carbs. No sugar, no regular flours, nothing. I feel sometimes that I'm alone in this battle. I really need to reach acceptance so I can get rid of the sadness and anger, before it kills me. And, I know I need to be more regular on here because I need the support that I can't seem to find around here. I would really appreciate some tips from folks who are or have gone through all these emotions. Thanks. Stay safe and stay healthy.

I know what you mean about the forum support. I definitely do better when I talk about things but feeling like a "bad diabetic" I buried my head in the sand and am only just getting a real grip on things again.

Besides the forum have you looked into any counselling/mental health services near you? Lots are online now and I found they can help you process things. Good luck!

 

[Lynnzhealth]

I know what you mean about the forum support. I definitely do better when I talk about things but feeling like a "bad diabetic" I buried my head in the sand and am only just getting a real grip on things again.

Besides the forum have you looked into any counselling/mental health services near you? Lots are online now and I found they can help you process things. Good luck!

Thank you for your reply. I will take a look online and see what I can find for my area. There's a long waiting list where I live for in-person. Thanks, again.

 

[Toby789]

Thank you for your reply. I will take a look online and see what I can find for my area. There's a long waiting list where I live for in-person. Thanks, again.

In addition to counselling etc articles on Wikipedia are a great source of well researched basic information (like an encyclopaedia). Then read free online medical articles etc. The reason I find this is helpful as many forums (including here) seem to be replete with people pushing fad diets or claiming they are unique, yet many do not seem to have any idea of the scientific research on this. It is not that hard to understand with a bit of patience and will inform your choices and decisions in a much better way than reading forums alone. Don't get me wrong, forums are good to see you are not alone but they can be quite bad in the way they push the whole credentialing process (eg here is the list of why I am special so you should now accept my unscientific diagnosis of your plight!). Much danger and heartache lies that way!

This is a relatively rare condition in the sense that merely being acted upon by doctors will never get you better, if we do not take an equal role in studying it and our numbers and seeing what happens ourselves, we do not get the best treatment. in my experience most medical people appreciate your knowing something about it, once they realise you have a bit of background knowledge and you are not spouting internet nonsense about PCOS or Morgellons or apple cider vinegar!

 

[Rose22]

I reached out to my specialist diabetes nurse team as I’d had very high numbers last few days, spoke to a different lady than usual but she was so helpful, calm and fully appreciated how tiring diabetes can be! She said it to me...that’s a first! She advised if I found anxiety becoming too much or feeling like it was getting on top of me to call and they have a psychologist member fo the team who can chat to. I felt really re assured by simply knowing I can do that, rather than feeling alone and wondering who will understand why I’m fed up or feeling anxious a out hypos etc.
I too find this forum really useful for hearing peoples experiences and feeling part of a group.
Take care

 

[Toby789]

I reached out to my specialist diabetes nurse team as I’d had very high numbers last few days, spoke to a different lady than usual but she was so helpful, calm and fully appreciated how tiring diabetes can be! She said it to me...that’s a first! She advised if I found anxiety becoming too much or feeling like it was getting on top of me to call and they have a psychologist member fo the team who can chat to. I felt really re assured by simply knowing I can do that, rather than feeling alone and wondering who will understand why I’m fed up or feeling anxious a out hypos etc.
I too find this forum really useful for hearing peoples experiences and feeling part of a group.
Take care

It is good to remember decision fatigue. We all have to actively take decisions that non-DMs get to make autonomously/homeostatically and do not even realise they are making. And we are constantly judging ourselves by the numbers and falling short of our high expectations, and then adding guilt about yesterday's food to it.

A potent recipe for depression, and I read somewhere that about 30-40% of T1s present with depression.

Add to the foregoing the fact that a large amount of what causes depression is physical, in the sense it is related to hormones, and we have a hormone disorder, it is no surprise that it can get you down. This may sound overly mechanistic but I find understanding why things occur makes it easier to accept and remedy as far as I can and accept occasional failures with equanimity.

 

[LionChild]

OK, now I'm really upset. My laptop is not working properly and the post I had just written disappeared. I will start again. I haven't been on this forum for about two years. Today I decided to check in and saw this post on the 5 things I need to know. I thought I was managing the emotional part pretty well, however, it seems I'm stuck in shock, fear, sadness and anger. I was just asking myself this week what did I do to get diabetes? I follow the LCHF lifestyle and get so frustrated when my BG goes up even though I'm not eating carbs. I so want to go out and eat something really 'normal', like a great big order of chips. I was (mis)diagnosed with T2 in March 2017, at 69, went on LCHF and everything was going well until a severe bout of DKA knocked me down in May 2019. I was then diagnosed T1 and am now on insulin. I'm now 72. My DE said I'm on the lowest doses that she's seen and doesn't understand when I tell her I'm not eating carbs. No sugar, no regular flours, nothing. I feel sometimes that I'm alone in this battle. I really need to reach acceptance so I can get rid of the sadness and anger, before it kills me. And, I know I need to be more regular on here because I need the support that I can't seem to find around here. I would really appreciate some tips from folks who are or have gone through all these emotions. Thanks. Stay safe and stay healthy.

This could be writing the above! I too was misdiagnosed as type 2, the bg skyrocketed, was rushed into hospital with ketoacidosis, and now I am on very low carb diet too. I have one unit for most meals, bolus, and 3.5 units for basal each morning. My last two A1cs were in the pre-diabetic range. I was diagnosed with type 1 last April, (2019), I am now 68 years old. Yes, similar feelings, it was such a shock, and filled with grief and sadness...but I am getting on with because there is nothing else I can do. I really enjoy my salads with fish, chicken, eggs, for protein. My consultant said that looking at my BG results, he'd think I did not have Type 1 as they were virtually normal levels. We sound like twins!

 

[Lynnzhealth]

This could be writing the above! I too was misdiagnosed as type 2, the bg skyrocketed, was rushed into hospital with ketoacidosis, and now I am on very low carb diet too. I have one unit for most meals, bolus, and 3.5 units for basal each morning. My last two A1cs were in the pre-diabetic range. I was diagnosed with type 1 last April, (2019), I am now 68 years old. Yes, similar feelings, it was such a shock, and filled with grief and sadness...but I am getting on with because there is nothing else I can do. I really enjoy my salads with fish, chicken, eggs, for protein. My consultant said that looking at my BG results, he'd think I did not have Type 1 as they were virtually normal levels. We sound like twins!

We could be. lololol Scared the heck out of me as I'm sure it did you. I definitely wasn't prepared for that. I am still confused. I was on very low doses of bolus at meals, however, this past few months it seems I need more, so I've been experimenting. I eat very low carb and when my BG goes up higher than I want, then I get frustrated. For instance, if my BG is 7.7 before lunch and I dose 1.5u and 2 hrs after my low carb lunch it is 13.7, I'm frustrated because that is out of range. I really want to be more consistent and stay within range. So, does that mean I didn't take enough? And, if my BG before lunch is 9.3, I dose 2.5u and 2 hrs after lunch my BG is 7.7, does that mean I dosed too much? My A1C in Sept. was 7.6. I want it to be lower, as in around 5. I live in Canada and we do the #s differently. And, if I don't eat as much protein as I need, would that make a difference? I have been reading Dr. Bernstein's book and trying to keep my BG down to avoid all the complications, however, I feel like I'm missing something. Any help would be appreciated. Stay safe and stay well.

 

[Lynnzhealth]

@Lynnzhealth it’s a tough journey. Low carb can help some people but if you feel that a more balanced diet will help you then go for it. T1s have the ability to inject for carbohydrates so do not need to be low carb although some find it useful.
You need to find a balance that works for you and allows you to feel happy and well.
Do you have family and friends to talk to about this?

Low carb works for me. If I even think about higher carbs my BG goes through the roof. I just get very frustrated at times. I also have depression and anxiety, which I had long before this journey. Nobody in my circle of family or friends understands T1 and most don't know diabetes at all. So, actually I don't have anyone close by to discuss it with. My DE wants my numbers to be higher and told me that complications wouldn't start for a few more years. WHAT? I don't want complications. I want pre-diabetes numbers or 'normal' people numbers. I see too many people dying from complications or having limbs amputated. Not for me, thanks. It's good to know I'm not alone in this boat. Stay safe and stay well.

 

[Lynnzhealth]

It is good to remember decision fatigue. We all have to actively take decisions that non-DMs get to make autonomously/homeostatically and do not even realise they are making. And we are constantly judging ourselves by the numbers and falling short of our high expectations, and then adding guilt about yesterday's food to it.

A potent recipe for depression, and I read somewhere that about 30-40% of T1s present with depression.

Add to the foregoing the fact that a large amount of what causes depression is physical, in the sense it is related to hormones, and we have a hormone disorder, it is no surprise that it can get you down. This may sound overly mechanistic but I find understanding why things occur makes it easier to accept and remedy as far as I can and accept occasional failures with equanimity.

I've never heard of decision fatigue, but that's exactly it. Some days I get so tired (frustrated) of making these decisions or even trying to figure them out. I am an all or nothing kind of girl and I need to know why for anything. I must have been a very annoying kid. Did anyone know that even taking Vitamin C can have an effect on BG? I didn't know that until I took some one day and my BG shot up. HUH? So, I read that part in Dr. Bernstein's book and yep, it happens if one takes more than 250 mg. a day. My brain is getting too old for all this. There is so much information to absorb that I forget what I read yesterday. Take care.

 

[Lynnzhealth]

I reached out to my specialist diabetes nurse team as I’d had very high numbers last few days, spoke to a different lady than usual but she was so helpful, calm and fully appreciated how tiring diabetes can be! She said it to me...that’s a first! She advised if I found anxiety becoming too much or feeling like it was getting on top of me to call and they have a psychologist member fo the team who can chat to. I felt really re assured by simply knowing I can do that, rather than feeling alone and wondering who will understand why I’m fed up or feeling anxious a out hypos etc.
I too find this forum really useful for hearing peoples experiences and feeling part of a group.
Take care

I feel just like you. My DE is more concerned with me being on low carb and wanting my numbers to be higher than I want. My target range is between 5-10. She doesn't mind if they're higher than that. I do. So, I feel like I don't have much support there. Thanks and take care.

 

[Lynnzhealth]

In addition to counselling etc articles on Wikipedia are a great source of well researched basic information (like an encyclopaedia). Then read free online medical articles etc. The reason I find this is helpful as many forums (including here) seem to be replete with people pushing fad diets or claiming they are unique, yet many do not seem to have any idea of the scientific research on this. It is not that hard to understand with a bit of patience and will inform your choices and decisions in a much better way than reading forums alone. Don't get me wrong, forums are good to see you are not alone but they can be quite bad in the way they push the whole credentialing process (eg here is the list of why I am special so you should now accept my unscientific diagnosis of your plight!). Much danger and heartache lies that way!

This is a relatively rare condition in the sense that merely being acted upon by doctors will never get you better, if we do not take an equal role in studying it and our numbers and seeing what happens ourselves, we do not get the best treatment. in my experience most medical people appreciate your knowing something about it, once they realise you have a bit of background knowledge and you are not spouting internet nonsense about PCOS or Morgellons or apple cider vinegar!

I have been reading Dr. Bernstein's book since he's had T1 since 1946 and has researched it for many years. I also read the Diet Drs and articles from different well-known hospitals in the States. My blood work results have always been good since this started so I know that part is good. Another thing could be that I had bariatric surgery (stomach stapling) 40 years ago and nothing absorbs properly. This could be contributing to the whole situation. I know all things combined play havoc with T1. Thanks and take care.