Replies to This Discussion

Permalink Reply by Pastelpainter on August 12, 2011 at 12:57pm

1. It makes me feel hurt and angry because in my case it simply isn't true.
2. I use TuD as a social media site, but other than that I mostly ignore stuff about diabetes unless it comes from somewhere reputable. I am on various yahoo groups for other activities.
3. Everyone 'knows' Type 2s are too busy stuffing their faces to blog!
4. In my case I need help to deal with my almost constant low grade depression that makes so much too hard to do.
5. Because it is boring to eat well, exercise constantly and ultra hard to socialise over a meal. Whats to talk about, just jogging along taking your tablets and/or insulin and dealing with other age related illnesses.

Permalink Reply by Jay on August 12, 2011 at 4:25pm

Well, it must have been very amusing when you met yourself, LOL! ;)

To answer your questions:

Social media has helped me learn more about all sorts of things, including, but certainly not limited to diabetes. I use it to find out about studies and articles that I might have missed, to make friends, and for mutual support, and to learn new things, which is why anyone uses it.

I also use it to help point others in the right direction. There are a lot of great books for diabetics, which provide reliable info, and I try to let people know about them. I don't think you should get medical info from "social media", unless you're going to do your own research and go to reliable sources to see if what you read is true. Social media is great for emotional support, but you can't rely on it for medical advice.

There are some type 2's out there blogging; but yes, there should be more of them considering that type 2's far outnumber type 1's. Maybe type 2's are less vocal than type 1's because of the flamewars that continue on the internet. Terms like "fatty" don't win friends. Sadly this often comes from other diabetics, and not just ignorant teenagers. There are plenty of adult bullies who should know better. All it takes is one or two to start it all up again. Once burned, twice shy.

I think many diabetics aren't as vocal as they'd like to be, because they've learned the hard way that it doesn't pay to speak out when you're outnumbered at a site. Even type 1's can get attacked if they support type 2's too vocally on some sites.

As for more type 2's blogging, I doubt that there's anything we can do about it that we aren't already doing. People have to want to write about it. They're probably just doing it elsewhere.

Maybe type 2's are less vocal when diabetes runs in their family. A type 2 my not be taken completely by surprise by the diagnosis. If it came out of the blue, you'd probably be more outraged by this disease. Perhaps a child or young person diagnosed with type 1 will experience a lot more shock than an older type 2 who has diabetes in their family.

Getting a diagnosis like when you're young can make you very angry and ask "why me?" Experiencing this during your formative years can have a huge impact on your character. In many people it brings out their best. In a few, the opposite happens and the anger never goes away. Some people grow up fast, some never grow up. This is true regardless of diabetes or any other circumstance. That's just the way people are.

I hope I haven't offended anyone, type 1 or 2, or anyone inbetween, but we all know there's a problem. There's been an ongoing flamewar on the internet for years against type 2's. Unfortunately it rears its ugly head everywhere and its not going away until we refuse to put up with it. When we all stand up against bullies, the bullying will stop.

As for blogging, some people are moved to write, others aren't, and others have learned not to.

Donning the fire retardent suit now and ducking!

Permalink Reply by Cathy Jacobson on August 12, 2011 at 5:24pm

I'm going to start at the bottom and go up:
5) Because we can control our diabetes for the most part by eating, exercise and meds....no one sees what we are doing....we don't leave to give ourselves medicine, we can do it at the table, at our desks etc. It doesn't appear that people sense the importance of us, because we don't make it important to what we are doing to keep ourselves healthy.

4) I think any time there is the opporrtunity to have a booth, table, conversation, etc about health issues, we have to be in the forefront to make that known. IT is county fair time in my area, and along with the local ADA and Hospital groups having a booth at the education buildings, there should be a booth for type 2 diabetics, and the importance of being tested and how important treating your diabetes. We need to have a face put with that type 2 diabetes. Most of the attention is given to type i stars or famous people, so where is our spoke person? Sad to say, but we don't promote ourselves. We had talked a lot here lately about not telling anyone, especially our bosses that we have diabetes, I think it's important the they know and then SEE that we can do the job, we can be at the job, just as anyone else.

3) I think we are ashamed because people have associated being overweight, not taking care of yourself being slovenly with type 2 more so than they have ever done with type ! . I think we have to get over that stigma and advertise ourselves
It works a lot better for me to say it about myself than anyone else. When I ask for a flavored coffee, I often times say, can I get that "skinny", sugarless, etc because I am diabetic....or even when I order at a restaurant, I ask what things on the menu are sugar free, low fat, I have a special diet for my diabetes. We ourselves can't be afraid of the term type 2 either.

2) I belong to three or four different media sites, put my 10 cents in, but gather more. I have gotten TUdiabetes post cards and left them places for people to see them. With every new e-mail, letter I write, I ask if they have had themselves and families tested yet.

1. It has made me a better diabetic, offered me support of people who are living with the disease and know what I am going through....more so than any doc who studied it in medical school of 10 minutes.

Permalink Reply by Christalyn on August 13, 2011 at 9:44am

Another reason why I posed this question is this. The founder of this site speaks at various companies and academic institutions about social media and diabetes. In a resent presentation about social media that he posted on his linkedin DHF site spoke about the social media and how it has done wonders for diabetics. In this presentation were examples of Type 1 diabetics. Not one Type 2 diabetic or person living with Type 2 was mentioned in this presentation that would be seen by the masses.

the founder has mentioned several times that there are 40% Type 2 on this website. I dispute those numbers. Yes there may be 40% signed but very few actually stay on here and chatter like Type 1's. I don't think he is interested in trying to keep Type 2's on this site.

Missing from this generic presentation was how social media is lacking in the Type 2 experience and how we could get more Type 2 involved. Missing was the ethnic factor in Type 2 diabetes which should never be ignored since it more prevalent in the minority communities. Missing was the economic factors of using social media to reach out to those that are disadvantage in our own country let alone internationally.

I am one of the few Type 2 bloggers that is extremely vocal about my condition. I am not popular with the folks on twitter because I am Type 2 and I don't get involve with the juvenile chatter of most of the type 1's. I have been asked to join the DHF but I have not seen any evidence of what they are doing for Type 2 diabetics.

Permalink Reply by Peetie on August 13, 2011 at 11:25am

Hi Christalyn: I agree with you. We need more T2s on this site. I would like to preface my answers by saying that, while I have heard of the flame wars, I have never experienced them. So many T1s and LADAs here have been more than helpful to me. I did get very upset during a discussion but I was upset with the protocols set out by the CDA which seem to give the doctors and endos the freedom to experiment on T2s with any oral med that comes along. The fact that they have declared T2 to be a progressive disease seems to remove any accountability.

1) I am new to Social Media. First, I was so busy over the years learning computer skills after work I was not really interested in spending any more time on the computer than I had to. Second, I was strongly warned by my employer and my union not to participate. I joined Facebook when I realized that it was the only way to view the pictures of friends and family as they were no longer adding the pictures to their emails.

2) Right now I just use TuDiabetes. I tried the other forums but found that they were too time-consuming. I join groups, post and join discussions and have received a great deal of help. I have added a few members to my Facebook Page. I have also checked out some of the blogs and if they have a Facebook Page, I "like" it and then I get the info coming in every time they post. I suspect that one day I will attempt to meet some of the members who live in my area.

3) I did post a discussion about this myself. There are a few Type 2s with good blogs such as "The Poor Diabetic" and Alan S. Jenny of "Bloodsugar101" was originally diagnosed as Type 2. I don't know how to access your blog.
It is interesting to note that many of the T2s who communicated with me when I began in June of this year have either stopped posting or have changed their Type. Even Natalie, who started the T2 group and is always so helpful, now lists herself as T1. In a recent discussion, based on a conference that Natalie attended, she noted that there are 14 identifed types of T2. I wish I knew where to access this information. I think that this would explain why T2s don't always have so much in common.

4) I think that reaching out through Facebook would help people like me. Also, everyone needs to work to change the way TV portrays T2s. Let's focus on the successes rather than the failures.

5) The answer to this question is the shame. I belonged to a group of T2s for awhile. Every single speaker began by saying that if we would only stick to the diet and exercise, we would be okay. This usually took up half of the presentation. Only after they had shamed and blamed would they go on to their area of expertise. By that time everyone was so angry that they found it difficult to listen. Hmm... I also think that we are too busy exercising to be vocal.

I think you should personally invite Manny to join this discussion. He might have some ideas. After all, I think he was once diagnosed as T2.

Joanne

Permalink Reply by Christalyn on August 13, 2011 at 2:58pm

Manny is quite aware of the situation with Type 2 diabetics and is not focused on it. He is not interested in even discussing ethnicity and diabetes. Have I asked this question .....no.... I am going by a person's actions. I have not seen any evidence of it. Its more important to tell folks how many people are on Tudiabetes despite their individual activity

I have been apart of several flaming discussions w/Type 1's and the ignorance is astounding. Normally if get into a conversation that is biased it will get shut down because I do not allow folks to be ignorant to me or to my condition. There have been Type 1's be ultra nasty to a Type 2 's that just found this page and was looking for support.

Online Type 1 diabetics can be super self centered,infantile and cliche-ish... They have not shown much concern about Type 2's and their issues or feelings. However outside of of the internet in my city...I have wonder Type 1's that were very understanding.

I have a blog but I am not allowed to mention it on this website because I sell merchandise and I am not giving this website a cut of my money. I donate to UCLA diabetes center. My website is stronger and ever!!If you have email send it to me and I will send you the link... I have a nice video of how I used social media to help an international diabetic.

I understand the newness of being apart of social media. There are great website as well as youtube videos that can explain how each medium may work. I have a few of these on my website. I will say that you should always be careful with what information you put in your profiles. Nothing says you have to tell the truth or even answer the question.

Permalink Reply by Peetie on August 14, 2011 at 4:53am

Hi Christalyn: My big regret is that I joined TuD too late to connect with Clarence Haynes. :( I was born in Toronto and I still live a short drive away. Really wish I could have met him. How inspiring that a T2 for more than 50 years could be so active in his 90s!!!

I agree with Jay that, because T2 is genetic, one is often not so shocked. I am 3rd generation myself. My grandfather (T2) participated in one of Banting's first trials. He passed in 1966 at age 82 (no complications!) My uncle who passed at age 92 also used insulin. My aunt is 82 and still going strong with diet and exercise. My brother, some cousins, 2nd cousins.... all at some stage of T2. How about you? We need to get some of these older role models on here for inspiration! Hmm... my aunt uses email so she might be game... then again she is so busy running around caring for everyone else. :)

I'm not really up on the ethnicity statistics myself. Maybe you could post that question on another discussion.

Still think you should invite Manny to join in. You won't really know if you don't ask.
Joanne

Permalink Reply by Christalyn on November 19, 2012 at 12:25pm

Ethnicity is very important in diabetes. You see it mentioned all the time in major studies and even on the ADA website. It is just the personal blogs mainly by T1's that shy away from it.

Being Black, I have no problems talking ethnicity since it is a way of life for me. Since moving to California I am surprised with people asked me if I am mixed with something.

Diabetes is ravishing Black and Latino communities mainly because of poor distribution of education and awareness. Similar to the digital divide. There are Indian communities in the USA and Canada that have a high incidence of Type 2 diabetes in teenagers and the whole family.

I have been racked over the coals to many times for my thoughts and stats about diabetes/ethnicity. Here they want to live in a Kumbiya world.

Permalink Reply by David (dns) on November 19, 2012 at 3:05pm

And as bad as the lack of resources is in minority communities -- and it is bad, no question -- it's an order of magnitude worse in third world countries. Talk to a diabetic in rural India or Africa some time. It'll give you chills.

Permalink Reply by picklebird on August 14, 2011 at 4:17pm

1) The social media on diabetes have taught me a lot. It hasn't actually been a good way to make friends, however, face to face is always best. I don't twitter or use Facebook, so that makes me even more old fashioned I suppose.

2) Social media gave me a lot of ideas of what to do, and insight on what could be, if my type 2 ever progresses to need more meds than I take now. Many people write in an entertaining way, too.

3) My guess why type 2's aren't active after awhile is that we tend to think we got it all figured out and go on to live our lives without paying as much attention as type 1's have to. I need to check BG just twice a day and I got it memorized what I can eat and at what amounts. I do make errors, especially going out to eat. Maybe some type 2's stop being involved when they see that it is a lot of type 1's with different questions to wrestle with (such as pump problems).

4) dunno. Manny said he had asked in a survey for Tudiabetes and it was basically keep things the way they are now. I would like it to be less "messy" to access stuff. For example, one is forum and one is blog and it's not really a difference, at least not to me (very tech impaired, eh?) Maybe we splinter so much into subgroups, all get weaker??

5) I'm not vocal for personal reasons. I already know it's a waste of time for me to speak up on anything. Yeah, that is not the attitude that others should have, but I have it because I truly don't have the skills to make a point.

Permalink Reply by Sillygirlzam on October 16, 2012 at 5:13pm

I'm primarily of FB, but I use Pinterest when I find interesting blogs or articles I find interesting. Since being dx with t2 since march, social media has helped me vent a little, because I don't want to be sounding like I'm complaining all the time. But it is reassuring to meet with friends and they ask how I'm doing because they see some of the struggles I go through. I find that I'm more active on FB when things are going much smoother, and I pull away because I don't want to overburden my friends and family. My primary contact with my dad is through FB since he is constantly overseas. I especially don't want to say too many negative things because he too has been t2 for over 10 years and he's often alone because my mom, also t2 and on FB, cannot travel with him. I think it is too happy land out there, and for me, it was starting to get to me.

I started thinking I was the only one feeling the way I was feeling. After all, my mom never complains about her d. I think part of that is she doesn't want to worry me and the other part is that she keeps hearing my grandma, RIP, to tough it up and not show she's struggling. It's very isolating! It's a cycle that repeats with me, because I too do the same with her because her d is far more progressed than me, and the stress of her knowing I'm having a hard time puts undue stress on her.

I think a lot of t2 aren't as vocal in social media because there's such a stigma to it. When someone thinks t1, they think, "oh, their body can't help them." But with t2, it's more like, "they got themselves into it, they deserve it." Pretty sad, since that isn't trues for me. I got the bad genes, I had gestational diabetes since I was pregnant with my twins and had gd with the following 2 pregnancies, each time the gd got worse so I was insulin dependant with my last pregnancy. I kept my weight down, followed my diabetic meal plan and suffered no complications. I kept everything in check because I knew the deck was stacked against me. 4 years after falling into the the prediabetes stage via m a1c, I was finally pushed over 7.0 so now I'm diabetic. I've done all I can and I've had a difficult time losing 20 lbs due to one of my antidepressant. I'm slowly lowering my dose so that I can be rid of it and rid of the extra 20 lbs, because they aren't helping me any.

I'm so glad I started looking outside of FB to talk to other people struggling just like me. So glad I found TuDiabetes. It's easier here to talk about daily struggles because we can all encourage one another.

Permalink Reply by David (dns) on November 19, 2012 at 10:16am

Wow. I must be living in an antiseptic bubble or something. I have been T2 for 17 years and have never been on the receiving end of a flame. The T1's that I correspond with here have been uniformly courteous, receptive, and just basically grown-up about it.

I spend a lot of time on tuD. I used to spend a lot of time on FB but recently quit it and deactivated my account for reasons entirely unconnected with diabetes.

I do find social media useful. Right now my control is the best it has ever been. Reviewing what I have learned about managing this insane disease, I'd say I learned 49% of it from self study, 49% from social media, and 2% from the ADA/Medical establishment, much of whose advice and traditional wisdom is just plain wrong.

I also find the chat room here to be extremely valuable, for mental support, as a bank of experience to draw upon, and even for comic relief. This is especially so now that it is staying up 24x7.

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