Having worked on the interwebs now since 2001, a verrrry long time ago in the lifetime of the interwebs, but not that long ago in the lifetime of the world, I have seen a lot. A bit like the way the management of diabetes has changed so much since I was first diagnosed in 1979, I have also seen massive changes in the way we seek information, support and guidance in our lives with diabetes.
When I left my job and started my online diabetes counselling services in 2001, the main thing I knew was that people with diabetes needed MORE. We needed somebody to notice that we were more than dodgy pancreases, and that the burden of this disease can be enormous. I knew that it was lonely, complex, unrelenting and mean. I knew that people who don’t live with diabetes can never truly get it, which I am sure is the case for all conditions and situations. We can have extraordinary empathy but we can not walk in the shoes of another person. In fact, even when we have the same condition or experiences, we can never truly know what it is like to BE that human. However, we can most definitely support, connect and help each other, to have better lives. And when you have the same or similar experiences, then #itmakessenseifyouhavediabetes
A bit like inside jokes, or being part of a tribe (god I hate that word now the hipsters and paleo Pete took it over but hey it is a useful word here), when you know what it is like to prick your finger 20 times a day, deal with blunt finger prickers that you know you should change but can’t be arsed, inject or pump over and over and over, deal with dodgy sites from years of this, panic when you run out of insulin, or your battery starts to go in the pump and you are miles for home, or the chemist fails to get your insulin pump supplies in on time because they stupidly went and took away the distribution of these from Diabetes Australia, who used to post them to you at home within 24 hours and you could order online, or when you are hypo and in a public place or one of my personal worsts, hypo when you need to take a sit down on the toilet and you have to be in the loo feeling hypo, or when you are caring for your baby or child and have a hypo and leave them in the cot screaming while you panic and try to deal with the low. Yes all of those and many many more, can only be understood if you have diabetes.
I think that sometimes this also puts a wedge between people with diabetes because type 1 and type 2 diabetes are so very different, yet similar in some ways. People start to compare and judge and create conversations around who has the worst end of the stick. I personally feel we are all in it together and together we stand united and are far more powerful. My mum has type 2 diabetes and has worked with me in diabetes for over a decade. She is also the mum of a type 1 – that being me – and so she has the unique perspective of type 2, type 1 and a health care professional. That makes her a superpower when it comes to understanding how we are all different, yet we are all the same.
One of the issues with the interwebs and social media is that people can compare themselves with others far too much, and it an easy spiral into self loathing and depression. If you look at another person and see their latest holiday, their latest achievement, their perfect HbA1c and their latest CGM system with all the bells and buttons, you can start to think you are the worst person in the world, a terrible diabetic and worthless….this is not just in diabetes. Take a look at any successful Entrepreneur when you are an Entrepreneur like me, and it is easy to see “fail fail fail fail”. Take a look at any weight loss and fitness model’s page on Instagram or the latest darling of the styling world and see how everything is falling at their feet and it is easy to see “loser loser loser loser”.
You must stop this immediately!
It is so easy to do. Sometimes I think every instagram story I see is someone I probably don’t even really know, off on an overseas holiday destination, which has been paid for by a sponsor. Or that everyone I know is updating their house or buying a new one. Or that everyone is making 6 figures each week when I am lucky to make 3…..
All of this comparing needs to stop.
You need to decide what to let go and what to hold onto. What matters most to you? What do you want from life? What is holding you back and what is helping? Who do you want to be and how do you want to do this thing called life, because diabetes and all, you have a life, and it is uniquely yours.
I try to stay off social media during the day because as a blogger with 2 blogs and businesses, it could suck my entire day. I set time in the morning, at lunch and in the evening, but the rest of the day is down to business. I also set time for an hour’s walk in nature each day, no matter what, and time with the family. It is non negotiable and keeps me sane.
I still do plenty of comparing, I have not cracked this yet, but I do find that mindfulness and staying real, helps me to stay within my own life and my own reality. I have been through many changes in the past year or so, and we have had some difficult and stormy things to navigate in our lives, my health being one of them. Today at my gastroenterology appointment I was in tears explaining how my chronic gastroparesis is disabling and causing great anxiety to me as I can be trapped by the toilet for a few hours most mornings and suffer greatly on many days. He was shocked and said he has never seen me this way before as I am so positive. Well being a positive person does not mean that life is all la de dah! And we all need to express the difficult parts of our lives.
He came up with some options and ideas, one being to try the FODMAP diet, which I was sort of doing but not really, but will now do properly and will write about as I go. Another is a new drug which I am not keen on as it can make you groggy, but will look into. At the end of the day it is my choice.
In the waiting room sat his staff with an elderly woman and her daughter, drinking champagne. He explained to me she is not long for this world, and that they were celebrating and saying goodbye. It was very touching and a stark reminder that we never know what is coming and so, we must face each day with joy and opportunity.
It is a choice and we can make it every time we open our eyes. Choose well.