Community Strength: In need of the D.O.C.

As a blogger who’s very public about living with diabetes, I get lots of questions about diabetes from readers. I’ve had emails that range from “I have diabetes, now what?” to “Have you heard of this amazing tree root from Ghana that cures diabetes?” (the latter of which I tend to hit the delete button or send a smart-ass reply). And to me, that’s the coolest part of the diabetes online community – the fact that folks with diabetes and the people who love them can ask tough questions and have real conversations about this disease.

Last week, a reader reached out with a unique request. She’s asked that her name not be used, so we’ll call her T1Sister – her brother is 26 years old and was diagnosed with Type 1 diabetes just a few weeks ago. The brother, and his entire family, are shell-shocked by this surprise diagnosis, and like a lot of families, are now struggling with how to deal with it. T1Sister wrote:

“…my brother, at the age of 26, was just diagnosed with Type I Diabetes. It has been a huge transition for him, and a struggle for my whole family. My dad has been festering a lot of anxiety about it…I noticed that your blog has quite a few followers — I really enjoy how other people comment about your posts and it seems that you have established a very warm, safe community. I was hoping you could share my family’s question(s) on your blog and generate some discussion about it from others! (Do you ever do this kind of thing?).

I’ve recieved a lot of questions aimed directly at me, but this is new. T1Sister, in just a few short weeks, has realized the power of the online collective – she already knows that other people with diabetes are the best resources for better understanding this disease, so I thought we’d see if we could help her out. Below, you’ll find some the questions that she and her family have. If any of you readers out there are comfortable, please help try and answer her questions in the comments section. You don’t need to provide a long answer, or answer all of the questions – any insight would be appreciated. There’s nothing more powerful, comforting, or inspiring than the collecitve minds of the people who live this every day. T1Sister has shown her brother incredible support by reaching out to the D.O.C. – let’s support her right back.

1.)We are wanting to know the average timeline (if there is such a thing) for the newly diagnosed. (I hope I am using the right terminology, but again, still learning)! My brother was golfing over the weekend and could hardly make it 6 holes before feeling queasy, a big distinction from the usual 18 that he plays. He only walked a mile in an hour, but had to stop. How long does it typically take to feel adjusted and to learn how to understand, manage and control insulin levels and diet?

2.) How can he incorporate exercise back into his day-to-day?

3.) Since learning that he has diabetes at the beginning of October, he has been isolating a lot, and has hardly told any of his friends.What would be your advice for the amount of information people disclose to family, friends, coworkers, etc.?

4.) I am not sure what the emotion is that he is feeling. Sadness? Embarrassment? Maybe others have felt similar. Or perhaps people could shed light on this. My brother is an active, social, young male, and it seems that his whole life has been turned around.

5.) Do you know of any success in maintaining “some” insulin production by the pancreas by taking an “alpha protein” shot in early stages of Type 1 diagnosis?

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Comments

1. it varies too much individually. It took me a number of months

2. Very carefully. There are tons of us active D-folks out there, myself included. test often, carry sugar and if you don’t feel well, stop. It’s all trial and error but eventually you’ll find comfort. But whatever you do, incorporate it into your new lifestyle, don’t let diabetes take anything away from you.

3. that’s a very individual choice but I believe in sharing as much information with close family and friends. They probably want to know but are afraid to ask. Not to mention they can help especially if you aren’t able to help yourself.

4. He is probably feeling sad but more so likely feeling angry and frustrated. I was diagnosed at 22. His whole life HAS been turned around and it will take time to grieve. It’s a process similar to losing a loved one. Sounds harsh but it’s true.

5. I have no idea!

and lastly, connect with the DOC. do it via twitter/facebook/blogs. Do it anonymously or publicly. I found it good to read blogs of other adult diagnosed diabetics. I could go on forever here but I’m sure Alexis would get annoyed! BTW, thank you Alexis for sharing

Scully, I would never get annoyed!! Thanks so much for your comments, these are great :)

1. This is variable, depending upon how seriously your brother takes his treatment and personal care. Also, it takes a while to get used to the way your body feels with diabetes.
2. Exercise is crucial for good control, but it may be wise to get insulin and diet under control first, and then slowly bring in the exercise. If he is an “extreme” exerciser, point him to a Type 1 athletes group. These groups do not let their disease keep them from bicycling, kayaking, running marathons or whatever those maniacs are up to!
3. Isolating himself and what he tells others about his new disease are two totally different questions. Isolating himself I will answer in 4. What he tells others is not as important as the fact that he talk about it as he becomes more comfortable with the disease. He would do well to confide in the people he has traditionally confided in AND develop, over time, relationships with others who have Type 1. (They will understand what he is going through more than anyone–and they love being able to give any advice a person asks for).
4. He is grieving someone who’s still alive–himself–and it’s very difficult to deal with at any age (I was diagnosed at 43). I imagine that, at 26, most young guys feel they are invincible. He’s having that bubble burst in a very sudden and crushing way. He’s isolating himself because he is feeling so much that it’s overwhelming. He also is probably feeling depressed about it, too. If you think about it, who does he have to get angry with besides himself (despite the fact HE didn’t cause what’s happening)? This, too, is a life-long struggle because despite how well you take care of yourself, there are consequences to having diabetes.
5. Unfortunately, I know of no treatment for extending insulin production that has been proven effective. He may have some insulin production for a while. I didn’t have to take mealtime insulin until about six months ago, which was two years into having diabetes. This, however, all depends upon the individual. You should know that your brother can control his diabetes extremely well with insulin. It is a much more precise control than Type 2 diabetics achieve with oral meds alone.
One last thing I would say is be the same type of friend you were before he was diagnosed. Try to help him make his treatment just something he has to do, just another routine. And if you are especially close to him, expect a few moments where he confides to you that he feels overwhelmed, because it’s totally understandable and normal.

1) Test test and test again, he will eventually feel more comfortable getting to know his limits and where he might need to boos his sugars or cut back but without testing its like driving at night without lights.
2)I would say excercise has to be part of his day but I think will come more naturally as he becomes more confident handling D.
3)My daughter is six and she has type 1. She has no problem telling someone who may ask whats going on if they see her testing. If people ask me about it I let them know the basics but admire them for asking. Too many people dont understand diabetes.
4)This is a tough one as it depends on the persons character even without diabetes. He’s probably feeling really angry right now and wondering why him.
5)Don’t know about this. When Miranda was diagnosed all I heard from a lot of people was don’t let diabetes control you, you control it. I was very skeptical but I think it’s true in a lot of ways. I watch her everyday dealing with it but she deals with it on D time and not hers if that makes sense. She does everything she would do if she didn’t have diabetes, we just make it work!
Good luck..

As a recently diagnosed person with type 1 I can answer a couple of these honestly.
First, exercise. The best advice I’ve gotten and followed is to start more slowly than you’d like and keep glucose with you. Once he learns how his body reacts and more importantly how his body FEELS when he goes high or low, he will feel more comfortable exercising, but until then, unless a doctor asked him to, don’t stop doing what makes you feel good and “normal”.
Second, the emotions he is feeling are probably all over the board right now! For me, I think I went thru something close to the 5 stages of grief over losing the…simplicity of my life…combined with frustration every time I forgot to test or give myself a shot before I ate (a BIG problem for me (sometimes still) since my schedule is different everyday and its hard to build routines), mixed with the realization that when I don’t take my insulin its suddenly very dangerous…where, pre D, I could eat whenever and whatever I wanted. There is some relief that comes sometimes too…when you see your numbers go down and you realize you have control.
My Endo always says if he was given the choice between this disease and many others he would choose this one because I decide how well I’m going to control it. glass half empty, glass half full. He says it on almost every visit and sometimes its really annoying, and simple and I was to tell him that he does not have diabetes so he doesn’t get an opinion. But…he’s right. Sometimes, at first, it can feel almost like a death sentence (at least the death of what use to be normal in your life), but each decision we make effects the control we have over our lives…
Among the million emotions I’ve had since being diagnosed, this thought has made me want to have control, and do a good job managing my D.
I’ve found so much support and so many people who share my story online…I would encourage your brother to reach out online if he’s not ready to tell his friends…relating to someone can do a lot for them :)
Good luck!

1. Unfortunately, I would claim that there is no average. People adjust according to themselves. I adjusted in two weeks or so, but I was diagnosed very young, and didn’t become “set in my ways”. He’ll get used to it, he just has to let go of the shock of it.

2. Walk more often. Seriously, most people take cars, buses, and subways to very close locations to them. Walk the the laundramat, bike to the grocery store. Little things go a long way.

3-4. That’s really his own decision. If they don’t need to know, there is no reason to tell. If it seems he’s hiding his new disease out of embarrassment or something, then it’s an issue. Regarding his activity, there is no reason he can’t live the same life he used to, he just has to be a bit more careful and watch out for himself a little more.

5.) This is a questions for doctors, or at least one you’ll need to do a ton of research on. Quite frankly, from what I hear, it’s a rarity, but occasionally it does happen. Though I personally think it would be better if he just accepted this new condition, rather than try to fight it off. The transition will become much harder otherwise.

Kudos to T1Sister for reaching out! I would also recommend asking your brother’s endocrinologist if she, or one of the Certified Diabetes Educators that she most certainly works with, can meet with your whole family, to answer specific questions. To give you a frame of reference, I was diagnosed 8 months ago, at age 30.

1. For me it took a couple of months. Once my numbers were consistantly under 250 I felt a LOT better, and not nearly as exhausted.

2. I agree walking is a great way, but acknowledge that it will be a while before your brother can be exactly as active as he was. Exercise will lower your bloodsugar, figuring out how much is the key, so he must always Always carry sugar with him. For me, focusing on carb counting and getting my ratios right at first was the most important, so it was a couple months before I started adding exercise back in, slowly.

3. and 4. There are so many emotions that go along with this diagnosis – guilt, fear, embarassment. The number 1 thing to tell your brother is that he didn’t do anything to get Type 1! It isn’t his fault. I didn’t tell a lot of people at first, I think I was grieving as noted above, but I gained confidence as I gained control. And when he does start to tell people, he should be ready for the misconceptions – a lot of people know a little bit about Type 2 diabetes, which they think is the only kind of diabetes. So being ready to gently correct people when they tell him “you shouldn’t eat that cupcake” is a good idea :)

Best of luck to your brother and your family! Just take it one day at a time, and make a conscious decision to kick diabetes’ ass :)

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