Mary Shi is a young woman in China with a mission to change her country’s attitude and support for people living with diabetes. She was diagnosed with type 1 herself in July 2003, while busy preparing for the entry exam for undergraduate studies. She has since become one of the International Diabetes Federation Young Leaders, and now studies Media and Communications at Peking University and teaches Chinese to students.
But it’s her advocacy that’s her passion. She’s involved with the UK-based diabetes exercise group Team Blood Glucose. And her latest project is translating Gary Scheiner’s book “Think Like a Pancreas” into Chinese!
A Guest Post by Mary Shi
I’m Mary, from Shanghai, China. I was diagnosed with type 1 diabetes at 18 years old. Ten years ago here, there were still few physicians who were aware that diabetes was a disease not entirely exclusive to the middle-aged and elderly. For many in China facing the same situation, death is unfortunately a common outcome for those who ignore the symptoms for fear of stigma or from receiving inadequate treatment.
Complaining of frequent exhaustion, an insatiable hunger and thirst, and dropping weight to a concerning low level, my family and friends credited my recent ailments to pressure from my university entrance exams. After a whole year of struggle, I eventually went to the hospital and my blood sugar test results came back at 30.6 mmol/L (551 mg/dl) — the most ridiculous thing is, I drank Coca-cola and ate ice cream before going to the test.
The medical staff were bewildered at my condition. The nurses came to me and asked, “You are so young, why do you have diabetes?” My father was also very distressed; he lost a lot of weight because he was sure I would die. Even my doctor said, “After five years you will be blind, after ten years you will have kidney disease.” I too fell into a depression because I thought I would die soon. So I ate what I wanted to eat, drank what I wanted to drink. I wanted to enjoy the little time I had remaining.
There is no one else with diabetes in my family. Both of my parents are very healthy, even my grandparents and my aunts and uncles. I don’t have siblings, because as you know, in our generation, we had to strictly obey the one-child policy in China.
At the beginning of being a type 1, I was totally lost. I didn’t understand why I got this weird condition. I was always lonely and it seemed there was nobody to talk to. My whole life had changed: now I had to take blood tests and insulin injections four times a day (once Lantus and three times Humalog before each meal). But that wasn’t the worst part. What upset me most at first was believing I had to keep a strict diabetic diet which would prohibit me from eating like a normal person: no sweets, no junk food, no drinks, etc. and I can’t exercise too much either. What’s more is that I had to get my temper under control and try not to get too stressed. I’ve been repeatedly reminded I should have a routine and superb healthy life style, like rising at 7 am, eating three low glycemic meals, etc. in order to stabilize my blood sugar. It seems I need to pay attention every second minute hour to balance my diet, action and temper which supposedly would be adjusted by themselves automatically.
After researching on the Internet and speaking to friends and family, I finally met a good doctor later who taught me that if I took insulin and monitored by blood sugar levels, I could lead a normal life. I needed advice from others to help me stay positive and learn how to live with diabetes. By connecting with the right doctor, I transformed my life and fully adapted a healthy and normal lifestyle.
Now, with smartphones in our pockets and social media platforms connecting strangers with like-minded interests, I can have easily access to life-saving information about a range of medical topics. Mobile technology, in particular, is helping people come together to form a community of trust and care.
Awareness in China is lacking the support from organizations and mainstream culture found in many Western countries, thus when most people are confronted with type 1 diabetes they are unfamiliar with the symptoms, treatment, and ability to lead a normal life through daily monitoring and minor changes to one’s diet. In addition, there is definitely discrimination towards people with type 1 diabetes. People think you’re a drug user when you’re taking insulin. I haven’t even told some of my close friends because I don’t think they would understand. I hid my disease for years. A lot of people in the rural parts of the country hide their disease, and refuse to seek treatment to avoid the discrimination.
China is one of the countries most affected by the diabetes epidemic but there is currently no formal organization for type 1 diabetes here. In fact, there is a huge lack of knowledge about the condition. Ever since I was nominated to take part in the Young Leaders Program, I have made it my mission to spread knowledge of type 1 diabetes in China. I took part in Type 1 Diabetes kick-off in Beijing in 2012, delivering speeches to eliminate discrimination and enhance education. I also joined the TeamBG, a UK organization formed by people with type 1, cycling from Brussels to Barcelona to raise awareness of diabetes last year.
I would like to achieve the first step in calling for much more support from the government health care system to improve type 1 diabetes care and reduce the medical burden. As noted, there are currently very little statistics or information available about diabetes care across China.
In July 2011, a project to look at this called “3C Study on Type 1 Diabetes in China” was launched in Beijing, and in December 2012 the results of this study were presented by the Chinese Diabetes Society (CDS). This study gathered data and information on the coverage, cost and care for people with type 1 diabetes in China. I was a spokesperson for this study, explaining to the public what it is like to live with diabetes in China and how the results of the 3C study can help improve the lives of people with diabetes in my country.
In July 2012, a second part of the project was launched, called “China Type 1 Diabetes.” For this project I also act as a spokesperson for the general public and media. This project has the following aims:
• improving the social awareness for diabetes;
• eliminating the social discrimination of people with diabetes;
• reducing the medicine burden for people with diabetes;
• improving the care for people with type 1 diabetes.
For the next step, I want to create a specialized organization for type 1 in China to spread knowledge, education and provide support, as well as create a platform for people living with diabetes to speak openly about their disease.
What’s Needed Most
In China, not too many type 1s wear a pump because pumps for most of us are not affordable. Pumps and supplies are not included in health insurance, so only people who really need it and can afford it have a pump, otherwise they do injections. For CGM, we only use it in hospital when we’re adapting our therapy or doing some intensive treatment.
Normal insulin like Lantus, Humalog etc. is covered by health insurance in China, but glucose meters and test strips are still not covered. Lots of type 1s don’t monitor their blood sugar very often, because the test strips are too expensive. I didn’t test my BG very often at the beginning due to the same reason.
I can get supplies like regular insulin easily. You have access to them in almost every public hospital in large cities. For the rural areas, it’s much more difficult to get what they need. They receive inadequate treatment.
I frequently see an endocrinologist. We don’t have diabetes educators in China. I heard the Chinese Diabetes Society (CDS) wants to build a new institution for diabetes education. Now we have some examinations to get certification of diabetes educators, but it’s still on the way, not a mature system yet.
Since we don’t have diabetes educators and we don’t have a specialized institution for type 1s, most of us struggle with our diabetes alone. Endocrinologists can only tell us how much insulin to take, and nurses can only say how you should combine your diet and sport together to control blood sugar. But how to get some tips in daily life? How to get some peer support to make you become stronger? How to build an optimistic attitude towards this condition? This is what I want to do now, building a platform for type 1s. Not only getting diabetes education but also making type 1s together.
I hope the people with type 1 diabetes in China can get together to be able to fight discrimination and to not feel constricted by a long-term health condition. They should have confidence to manage their diabetes in order to lead healthy and happy lives. Together we will be stronger!
How do you say “Amen” in Chinese?! Great work you’re doing, Mary! And thank you for sharing your story here.