Every time I go to a type 1 diabetes-related event, my heart breaks a little.
Not just because I have type 1 diabetes, which I am learning is a disease that breeds champions, but because I am consistently one of very few if not the only Asian person there. In Canada. In Toronto. A city that is touted for being one of the most multi-cultural places in the world.
In fact I’ve been hard-pressed to find a significant representation of any visible minorities during the events I’ve attended. Mind you, I haven’t been to a ton of these things, maybe 10, but for me it’s enough to know that when I go in the future, chances are, I stand alone. And, if I ever do get the chance to see another visible minority out there, I apologize in advance, but I’m going to want to befriend you very quickly and in all likelihood will try and hug you towards the end of whatever session we are attending.
I attended my first JDRF adult support group meeting last night, and I asked the entire group, “Do you know anyone who is Asian with type 1 diabetes?”
Silence. Then the JDRF rep piped up to say she did know Asian families with children who have type 1. Okay, so they are children and I’m an adult (I was diagnosed at 29). However, it was enough to give me a little boost.
Once the meeting was over, she came back to me and said, “Now that I think about it, the kids are mixed with one Asian parent.”
I can’t explain why but I was a disappointed when she said that. Let me be very clear, if I’m not seeing anyone out at support groups because I am really one of a very very small group of people who are Asian and have type 1, I am totally fine with that. But I really don’t think that is the case.
I’m not going to say that Chinese Canadians are the only group of people who, in general, don’t speak openly about illness. That would be very ignorant. There are a myriad of cultures and subcultures that hold beliefs which make speaking about illness in an open fashion a very difficult task.
Explaining to people you have type 1 diabetes is not easy. You need to mentally prepare for what it means to take this next step: the questions, the myths, people’s wild assumptions, clarifying stereotypes, the pity party you did not ask for, and the worst, that look and sigh, as if to say, “Sorry your life sucks”. For me this is an emotional and taxing process which requires a lot of strength, courage and sheer willpower.
I’ve done it before, so I know what it’s like. I waited a month before telling my parents. I did this in part because I wanted more of a concrete answer to what I had (they initially diagnosed me with type 2 diabetes), and in all honesty, I needed the time to mourn. And although in my heart of hearts I knew this wasn’t the case, I still felt I had let them down somehow. I felt I would be outcast, unwanted and unloved. And my parents are the most wonderfully supportive parents I know of. Yet I still felt this way. I still struggle with these thoughts all the time. I secretly cry about it still. I’m working on it.
I understand and sympathize as to why people believe it’s important to keep illness a secret. I must, because I’ve spent a good chunk of this past year trying to break my own head out of that belief system.
There’s no place in this entry to explain all the different types of belief systems that lead people to live with illness in silence. I’ll leave that up to you to decipher. And it’s by no means a finger point to any of the cultures that hold these beliefs either.
People who have diabetes or any kind of illness need support. I think it’s fair to say the greater the support, the better chance at a greater quality of life. How do you garner support when no one knows? One of the biggest reliefs I felt was when I met people who also had type 1 diabetes.
No one wants to feel alone. Loneliness is a dark and scary road. I don’t know about you, but I feel a lot better going to battle with an army of people beside me than carrying the load by myself. Knowing people rally behind me gives me strength to move forward and to tackle life’s challenges.
If you are out there, Chinese type 1 diabetics, or anyone living with an illness tucked neatly in your jacket pocket, please know you are not alone.
You are not alone.
Please feel free to e-mail me with 100% confidentiality at t1dactiveliving @ icloud.com (take out spaces).