That is all I have to say today.
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(((HUGS))) Hope you feel better soon.
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Tell it.
Thanks you guys. You all really are the best.
I spoke with any number of people that I know in real life, from a variety of chronic illness groups. The consensus opinion, that I didnāt expect, was that you have to exercise caution when you enter online patient forumās because they can be super depressing. You go in, you grab what you need quick, and you get the hell outā¦like entering a coal mine that might flood with water at any moment. I was really surprised that opinion was so pervasive and emphatic. One guy described the online patient forums as āfilled with cripples,ā implying that people there tend to be particularly maladjusted to their illness, with low experience levels, lots of critical failure type problems, and depressionā¦deep despair.
I have never been on any other forum than this one. I find it helpful and have learned a lot here. But, I felt like fb is a different animal completely. I donāt think I get any helpful information there. I donāt think I ever get to hear any solutions to other peopleās problems that might help me learn the same way I do here. Emotions seem more explosive and problems more troubling. Whats been your experience with other patient forums?
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I look for a particular topic and may come across some helpful info. I find forums a place to get info not to connect.
I try to be caring and helpful and not judgmental.
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So, you would say, in general, that there are lots of helpful diabetes forums?
Like, I talk to a lot of people with different illnesses and they complain that there arenāt online forums where they can get valuable information. Thats bothersome because Iām a diabetic and I canāt answer their questions. But, I recall asking similar questions, myself, and getting answers from the diabetic patient community here that clarified a lot of stuff. When I went on FB, I finally understood their complaints.
Is there something unique about diabetes or diabetics or the nature of how our forums are build that allow for more in-depth problem solving? They have such reasonable questions (about the healthcare system and the nature of their illnesses). I actually referred someone here today because thereās no better place to send her. It was such a pity. She had such a complex healthcare question. You guys would know the answer.
Maybe you guys are just the best in the business. FB has to be the worst.
I always say that diabetics do tech better than any other illness group. Maybe good online forums are just a natural extension of that.
Maybe it has something to do with our access to resources.
Like, one of my friends is going blind. He complains about the forums for that. But, maybe people with vision impairment dont go online and post a bunch of resources about accessing employment because there are a limited number of resources available and those things are competitive and publicly announcing those resources may do you, as an individual, harm. Maybe we can act cooperatively because there are no insulin shortages. My access to insulin doesnāt decrease your access to insulin.
Its possible that fb resources for Loop are limited. Why donāt the FB Loopers come here, where there is unlimited access to gold star diabetics? Then, the Loop resources there wouldnāt be so overwhelmed and they could focus their efforts. There are a lot of problems over there and questions get asked again and again with no one answering them. Some of them need help with basal dosing. You guys could help them.
Iām inviting some of them over here. Heads up. We have solved so many problems. We might need more.
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If this place turns into a Facebook environment, it will not be good.
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@mohe0001, your concerns are well founded and your thoughts about how you may try to help some Loop users by inviting them to come to TuD are appreciated. But, itās not just that FB is a pretty messy and disorganized platform for support groups, it is also a matter of scale: the Looped group on FB now has more than 15,000 members, with tons of system-specific technical-support questions. This is in sharp contrast to forums such as TuD where far fewer people engage in more personal interactions on a wide range of D-related topics.
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I do agree with you that there seems to be something unique about diabetes (at least Type 1 diabetes). Maybe itās the intensity of daily management or the fact that our actions can affect outcomes a lot more than many other chronic illnesses.
I have found the severe food allergy community to be similar. Lots of information and resource sharing and support.
There are some good blindness groups out there. Usually they are divided up into pretty specific subjects. Blindness can be an enormous adjustment, though. It changes your world and can take a long time to adjust to, and often depression and feeling helpless are part of that process. Iām not sure I would agree that resources are finite and somehow used up. There is lots of cooperation, information and resource sharing, and support within the blindness community. But rehabilitation services are also vital because blindness involves re-learning so many daily skills. If your friend hasnāt contacted his state rehabilitation agency, I think that is the first step. Thatās where access to training, resources, support, and working towards ultimate goals such as re-entering the workforce would start.
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@mohe0001 I got rid of Facebook back in 2015, but before then was a member of a type 1 diabetic athletes group that was very informative, and pretty light hearted. I donāt actually consider myself an athlete, but I do work out a lot and studied neuromuscular science/have a general interest in the ways diabetes and exercise interact. I would definitely recommend that group if youāre looking for resources on Facebook! From what I recall the majority of things posted were about diabetes in general and not solely focused on exercise.
I am familiar with a few as I do not have time to spend on very many. I am not sure if there are lots. There is one I regularly check out called Medtronic 670G Support Group which one can access through Facebook. I find that to be very good. I have heard of another one that has to do with seniors and diabetes but have never checked it out. I think like anything one has to look around and see what they can find.
This is an old article but I found this info regarding diabetes forums.
Tudiabetes is an interesting case because the online participants here, tend to be in the top 1% of all diabetics in terms of control. Very much a self-selected group.
e.g. āFlatlinersā with amazing control (perhaps better than nondiabetics as shown on the CGMās) and T1ās with A1Cās less than 6% are considered perfectly normal here. Yet in the broad world of T1 diabetics those with control that good are so rare that I donāt think most doctors or CDEās have ever met anyone like this.
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Hi Jason. I am not sure who you are directing this comment to. Is it anyone in particular?
All SUPER helpful comments everybody. Thanks so much. You are rockstars.
You know where the term, āFlatliners,ā came from @Tim12? Its kinda funnyā¦There used to be some Trolling on here. When I was first on this group, there was one who used to follow me around pretty heavily and sorta hound me and attack me. I was having trouble with system variability and roller-coastering on one basal via MI, but I was scared of pumps (due to early bad experiences). I was doing nothing but taking data all day long, everyday. I would just sit on the computer and manage the system behavior because I felt horrible everyday and I was really āhanging by a thread.ā
So, I remember I was talking to Terry and the troll was all over me. Terry was talking out his super stable data and I had a diabetic meltdown. I just freaked out and kinda internet yelled at him and told him that flatline data was not always a indication of good health (referencing heart rhythms). I also suggested that maybe all the āold peopleā with stable data had liver damage. (which was a strike at the troll.) It was really bad. I have always felt bad about it. I āspazedā out. I think that within several days that they started the āflatlinersā club (which was a funny come back on their part).
This was mohe0001 on Tudiabetes: Lady Spaz out in Gas Station on wet KCKS pt2 - YouTube
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