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5 things any newly diagnosed type 1 should know

Discussion in 'Type 1 Diabetes' started by Juicyj, Jul 4, 2020.

  1. Juicyj

    Juicyj Type 1 · Moderator
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    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.
     
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  2. urbanracer

    urbanracer Type 1 · Moderator
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    Make it a sticky that we can refer people to??
     
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  3. Juicyj

    Juicyj Type 1 · Moderator
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    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.
     
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  4. KK123

    KK123 Type 1 · Well-Known Member

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    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
     
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  5. Lynnzhealth

    Lynnzhealth Type 1 · Well-Known Member

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    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.
     
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  6. Diakat

    Diakat Type 1 · Moderator
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    @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?
     
  7. Juicyj

    Juicyj Type 1 · Moderator
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    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.
     
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  8. Lynnzhealth

    Lynnzhealth Type 1 · Well-Known Member

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    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.
     
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  9. Lynnzhealth

    Lynnzhealth Type 1 · Well-Known Member

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    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.
     
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  10. baby_angel

    baby_angel Type 1 · Well-Known Member

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    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!
     
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  11. Lynnzhealth

    Lynnzhealth Type 1 · Well-Known Member

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    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.
     
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