Saying It Out Loud

There are usually a few things in life that soothe and nurture you instantly. For me, this includes a cup of tea (any kind of tea), chocolate, flowers, walking in nature, especially in and around trees, or by the sea, and a good natter and cuddle with someone I love. Another big thing that helps to ease the difficulties of life, is to connect with people who understand your struggles. On our Diabetes Hub Friday chat topic  on our Facebook page recently I asked people to share their biggest frustration with diabetes. I also asked people to introduce themselves on a different post and the experiences were similar. The post went off, with people sharing all sorts of things from frustration about what they felt they could or couldn’t eat, to the costs of diabetes, to living with complications, wishing they had taken better care of themselves and worrying about the future. The 2 biggest messages that came through from many were a sense of being alone, feeling like people did not understand, and dealing with it themselves.

A number of people commented that just through sharing these thoughts, they felt less alone. Saying it out loud matters. Whether that be in person, on the phone or online. It may seem small, but sharing with someone who understands your experiences, can be the key that helps you to feel easier, better, less alone. It shows the ways we are different and the ways we are the same. It puts thing into perspective and helps you find more balance. Another person’s experiences can help you to make sense of your own and their words of support can mean everything.

Here is a sample of what people said about their biggest frustration in life with diabetes- do you connect with any?:

Grocery shopping and checking nutrition panels for sugar, carbs, fibre, GI…can be a tad confusing.

Having to find somewhere I can do my insulin injection when I’m out and those awful lows.

Probably the most frustrating thing for me is the cost of managing type 1 diabetes. I believe that in Australia, children diagnosed with diabetes should be provided with a Health Care card for life.

Going to get test strips to find out you need to get a new six month form done – more GP visits more money.

Wishing that I had done something about it when I was younger.

Being accused of doing the wrong thing when eating low carb even though my levels are the best they’ve been in years eating this way. Sometimes you need to trust your gut.

Lack of sleep….. impacts the whole family’s wellbeing.

Was diagnosed with Type 2 middle of last year and battling depression as well as information overload.

Most frustrating thing – The whole numbers game. And the fact that the technology is out there for pump therapy and the continuous glucose testing device, but is totally unaffordable unless you are under 21 in Australia.

Being micro-analysed by family with what you eat. And taking insulin in public.

Friends and family not understanding the seriousness of it. The attitude of ‘its ok to have this…….a huge slice of chocolate cake)…….. it won’t kill you’ when you try to explain things to them, and they think you are exaggerating or lying.

Be so exhausted from thinking about my sugar levels all the time (literally every 5 minutes of the day) while trying to work full time, being a mum and trying to stay healthy. After 30 years I am finding it harder.

One word… “Balance”. Trying to maintain it with food, insulin, exercise, moods and general health.

I have had enough of all the crap that goes along with having diabetes! Not doing it anymore!

There is never a holiday from diabetes; we have to think about it everyday.

Diabetes does suck but I keep saying to myself that at least it can be contained. It’s up to me to keep it that way and it is a chore but it is doable. It’s good to hear how people cope with everything and that we aren’t alone in dealing with it. Keep your heads up guys you are all doing great. But it still sucks……….

That last comment really summed it up to me – diabetes does suck. It is not something you asked for, wanted or enjoy living with. But it is a condition you have the tools to manage, even if you can not afford the latest technology, there are still good options for managing. Even if people don’t understand, there is literally nobody in your life, you feel like there is never a break, you are riding a rollercoaster, your health care team don’t get it, or you feel like giving up on it all – you can get the tools you need to manage (even if they are imperfect) and you are not alone. You can always reach out, any time of the day and night, and there is another person with diabetes who can say “I hear you, and you are not alone”.

We know that peer support, support from other people who are dealing with and living with similar things to you, is important in many situations. In particular, when you live with something like diabetes, it is often other people with diabetes who you turn to for advice. People discuss their management options, impact of medications, experiences of hypos, dealing with complications, how they are getting along with their family, diabetes burn out and mental health. In other people with diabetes, you find a shared experience. Sometimes there can be damaging experiences in these communities as well. Like everything, not everyone is good at giving non-judgemental support. Sometimes people give information or advice that is questionable. Be sure to protect yourself and step away from any negative conversations – you will know if something is not working for you. In the majority of cases, you will find welcoming arms to help you in living life with diabetes, so reach out.

Keeping things to yourself is never healthy. Thoughts and worries build up inside you and fester. They can take over your head and lead you into behaviours that you don’t really like, or want. I have been on both sides of the counselling chair, and can say 100% that talking to a professional is also very important when you are struggling. Talking with someone you love and trust is also incredibly helpful and helps you to feel less alone. Talking with another person who has walked a similar path, is often the key thing that changes your life.

Saying it out loud matters. It might very well be the one thing that makes all the difference to you in living life well with diabetes.

getting support in diabetes is very important and the diabetes online community is here to help you in managing every day life with diabetes

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Please come join our Facebook community page here – we will be running regular Friday chat topics, as well as sharing all sorts during the week – *remember this is our public page

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Say it out loud!

xx

Helen

2 Comments

  1. Rick Phillips on June 18, 2018 at 10:44 am

    On a separate board, we say Diabetes should never be done alone. Anything we can do to make it less lonely is a win for us all, the community, the person involved and their families.

    • Helen-Edwards on June 19, 2018 at 9:56 am

      all the way – never do it alone

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