Vital Distinction or Type Shaming? T1 vs T2 Diabetes

Melinda Seed writes for Twice Diabetes
Melinda Seed writes for Twice Diabetes

I have witnessed some heated discussions lately on social media about the differences between type 1 and type 2 diabetes.  Unkind comments from unempathetic type 1 diabetics about type 2 diabetes being avoidable are unnecessary and often inaccurate.  These comments have been around for some time and are, in my opinion misguided because they attack the victims instead of the perpetrators of the blaming and shaming of diabetics.

I have also seen a rise in people with type 2 diabetes accusing type 1s of stigmatising type 2 and excluding them from support activities. The terminology “type-shaming” is something I have heard bandied around. Again I believe these accusations are, also generally  misguided and a misdirection of anger. Type 1s don’t write newspaper articles about “diabesity” or pay for campaigns telling people to lose weight or exercise to avoid diabetes.

We are as disgusted by the lack of nuance, the oversimplification and the blaming as you are. My post on diabetes advocacy  I know exactly how it feels, the same thing happens to anyone with diabetes who suffers complications even after many decades of battling with this damn disease. The blame and recriminations certainly don’t make living with diabetes easier and add to the psychosocial distress and depression that is common amongst people with all types of diabetes.

I stand against stigma and blame.

I do however, strongly believe that the distinction between type 1 and type 2 diabetes needs to be made clear and that this can be achieved without denigrating people with other forms of diabetes. The differences in type of diabetes need to be clear because:

Type 1s will die without insulin. If we are confused with type 2, as we often are it can have deadly consequences.   Type 2s generally don’t need insulin if they are fasting and will not die for lack of exogenous insulin. We however, do and many health care professionals let alone the general public don’t realise this. I’ve heard many, many stories of serious health consequences as a result of type 1s being treated as type 2s.

There is often a significant (and life-threatening) delay between the onset of symptoms of type 1 diabetes and an accurate diagnosis. This is because both the general public and GPs are very well educated about “diabetes” risk factors and the non-urgent nature of a type 2 diagnosis without realising these factors don’t apply to type 1. So when a young, lean, caucasian person presents to a GP with fatigue, blurred vision and reported thirst they’re likely to be tested for Glandular fever (mono) or something other than diabetes because they don’t fit the risk profile for [type 2] diabetes. That is annoying because they are showing all the symptoms of type 1 diabetes but this is ignored because of confusion between diabetes types.

As a minority group, our needs for peer support can’t be met through generic “diabetes” support. I have been quite frustrated by well-meaning type 2s trying to be supportive in a discussion about exercise or weight loss but they just don’t understand what hypos or heaven forbid, dka are like or the fine line that is insulin dependence combined with insulin sensitivity. It’s not their fault, it’s just that our conditions are different. Unless it is specified that a group is for type 1s, the greater population of type 2s will dominate and type 1’s needs will get lost. All the t1 support groups of which I’m aware have been initiated by type 1s for type 1s so it’s a self-help thing that can easily be replicated if other groups wish to do so.

This brings me to my final point. Many type 1s have fought long and hard in the battle to promote understanding of our disease, it’s not fair to claim we are discriminating against type 2s simply because we advocate for ourselves.  We were blamed and shamed by the diabetes messages too, but we took a stand and lobbied our supposed representative organisations and the mainstream media. Diabetics were denied pump funding but again, despite the deafening silence on pumps from Diabetes Australia at the time, type 1 groups like JDRF and the Type 1 Diabetes Network mobilised their members to advocate for subsidised supplies. I don’t say this to pat type 1s on the back or claim that we are superior in any way but to show that actions by individuals and small groups can make a difference and you’ve got to be part of the change you want to see. if you don’t like the stigma around type 2, perhaps the place to start is lobbying the supposedly member-based organisations that promote these messages.

There are many things that people with “diabetes” have in common but some important differences too. Making sure the differences are understood is life-saving for type 1s and does not demean or belittle the very real needs of people with type 2, or the seriousness of type 2 diabetes.  There are many opportunities for mutual support and co-operation in making things better for everyone affected by diabetes but type 1 is different from type 2 and it is neither discriminatory nor shaming to point this out.

What do you think? Is the distinction necessary or discriminatory? Could it be done better or do you have ideas for how diabetics can speak with a more unified voice? Please feel free to comment.

11 thoughts on “Vital Distinction or Type Shaming? T1 vs T2 Diabetes

  1. Hi Melinda,

    I love this honest post about what is happening within the diabetes community.

    I admit, I have been frustrated in the past about trying to join a type 1 support group as a young adult with type 2, on MDI but being rejected. In my mind I see no difference in the way we are medically treated. I still experience hypos, hypers, the wild BG rollercoaster ride and the general frustration of the unpredictability of diabetes (however, no DKA to date thankfully). Yet after explaining this to several groups, I’ve still been rejected.

    Speaking with other PWDs with type 2, I understand why there are few support groups for young adults with type 2 around. There’s not that many of us out there firstly. Secondly, people are ashamed of speaking up as a young person with type 2 because they have been put down and bullied in general diabetes forums.

    There seems to be a lack of understanding of both type of diabetes from both sides.

    I understand that type 1 and type 2 have different needs and require different support. I dream of more support groups around that are similar to the DOC on the twittersphere who welcomes diabetes of any sort. Being part of the DOC has given me a new perspective and understanding of type 1 and type 2 across the ages and specific challenges different groups face. I find Facebook groups to be a lot more exclusive in who they choose to let into their group. If we’re always having exclusive parties, how do we expect outsiders to understand what we go through?

    Cheers,
    Ashley

    1. Thanks for your comments Ashley. I am sorry that you or anybody else has been bullied or belittled in diabetes forums. I too enjoy participating in the DOC and have learnt a lot about type 2 and other medical conditions and health economics and politics from Twitter. I think the private parties is a good point but I see the need for awareness raising and understanding “the other” as different from the peer support provided on Fbook or even the old PHB discussion forums. For me the ability to understand and be understood by people who share my condition, who can laugh and cry with me is priceless and I’m quite protective of maintaining a space that allows for that. In a similar way I really hope that you can find the same space within the young people with type 2 sphere. From that base, it would be great for us to look for common ground to work on things like awareness raising and matters that affect us all. Looking forward to seeing you again at Ozdoc chats and on twitter and I sincerely hope that support for young people with type 2 is forthcoming, maybe you could establish your own Fbook group, there must be quite a few young pw t2 d internationally.

      Best regards

      Melinda

  2. Well said Melinda. Yes, absolutely, there need to be a distinction between Type 1 and Type 2. Perhaps with the name. Type 1 only should be called Diabetes and a completely different name for Type 2. I particularly like your point about the complications that come with long-term Type 1 and hate the shame placed on long-timers such as, ‘you should have looked after yourself better when you were younger”.

    1. Thanks Jennie. The shame associated with complications really saddens me. I was fortunate when I had a nasty run-in with retinopathy that my physicians were wonderfully supportive but the messages you see around about “only uncontrolled diabetes causes complications” and some of the comments from pwd are incredibly judgemental. It’s so sad when you’re going through a stressful enough time as it is. I was reminded of this just the other day when a type 1 contacted me via social media, she said even though she had good control she felt the retinopathy she was having treatment for was her fault and she believed others thought so too. It’s outrageous that we should be made to feel like that. If you got a pen knife and removed your pancreas then any diabetes complications are your fault. If you didn’t then it’s not your fault, we need to reassure ourselves and others of this.

  3. I actually think that there is enough difference between the various forms of diabetes that it is time to abandon the term entirely and adopt new nomenclature. The Greek term that we brandy about with out thinking much about translates to English as ‘excessive urine that is sweet’. Since we have a much better understanding of the pathophysiologic mechanism I think we need a better set of names to call the many aspects of this disease.
    Type 1 diabetics have an absolute deficit in the production of insulin so we should have a name for the disease formally know as diabetes of something like aninsulinemia or lack of insulin in the blood.
    The different mechanisms that we lump together into the type 2 label should each get their own name. Relative insulin production deficit, intrinsic insulin resistance, and hormonal mediated insulin resistance should each have their own label since the treatment for them require different approaches.
    I am really starting to feel that labeling a person as a diabetic of what ever type ends up being a disservice to the patient. Because the treatments recommended often do not take into account the varied underlying causes. By doing this we can shift some of this problem away for squabbling over who supports whom, to how do we live with this better.

    1. Thanks for your comments John. I agree, the lumping together of quite different diseases can have a detrimental effect. I believe it would be helpful if the focus was on the underlying causes and that was a guide to treatment. The umbrella term “diabetes” is just not specific enough to convey sufficient information and type1/type 2 is as you too general for t2 and there is poor understanding of the meaning of the different types anyway. It’s scary that so many Drs and other health care professionals don’t know the difference.

      The Greek term belongs back in the day when medicine was little more than a description of symptoms, with better understanding and treatments available it might indeed be time to abandon the ancient nomenclature.

  4. I think we just need to get a grip here and not take this all so seriously…it’s all so semantic. and counter productive anyway…

    If Type 2s are being shut out of groups, then start another group! If Type 1s are being negative to Type 2s, then don’t read it. (I am a Type 1 and I have had to feel “shut out” for the past 38 years because the Media, Australian Diabetes Council and the IDF keep telling me that I can “prevent” diabetes. And that I can “avoid diseases like “diabetes” by “losing weight and eating better foods”. And we all know that this simply isn’t true for Type 1. Type 1 diabetes is an auto-immune disease and cannot be “prevented”. So, I have had to stop reading and listening these articles.

    And, anyway, isn’t social media all about freedom to write a point of view. (Derogatory comments of course are not welcome)

    However, the facts remain, Type 1 is an auto-immune disease, and Type 2 is often genetic and often caused by obesity. Quite different. Very confusing for the general public. And will a cure for Type 1 be less urgent if people think that “diabetes” can be “prevented”? The recent World Diabetes Congress was all about “prevention”. A small point but a poignant one.

    It is the IDFs (International Diabetes Federation) media releases, and the sheer numbers of Type 2 diabetes worldwide, that cause the media to speak about Type 2 diabetes, but talk about it and refer to it under the same umbrella of “diabetes” in general.

    Governments worldwide will save money by encouraging people who are obese to lose weight and therefore “prevent” diabetes”. This is great, (but not so great for Type 1 as the urgency for a cure is somewhat bypassed for this pandemic of Type 2 occurences worldwide)!

    In my opinion, (apart from changing the name), ALL that needs to be done, is to get the media and the organisations to preface which “type” they are talking about before they mention “diabetes”. That should end the confusion, and the hurt! And perhaps end up talking about finding a cure instead!!! For BOTH types!

    Also, I haven’t really witnessed any “Type Shaming” myself…. and think by writing about it , we are perpetuating it… and perhaps by writing about it, we bought it into existence?

    A few well worded and justified prompts at the media re: The differences between Type 1 and Type 2 do not require a term “Type shaming” to be created.

    Sometimes simply stating the facts might sound like it’s blaming people but it is simply a fact. Type 1 is an auto-immune disease and Type 2 is often caused by genetics and/or obesity! Fact. Why don’t we focus on finding a “cure” instead?

  5. Hi Gina,

    Thanks for taking the time to share your views. I, and I suspect most of the type 1 community largely concur with your points.

    I do, however, disagree with your point that writing about “type shaming” brings it into existence or perpetuates it. I believe the type 1 community has to face down this very real accusation in a positive way, pointing out, the difference between “shaming” versus helpful and necessary distinguishing between different diseases.

    You and I remember the days when adults with type 1 were ignored, treated as though we didn’t exist, as though “juvenile onset” diabetics just became type 2s when they turned 18. Thanks to the advocacy and hard work of the type 1 community, this has changed to such an extent that I see the real risk of us becoming the victims of our own success. I have heard increasing murmurings about type 1s being “advantaged” and over-represented. I find this frustrating because we’ve worked so hard to be heard and to help ourselves…but that’s another whole blog post on its own.

    This was illustrated recently by an Australian study published in BMJ http://bmjopen.bmj.com/content/3/11/e003384.full

    “It was also perceived that people with T1DM received more support and assistance than people with T2DM, which results in a division between these two groups.

    But they’re [people with type 1 diabetes] generally quite looked after. They have access to pumps, they have heaps of support groups out there and workshops…if I tried to get into the same type of thing because I’m on insulin they say “no, because you’re type 2” so they automatically exclude you just because of your diagnosis and not because of the way you’re managing your diabetes. So that segregates the diabetes community as a whole. (#20, woman, 22 years) ”

    In a more subtle way, the ADA’s influential Kelly Rawlings'(whose work I generally admire very much) comment on this blog (http://twicediabetes.com/i-am-diabetic-hear-me-roar-tips-on-advocacy-on-wdd2013/#comments) implies that differentiation undermines support and advocacy, “When “my diabetes” becomes “our diabetes,” it’s easier to gain the knowledge and strength to do all that we can to take good care of ourselves—and each other.” The implication being that differentiation undermines support. As an aside, you might be interested also in her assertion in that comment that the prevention message includes prevention of complications “for which people with all types of diabetes are at risk”. This interpretation, (that I reject btw) has significant implications for stigma in relation to complications but also for funding for cure research.

    So, it’s my view we need to examine these notions of segregation and accusations of type-shaming so that the baby doesn’t get thrown out with the bath water and type 1 ends up back where it was 30 years ago.

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