For many people, living with a chronic condition can be very isolating. It is difficult for those who do not have the disease to understand what it is like to live with it every day. Although diabetes is becoming increasingly prevalent, many people may not have close contact with another person that has diabetes (especially type 1), a person with whom they can share their experiences. People end up feeling alone in their struggles, their health suffers, and many people may become depressed.
That’s why social support is so important.
I know how incredibly lucky I am. From the minute I was diagnosed, I’ve never felt unsupported or isolated with having diabetes. Even though there is no one else in my family with type 1 diabetes, my family and friends have always been incredibly supportive and helpful. I’ve even been fortunate enough to have a very close friend who also has type 1 diabetes, as well as a handful of other friends over the years. While our friendship is so much deeper than just our shared medical condition, I know that I can always talk to her about the ups and downs of my diabetes and know that she completely understands.
My social support network consists of those people that are close to me, people I interact with regularly in person and some through the phone, email, or text messages. And for the past 12 years, I’ve been very content with this arrangement. It wasn’t until the past couple of months when I began my blog that I was introduced to a whole new world of social support, the diabetes online community (or the DOC as they call themselves). I truly had no idea how much I was missing out on.
Let me tell you a little about the DOC. Being new to it myself, I am constantly learning and discovering new things about it every day. The DOC is composed of bloggers, twitterers (tweeters?), facebook pages, forums, discussion boards, communities such as TuDiabetes and Diabetes Daily, websites like DiabetesMine and dLife filled with all different kinds of resources, youtube channels, diabetes advocacy, grassroot projects and initiatives, diabetes research, associations, and news sources, and even Pharma and medical companies. And this is only the tip of the iceberg!
The DOC is overwhelming in the amount of information and support that is available, but overwhelming in an amazing way. The DOC is welcoming. They are empathetic, understanding, and want to be helpful however they can. They communicate in forums and discussions, they tweet each other, they write supportive and encouraging comments on blogs, they reach out to those who are struggling, and they provide valuable insight and information from their own experiences. Whether you are an active participant or prefer reading from the sidelines, they are accepting and are there for you no matter what. They are strangers, yet they are instant friends. They understand you and what you’re going through, they’ve been there. They share an unbreakable bond. They are in the same city and they are across the world, but they are always ready and eager to talk. They share laughs and accomplishments, as well as tears, frustrations and struggles.
Intuitively, the benefits of the DOC are clear. It’s instant access to hundreds of thousands of other diabetics. But it’s about more than just access; it’s about support. There are four common functions of social support: emotional, instrumental, informational, and appraisal support. Emotional support includes expressions of empathy, caring, and reassurance. Instrumental support includes provisions of material aid such as financial assistance that directly benefits a person. Informational support includes the provision of relevant information and advice or guidance to help the individual cope. And finally, appraisal support involves information that is useful for self-evaluation purposes, such as constructive feedback, affirmation and social comparison.
In the DOC, you can find countless examples of all of these types of social support.
Emotional: The DOC is full of people expressing empathy, compassion, and reassurance to others about what they are going through. Here are some direct quotes taken from forums, discussion, and comments:
“I am so, so sorry to hear you are struggling so much, but of course you have a chance at regaining your happiness.”
“Hang in there! I have had some of those days and they indeed suck! Keep going at it!!”
“So many days, I laugh with you, and I cry with you. But even though some days are tough, thank you for sharing your story and reminding me that I’m not alone.”
“trust me. i feel like this sometimes, too!…diabetes does suck, but i thankful we have (the) tools we have to control it! vent all you want, we are always here to listen =)”
“I can only say how sorry I am and send you warm thoughts across the miles.”
“I am so sorry for you pain. Please know we are with you and will be always.”
Instrumental: In the DOC, instrumental support is often in the form of money raised for diabetes research or for diabetes related initiatives and projects as well as volunteer hours.
Informational: In the DOC, there is information on just about any topic you can think of. When I had a question about exercise and blood sugars, I posted a question in a forum and within minutes, I already had informative responses. Here are some other examples of PWD (people with diabetes) providing answers to questions based on their knowledge and experiences:
“The intensity of exercise certainly does vary the background level of glucose secreted. The advice I was given which works wonderfully was to have carbs + matching insulin 30 minutes prior to exercise. That way the glucose rise has some active insulin around to counter it, and when I finish exercise my BGL is perfect. Still have to watch out for hypos 2-3 hours later.”
“It could be that the cannula size doesn’t suit you. You could try using a different depth. It can have a big influence over the effectiveness of the infusion set.”
“When you try to figure out which factor is playing a role and therefore which one to adjust, it can be confusing and daunting. Keep a detailed log. Write everything down, at least for a week or two. It is a powerful tool that will make your efforts much more effective.”
“Do you keep your insulin in the refrigerator? If so that is one reason why you are getting air bubbles. Before you load the cartridge take the insulin out of the frig and let it warm up. Basically cold insulin leads to Champagne bubbles which after they regroup many hours later form several large bubbles that will affect your BG.”
Appraisal: Many of the comments that I’ve seen in the DOC include some sort of affirmation that the person has had a similar experience and that what happened is normal and they are not alone. People also recognize and acknowledge the accomplishments of others, no matter how big or small.
“I hope you know, we are all really proud of the progress you have made.”
“Wow, that’s a lot of stuff. I’m no longer feeling bad because I have to carry around a lot of crap in my pockets. You win.”
“You’ve made so much progress… focus on the positives. You are not a failure.”
“I relate to this so much… Thanks for posting this, it helps me feel less alone”
“Congratulations, that is such great news! You must be feeling very proud.”
So what does having all that support really mean? Having perceived social support can help people with diabetes (or any other condition) better cope with the demands placed on us. And as we know, managing diabetes can be quite demanding at times. The social support that people gain from the DOC is a coping strategy, it provides us with appropriate resources that we can use to meet the many challenges that arise while managing our type 1 diabetes. Whether it’s the reassurance that we are not alone in our experiences, or advice about new tapes, meters, or infusion sets, the DOC has so much to offer PWD. These coping strategies and social support can help to reduce the effects of stressful experiences. While I know that the DOC is not a substitute for professional medical advice, I am less stressed knowing that when I need guidance, someone to vent to, or just confirmation that what I am experiencing is not atypical, I can turn to the DOC.
There are very few aspects of having type 1 diabetes that I would ever wish on another person. However, having the unconditional support and understanding of an entire online community and knowing that they are always there to help when you need it, is something that I wish everyone could experience. I know I am not alone. I’ve always known it. But now I’m reminded of it every day when I check my twitter, when I read other PWD’s blogs, and when I see comments left by people I’ve never met on this blog. It is an incredible feeling to know that you are a part of such a welcoming and amazing community of strong and inspiring people.
If you have diabetes or you’re life has been touched by diabetes, I hope you take some time to introduce yourself to the DOC if you haven’t already, and if you don’t or it hasn’t, I hope that you too find a community in which you feel that you belong. Social support is a powerful thing, and we are lucky to live in a time where an entire supportive community is waiting right at the tips of our fingers.
So thank you, DOC, for all of your support!