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Refining what I need

April 28, 2016 in DOC, Peer support, Real life | 3 comments

The DOC is a moveable feast. I thought about this the other night during the OzDOC tweetchat, when Frank directed us through a series of prompts about what the community offers us.

When I first dipped my toe into the world of DOC, I was cautious. What was this world and who were the people who populated it? As it turned out these were ‘my people’ in that they understood the daily challenges of living with diabetes. Most of the online discussion was diabetes and I lapped it up.

I jumped in – completely and unashamedly – a short time later, desperate to connect with as many people as possible and hear as many stories as possible. I participated in tweetchats every week, I read blogs and commented on them, and, if the opportunity presented itself, I met up with people that I only knew from a small avatar and their Twitter handle.

Before long, I had a huge network of new friends who were, in some ways, living parallel lives, faced the same challenges and frustrations and wanted to celebrate the same victories.

I’ve been part of this world now for a few years and have always been grateful for the support and love that I receive. After yesterday’s post, so many people reached out to check that I was okay, offer their support and even ask if there was something they could do.

But the way I interact does change at times. Sometimes, I am more diligent about participating and encouraging dialogue. Other times, I just put things out there and leave them, not really wanting to engage in discussion.

As much as the online world is wonderful, it can be overwhelming. A need to pay forward – and pay back – the love and support is compelling. I feel guilty when I don’t respond to comments on my blog, reply to tweets or answer Facebook messages or emails. But there are times that I simply cannot interact as much as I would like to. And that is okay.

I have come to realise that my online world is similar to my in real life world where I have started to consolidate the people I regularly see and hold near and dear. As I have gotten older, I have realised the importance of having a few really close and trusted friends rather than a huge number of more casual friends.

One of my best friends is on secondment in France at the moment and I feel a huge and sometimes aching gap because she is so far away, even though we message frequently and I bullied her into joining Instagram so I could see what she was up to. That’s the way it is when you tighten the network of people who know everything – losing one (even just for a few months; even in digital times) is very noticeable.

Sometimes, the two worlds (the online and the IRL) cross over. Some of my nearest friends – the ones I need like I need air – are DOC friends. We may have met on Twitter, but after a few, or even just a couple, of face-to-face catch ups, their friendships are invaluable. I cannot imagine a week where Annie and I are not messaging furiously, or Cherise doesn’t send me some random photo and a quirky comment, or Kerri doesn’t reply to a rant of mine with #RageRenza. Grumpy’s irreverent comments occur most days making me laugh, and Alecia’s messages make we want to start a countdown to the next time I’m in NYC so we can hang out together, drink orange flavoured drinks and take photos with shaggy-haired jazz musicians.

These women (and Grumps) are flung far and wide. We may have been connected by diabetes, but that is certainly not why I consider them friends. Diabetes was the catalyst, but I know that if that were the only commonality, the friendships would have fizzled out by now.

This exchange with the wonderful (and offline as much as online friend) Georgie explains it (with a complete lack of eloquence from me, of course)…

I realised the other night in the tweetchat that after throwing myself into the DOC, I have backed off a bit. I don’t join into every discussion as I once would have; I still read lots of blogs, but don’t comment much anymore; I don’t ask all that many questions anymore; I really only to the #OzDOC chat, and I sometimes go weeks without popping in to say hi. This may be temporary – it may be just where I am at the moment. But I am getting what I need. And I am lucky the community allows for that.

Guest post – The Party

October 27, 2015 in Diabetes, Guest post, Peer support, Real life, Social media | 2 comments

Over the weekend, my Facebook friend, Brad Slaight, shared a story that got me thinking. He summed up perfectly the power of connections and the value of speaking with others sharing our experiences.

I’ve not met Brad. We know each other only through social media. He is a funny guy – in fact pretty much all of his posts make me laugh out loud. You can read all about him, and the ‘Diabetes Hero Squad’ here.

I have read this piece several times and each time I am struck by just how the family in is story would have walked away from their encounter with Brad feeling relief, support, less isolated and less alone. It is how I feel whenever I connect with others living with diabetes.

Brad has kindly given me permission to publish his post here. Thanks, Brad!

I’m always interested in meeting another person with diabetes and after the secret handshake I enjoy listening to their story, their struggles, and their methods of control. Even with strangers it is always an immediate bonding because we are conjoined by a common life threatening, daily maintaining condition that cuts through the awkward veil of trust.

But tonight it was different. I went to a party at a beautiful home in the Pacific Palisades. An upscale community near the ocean with homes that in the Midwest would be expensive, but here in Los Angeles you have to be in the top 1% to own. This party was catered, valeted, and lavish.

I never feel out of place at these kinds of things even though my socio-economic status is not quite on the same level with the majority of the other guests. But since I am in the entertainment business I usually fit right in and can charm my way past any portfolio flaws. Money and power does not always mean personality. I’m pretty gregarious and make friends easily and tonight was no different. Flitting around from one group to another I came upon a stunning couple who looked like they just stepped from the pages of Forbes Magazine. Young Republicans I thought. Well groomed. Fashionable. Rich.
I planned on walking right past them because I saw nothing in common. And then, the woman grabbed my arm.

“You’re Brad, right?” She asked. A wave of paranoia came over me. What had I done? How did she know me? What did she want? I made some lame joke about not being Brad Pitt and she forced a laugh but I could see some unexpected pain in her eyes.

“I don’t mean to be forward,” she continued. (Forward? Who fucking talks like that, I thought to myself) “Shannon told me you have diabetes.”

Oh my God, I’ve been outed. As if I really care. But why was she asking me this? I would have preferred that she said something like, “You’re a comedian, right?” or “I recognize you from TV” or anything else that would be complimentary. I don’t mind people knowing I have diabetes, but it’s not really what I want to be known for?

The next thing that happened completely took me by surprise. She told me that their 7 year old son was diagnosed with Type 1 diabetes two weeks ago. This was the first time they had been out of the house at night since then. And they had to force themselves to come to the party even though they wanted to stay home and hover. Immediately they were one of us. Diabetes – the great unifier! They were in the club. I understood their pain and at that moment I also felt it because it hit me in the gut. Seven? Fuck. I was fortunate enough to get it when I was already an adult. Seven!

We talked for the next hour and a half. The rest of the party became an oblivious blur. They listened to me as if I were Yoda as I told them my story and stories of others who I have known from the D.O.C. They hungered for knowledge about diabetes. Where do they go? What do they do? Why did it happen to their precious boy? When will it be cured? How will he deal with this horrible disease? The same questions we all have had, and many that we still do.

I told them about the usual links and sites they should explore. The JDRF, the ADA, TuDiabetes, and others. But what they wanted to hear most was how I’ve survived for 30 years with diabetes. What do I do? How do I manage? Have I gotten any of the terrible complications they’ve been told about? And it was then that I realized how important all of the diabetes online community has been for me. How important it is to not feel so alone. So isolated. And how terrifying this disease is for those who are newly diagnosed and the people who love them, because it changes their life as well. I told them what I could but made sure to remind them that, even though we all share the same disease, we are all different and finding a good endo is key.

Most of all I told them how important it is that they were scared because that means their boy has great parents who will make sure he gets the best care possible. The fear will lead to knowledge, which will lead to the best kind of advocacy of all. And I told them that they need to seek out other parents who have CWD because they too need to understand they do not have to face this all by themselves.

Next week I am going to have dinner at their house and meet their little boy. I won’t tell him about all the technical stuff. In time, he will learn all that for himself, because he will have to. No, what I will talk to him about is that there are many of us. He is not alone. And I will give him an autographed picture of The Diabetes Hero Squad. I will tell him that he is a diabetes superhero. And I will make sure I don’t cry until after I leave.

I went to a party. I found out about another one of us. He’s seven.

We need to find a cure!

Knock knock

October 15, 2015 in Peer support, Social media | 3 comments

‘Hey love, it’s me…Renz…I’m just out grabbing a coffee, but when I get back, I’m popping in for some insulin. I’m out…long story. See you soon.’

These are the benefits to having a dear friend who just happens to have type 1 diabetes living two doors down. And that is the message I left on her phone the other night (although, because I speak so quickly, she misheard and thought I said I was out of tomato sauce and would be coming to get some – same/same.)

Why was I out of insulin? I thought I still had two bottles. I know I still had two bottles from my last prescription. Except I didn’t, because I left them in the fridge of our AirBnB apartment in Paris. Which I had realised over the weekend and I did order some from the pharmacy. I’ve just not quite made it to the pharmacy to pick up the prescription.

Sometimes having friends with diabetes is great for the practical ‘shit-I-just-ran-out-of-stuff’ reasons. But mostly it’s because of the ‘thanks-for-getting-it-and-not-judging-me’ reasons. Not once did my darling neighbour raise an eyebrow or shake her head or tsk tsk at my disorganisation. She didn’t tell me off or ask me why I wasn’t better prepared. She just went to her fridge, pulled out a vial and said ‘Is one enough?’

My friend Alanna (read her blog, ‘cause it’s fabulous and she is fabulous and I love her!) posted this on Facebook yesterday and it really resonated.

Changing the word ‘internet’ to ‘diabetes’ makes it so true. Most of my diabetes friends live so far away. I’m lucky that I get to see some of them at diabetes conferences, or when travelling for fun, but many I actually haven’t ever met IRL. They may as well be in Narnia or the Enchanted Wood or at Hogwarts! Thank goodness for every social media platform I use to keep in touch with them!

Which is why it’s so wonderful to be able to walk two doors down, knock on the door and have someone there, with matching pump tubing hanging out of our clothes, to save the day. Thanks, Jo.