I just need to vent. I was first learned about TuDiabetes when I was struggling to figure out my misdiagnosis as a Type 2 and I went to MedHelp to ask questions. A kind person on there gave me this website. I have since been returning to MedHelp which primarily has newcomers - people either wondering if they have diabetes, or newly diagnosed, and answering questions I felt qualified to answer. I also sometimes refer people here telling them there are thousands of experienced diabetics they can learn from. I felt good about doing this. Ironically, the problem started when MedHelp asked me if I wanted to be a moderator. I thanked them but said I disagreed with their policy of not allowing other websites to be referred to in posts. They said they thought of these other websites as "competition" (despite being very different organizations). I started only mentioning tudiabetes in private messages. Well apparently those private messages weren't so private as they disabled my account. I opened a new account in another name which lasted for a few days until they recognized me (I'm one of the only people who responds regularly to questions in the type 1 and type 2 forums). They then disabled that.
How sad is that, that because of some mistaken idea of competition they would stop someone from helping newcomers and people struggling to understand their diagnosis! Wow.
They are getting territorial? And they go so far as to disable your account if you question? What authoritarians. It is somewhat silly that they do this since these things are here for the people to see and use and to get some help. It seems you are better off without them. What a bunch of jerks.
What you want to bet that the people making those decisions are not diabetics or people with ANY chronic illness. I guess I shouldn’t be shocked when the profit motive rears its ugly head on the internet!
Yep, I don’t want to interact with people who think that way, but it is a “gateway” site for many people who are really struggling, don’t have access to medical care, etc. Some people are truly in crisis, not knowing for example, that what they are describing is DKA and can be life threatening and they need to get immediate medical help. Others are just in need of more information and support. It felt like a simple way to “give back”.
Well Welcome to Tudiabetes I have found the people here overly friendly and helpful and I hope you will help others here as all experiences are helpful.
No good deed goes unpunished. It is important for people to get their questions answered particularly when they are skating along a nice case of DKA. We should each join and then post our links to TuD. I dislike their attitude. To cut you off seems highly irresponsible. Is that other site helpful at all?
Thanks, wallskev; I agree with you. I’m just going to hope that some of those newcomers will find their way here where I KNOW they will get the help and support they need. I know I have!
That’s sad as well as absurd. Compeititon–geesh! Not good that private messages are being monitored either. Aren’t you glad you didn’t accept the monitor position to be spying on private exchanges?
Dissapointing for sure but I thank you for telling other’s about our site! I LOVE this site. I’ve learned sooooo much more here than I even knew about before I signed up here. With my 34 years of diabetes (at the time now 47 years) and a Type 1 daughter you would think I new all the newer stuff out there, Some I did & some I didn’t. LEARNED SOOOOOOO MUCH FROM THIS SITE!
And if they think of this site as competion. Then some how ppl here are doing something right!
I think it has its uses. It has name recognition and has forums on multiple illnesses, so people tend to come to it to seek info on various conditions. It also has “expert” forums where questions are answered by doctors and other experts, though they seem to have trouble getting doctors-the diabetes forum hasn’t had one for a couple years. The forums have very few people who are knowledgeable and dealing with the condition ongoing, at least for the couple issues I followed. That was how I explained my referring people on to the moderator-that it is an entirely different niche. Her answer was that they would have more experienced people if we didn’t keep referring them elsewhere. One of the only other responders told the person with dka to do yoga exercises or try cinnamon. uh, right. There are people posting from developing countries where they probably have limited access to healthcare.
…and therefore lowers potential income. Now, why was I thinking of it as a place to get help, not get rich!
Makes you love tudiabetes all the more, doesn’t it? They’d probably ban you for your inappropriate name, DF! Censorsorship lives. I actually posted a protest, it’s been up for an hour but I doubt it will make it through the day.
I went to MedHelp when first diagnosed. Didn’t find help there. I don’t belong to any other DOCs, but periodically check others out. TuD wins hands down as the best for knowledge & support.
You probably have to attain the upper levels of sneakiness for that, Gerri. Like other secret societies. They actually used to have JDRF volunteers on the Type 1 forum and those have disappeared; I wonder if they got disillusioned as well.
Oh I do, too, Doris, that’s why I wanted to share it! I think we would all be much more isolated and less knowledgeable without our Tu! I’m generally not a big social media person-actually I’m pretty anti. But this is a major exception for me!
Wait a minute…are you saying TuDiabetes has been around for 13 years???
You’re right! You’d have to prove yourself worthy before being given the keys to the inner sanctum of spying. Truly is disappointing to see gate keeping of info.
No, No, I’m sorry! I’ve had diabetes since 10. I was into my 34th year of diabetes when I found this site. TuD has been here for 3 years and though I took a loooong break from here I came back to it as soon as I could. I’ve now had diabetes 37 years. SORRY ABOUT THAT! Please forgive me.
Good I’m glad you got me. I’m also kinda anti social but like here it brings socialability out in me. You know there’s ALOT of things I don’t know about but I think I kinda know something about diabetes and I REALLY want to help other’s out there just getting the diagnoses or talking to other’s about the “dark ages” as I call them.
Oh you should! Maybe there is some way you can do that in your community! But I think we all help each other just by being here and sharing our experiences. And part of the advantage of a site like this is that there are so many of us with so many years of experience that it makes it that much more powerful when you either hear the same thing several times or get different opinions/experiences one of which will fit your own situation.
I did work with the newly diagnosed kids for YEARS expecially after my daughter came down with Type 1. Kids really think the die in diabetes stands true. Soooo many sad childern 1st diagnosed at “camp” It really helps for them to see someone as old as me with Type 1 since 10. No telling how many kids came to me & said “If you can do it with such a postive attitude I can too” So wonderful to hear that! Ugh now my drs appotiments kinda leave me to where I don’t have the time anymore. Weeeell that and my 3 g-childern. So now I leave the cards for TuD at all drs offices laundrymats etc. Where ever I go you can garrenntee that got a card. Usually a stack of them! LOL!
