What it’s like to be the only Chinese type 1 diabetic you know

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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.

Jessica

Please feel free to e-mail me with 100% confidentiality at t1dactiveliving @ icloud.com (take out spaces).

How do you deal with Halloween diabetes jokes?

It’s overwhelming.

Dealing with this disease day in and day out is downright exhausting at times. Today was a rough day in that the diabetes jokes just poured out through social media, and after a full morning at the hospital, it really hit a nerve.

On most days, I can let it roll off my back. I can shrug my shoulders and say “there are ignorant people everywhere” and that people make fun of everything. But today and on really emotional days, it’s tough. It’s the last thing I need to see or hear. And if you know anything about diabetes, it’s a disease that you must care for every day, every hour. There are no breaks.

I know people are miseducated. I know how easy it is to make diabetes jabs behind a screen. However this is what I want to say to all the people who made references to Halloween candy and diabetes:

“Today I spent my entire morning at the hospital. Do you like going to the hospital? I sat in a waiting room with some really sick people. Then sat again to get blood work done. I’ve done this so many times now, and it seems to never end.

It’s been a year and some since I’ve been diagnosed with type one diabetes and I can say without exaggeration that for me this time has been the toughest of my life.

Do you know the kind of guilt a parent goes through when their child is diagnosed with diabetes? Even though it’s not their fault at all? I wish you’d think of that when you write an ignorant comment about diabetes. Try to put yourself in the shoes of parents who have a newly diagnosed child with diabetes.  Then think about what it’s like for them to see jokes about Halloween, sugar, and diabetes. Then think about  a young child dealing with people making these jokes at them every Halloween.

It has nothing to do with eating too much sugar. And when people say sugar causes diabetes even in a joking way, it continues the cycle of uneducated people misinforming the public.

And I guess you can say, it’s all in lighthearted fun. But tell me if it’s funny if God forbid your child gets diagnosed. Or your family member or friend is in a diabetic coma.

Some diseases are just easy targets. But you should know there is no cure. I live with that reality every day. Show a little compassion. Because if ever there is a chance a disease you may have is the butt of jokes, I guarantee you won’t find it all that funny.”

Now that I’ve gotten that out. It’s time to focus on the positive.

Dealing with these jokes has been a blessing in disguise. Since being diagnosed I’ve become much more aware of what I say, and when I hear people have different diseases, I ask lots of questions, show compassion and ask how I can support them. If we all did that a little more I think the world would be a much better place.

Goodnight and let’s welcome Diabetes Awareness Month in about an hour!

Jessica