Social Media and the Type 2 experience

Type 2
1

I have been to several conference in the past weeks that were about the impact of social media. I was the only blogger that I met that was doing advocacy for a chronic disease. Met lots of mommy bloggers and food bloggers but nothing about the social ills of society. So blogging and social media is still full of shiny happy people.....

I prose the question to TYPE 2 DIABETICS. this may sound mean but I am not interested in a Type1 diabetic view point. They don't even notice a problem most of the time..

1) how has social media affected you?

2) how do you use social media in respect to your diabetes (ie, support, information, meet friend, chat, etc)

3) why do you think there aren't alot of Type 2 diabetics using social media or have blogs?

4)what do you think can be done to have Type 2 diabetics to become more socially active?

5) why do you think Type 2 are not as vocal about their diabetes as type 1's.

2
  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.
3

Well, it must have been very amusing when you met yourself, LOL! :wink:

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!

4

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.

  1. 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.

  2. 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.

  3. 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.
5

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.

6

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
7

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.

8

Hi Christalyn: My big regret is that I joined TuD too late to connect with Clarence Haynes. :frowning: 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. :slight_smile:


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

9

  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.

10

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.

11

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.

12

I agree with mostly with what you have stated. I have been encouraging T2 folks especially those of color to seek out social media for support and information.

If you want to feel the wrath of T1's on this site all you have to do is disagree with them on an issue. I have certainly felt it because I am very vocal about my position. Please look up the video Manny and Emily did on Paula Deen diabetes announcement. I didn't care how most of the video was presented and I didn't care them calling Paula Deen "the Queen of Southern Cooking." This is rubbish... I am from S. Louisiana and all folks in the South cook the same way.

There have been people that openly state they don't want to be around T2's and the sensors here have been good to screen those folks out. Believe me I am not trying to souring your opinion. You have to do what is right for you. I just wanted you to know ugly experiences between T1's going after T2's have happened. I am glad they are not the common place as it use to be a few years ago.

13

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.

14

Not trying to alibi here, but I think that "Queen of Southern Cooking" label refers to the fact that she's a high profile media star, not the type of cooking itself. (Personally I adore southern cooking.) And some of her public pontifications about diet are just . . . well, silly. Actually beyond silly: harmful. Being a gifted cook doesn't automatically make you an expert on physiology or medicine.

I have had sharp disagreements with some T1s here that have provoked spirited debates. But -- so far at least -- none has degenerated into name calling or character assassination, which what is I classify as flame. I guess everyone's experience is their own.

15

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.

16

Wow -- great discussion here. I've been T2 for 20 years, and although to date have had no complications, I just spent 2 days in the hospital trying to get my bs down. The ER Dr. wanted to know why I came in -- didn't I think I could get them down at home? I again felt the naked bulb above my head at discharge between the discharge dr and nurse. Yes, I need help, but the shaming and fear mongering I got, and have gotten several times in the past, would tell me that the insanity is not just on my part. Would love to have a Db Anonymous group to help with the depression and the lack of resolve I seem to have. Does anyone know of a DA group for T2's? I too have learned to keep my mouth shut or at least be very judicious in my conversations. I have not written for years -- unable to voice anything to anyone or in a journal. Don't need or want to get ugly with anyone, but sure wish I could talk to someone who understands!

17

you can start you own group here on TuD. for depression for Type 2. You can start your own discxussion about depression

18

This is really interesting to run across, because the whole reason I sought out tudiabetes was in hope of finding a community where type-2s are welcomed and there's a community of us. There's a decent community of diabetics on Tumblr, which is where I came here from, but for some reason it's almost entirely type-1s, and while I don't think I've run across any out and out "you can't be here" there does seem to be kind of an undercurrent of "stay out of our tag/we're not like you; it's not OUR fault WE'RE diabetic" a lot of the time. (I don't mean to sound negative about it, but I do want to accurately share the vibe I get from it.) I'm not sure why type 2s aren't joining in on the conversation there more, or starting our own. I think I'm the only type 2 to post frequently in the diabetes tags on tumblr right now, and one of only a few that seem to post on them semi-regularly.

Anyway, I haven't personally found a lot of support there, and wanted some. So here I am. :)

1) how has social media affected you?
In general it's helped me to stay a little more in touch with people. I'm kind of an introvert, so I like that I can check in on social media when I'm up to it, interact with it on my own time, and check out for a while if I need to. I also really like learning from other people and sharing experiences, and that is WAY easier for me online than in person.

2) how do you use social media in respect to your diabetes (ie, support, information, meet friend, chat, etc)
I started a tumblr about my diabetes, and I've been attempting to join the diabetic community there a bit. It's very slow going, and the type 2s seem to be strangely invisible. Otherwise I've just read a few blogs. I'm hoping I can learn to use this site (it's set up differently from any other forums I've used, so I'm still learning how to navigate :) ) and find some new friends who "get" this part of my life, and be able to share resources and such, without feeling like I don't fit.

3) why do you think there aren't alot of Type 2 diabetics using social media or have blogs?
I HAVE NO IDEA and it's really weird! There are SO MANY of us! And this road can be tough - why aren't more of us seeking each other out? I do wonder if for a lot of us that theme of "It's your fault you're diabetic/you got yourself here" judgment makes it too depressing/scary to talk about it a lot or something. Maybe there's a feeling of I-need-to-just-buckle-down-and-fix-this-myself or something. Maybe it's too hard to find where we can connect? I don't know.

4)what do you think can be done to have Type 2 diabetics to become more socially active?
I'd like to see Type 2 social media be more visible. In spite of my fairly good Google-fu, I had a hard time figuring out where I could find an active community where Type 2s were present and welcome. I found tudiabetes when a type 1 on Tumblr mentioned it in passing in one of their posts. I came over here to look but for some reason I initially thought it was for type 1 folks only. It wasn't until I ran across another mention of the site at the end of this video that I decided to check it out again.
I've also looked for type-2 blogs, and really not turned up anything.
I'd also love if someone would make a resource page or something that lists different type-2 blogs, social media groups/sites, etc. That stuff just feels really hard to find.

5) why do you think Type 2 are not as vocal about their diabetes as type 1's.
I think there's a lot of shaming/judgment that comes (or that we fear coming) with telling someone we have type 2 diabetes. I know type 1s also get this a lot, thanks to most people not having a good understanding about type 1's existence and what contributes to it. But I think with type 2 we've absorbed a lot of that shaming/judgment into ourselves, so we feel like we deserve it when others do it, maybe. At any rate, I think it can make someone with type 2 a lot more reluctant to acknowledge it or "make a show of it" by blogging about it or something. Like, it can feel like it's something you're supposed to be ashamed of and hide away until you can "straighten yourself up and quit being such a fat slob" and say you overcame it.

Stigma! That's the word I've been trying to come up while writing this reply. I think there's a lot of stigma attached to being type 2 diabetic, and I think that contributes enormously.

I also kind of wish doctors, when you get the diagnosis or are trying to manage things better or whatever, would suggest that you check out online communities. It might help people seek out online connections.

19

Wow. Lots to discuss here. I'm sure you are going be to flooded with replies so I'll keep mine brief.

1) how has social media affected you?

Dramatically and profoundly. 95% of what I know about diabetes I learned either right here, or from self study. The other 5% came from health care professionals.

2) how do you use social media in respect to your diabetes?

In more ways that I have space to list here, but especially to learn from others, and share what I've learned.

3) why do you think there aren't alot of Type 2 diabetics using social media or have blogs?

ROFLMAO. You will find, if you haven't already, that that is not true of tuDiabetes. We have a great many T2s here and they tend to be vocal.

4)what do you think can be done to have Type 2 diabetics become more socially active?

Spread the word! Tell people. Tell your doctors, nurses, and fellow diabetics that there is a priceless resource of knowledge and support just waiting here to be tapped into. Ask your doctor if you can leave a stack of ruDiabetes brochures for his/her patients. (You can get them, free, from the TuD office.)

5) why do you think Type 2 are not as vocal about their diabetes as type 1's.

Again, I don't find that to be true of this community. Can't speak for others.

I have seen no other online community that is like this one. It's an endless source of shared experience to draw from, and even more importantly, a place to talk to others who get it -- who know what you are dealing with. There is nothing accidental about that; it's deliberate and premeditated. The founding principle of TuD, as enunciated by Manny, our founder, is "No diabetic should ever feel alone."

20

1) how has social media affected you? It has been a little helpful. I get to vent!

2) how do you use social media in respect to your diabetes (ie, support, information, meet friend, chat, etc) The private chat is very helpful to make me feel that I am not alone. I have also met a few friends that I am constantly in touch with as I have no family support so I have friend support.

3) why do you think there aren't alot of Type 2 diabetics using social media or have blogs? I think that of they are like my family there is NO support for us.. We ate really bad that is why we have Diabetes... That is what I am told by my family.. Its all my fault... I wished I would find a blog for type 2

4)what do you think can be done to have Type 2 diabetics to become more socially active? I think more Type 2 needs to be more outspoken... And to have more support!

5) why do you think Type 2 are not as vocal about their diabetes as type 1's. Because I believe we are told we did this to ourselves and don't deserve the help or assistance.

I think if we Type 2 had more support we can get thru all the difficulties better.