“Where there is unity, there is always victory.” — Publilius Syrus
There is a discussion going around the community about a petition to change the name of Type 1 diabetes. I cannot do a better job than the others who have already written about this issue. You will find other blog posts detailing the merits and shortfalls of this sort of action. With regards to this issue, I can only share my own personal experience.
As a Type 2 diabetic I have felt embarrassed of my condition. I have felt anxiety and anger over what has been said to me, in person and online. I’m sad to say I’ve read many hateful posts on forums and other social media directed towards “my people”. The Type 2 diabetics. The stigmatized, the shamed. Many of these posts have been from Type 1s, or parents of children with Type 1 diabetes.
I can’t pretend, until I have children, to understand the turmoil it must bring to have a child diagnosed with a condition as involved, time consuming, and at times frightening as Type 1 diabetes. I can’t pretend to know the anger that comes when your innocent child has this constant burden thrust upon them. The frustration that comes when outsiders ask what happened, what did you do, to make this happen.
For that I am sorry and deeply sympathetic.
I can only give you my perspective. My own life since I was an 18 year old diagnosed with Type 2 diabetes. It is incredibly hurtful when people assume that this condition that you struggle to manage, and must live with every single moment of every single day is all your fault.
You should have eaten better. You should have lost weight. You should have done X, Y, and Z. YOU SHOULDN’T HAVE BROUGHT THIS UPON YOURSELF.
I have read posts from Type 1s on forums, saying how frustrating it is for them to deal with this stigma. This stigma that should only be reserved for us, the Type 2s. We are the perpetrators of our disease. They are the victims. Similar thoughts have been put forward from parents struggling with the ignorance of others.
No one deserves this stigma. Not even the overweight Type 2 struggling with self-care. Not the Type 1 child who is just trying to live their life. No one.
Whenever the idea of a name-change comes up I get a knee-jerk reaction. I am offended. I am hurt. I have done nothing wrong, why are they so embarrassed to be part of my community? This wasn’t my fault, why do I deserve these ignorant comments more than anyone else? I don’t think this latest petition is trying to insult or alienate the Type 2 community, but I cannot deny that I suspect some of those who signed it would like to see that happen.
I would like to share a short story about my boyfriend and myself.
We met in the fall of my sophomore year of college. I was fresh from a summer of learning how to manage my diabetes after being diagnosed in June. I felt alone. So, very, alone. Like I mentioned, I was so embarrassed. On some level I truly believed that I did something criminal. The second time I saw B he casually mentioned wanting a scone, and lamenting that he did not bring his insulin. I was so excited. I didn’t take insulin at the time, but I didn’t care, here was someone who had screwy blood sugars too! Immediately I told him I was just diagnosed Type 2 a few months prior. Together, B a Type 1, me a Type 2 we navigated the pitfalls of campus dining, our almost synchronized blood sugar testing before dinner dates, the long walks around campus, which were very romantic, but also functioned to help lower our blood sugars. We moved in together, built a stockpile of diabetes supplies. When it became apparent that I needed to start insulin therapy he was there for me, reminding me to take my Lantus at night, sharing his Humalog when I ran out. Together, we learned.
Pushing for a name change, at its heart, has divisive implications. But that’s a narrow view. It doesn’t matter what name we assign, the general public will hear the word diabetes and the same connotations will arise in their mind.
What matters is quality of life. For everyone with diabetes.
We need funding, we need attention, we need more research to better understand what is happening in our bodies. Only then will we be able to better educate the public.
Quality of life improves not only with better treatment options, more D-tech, but with camaraderie! A feeling of unity, and support. A feeling that you are not alone! We must stand united, because only together will we be victorious in assuring a great life for all of those with diabetes.
I hope you stand with me.
I wanted to edit this to add, the majority of people with Type 1 diabetes that I’ve met have been so completely welcoming and understanding. I love them all and have learned so much from them. It is a small, unfortunate minority that have expressed the negativity I describe above.