The thing about diabetes

The thing about diabetes is that it is a hidden disease. Other people don’t know about it until you get out your blood machine and prick your finger. Or have an injection. Or they see your pump and ask if it is a pager. Or they happen across you all sweaty and wild eyed as you look for sugar in a hypo and they probably think you need insulin (blame all of those misinformed soapies on tv).

The thing about diabetes is that it is seen as a simple disease. When it is really one of the most complicated, complex, completely infuriating, crap and crazy diseases that ever affected a human being.

The thing about diabetes is that it lives by numbers. Yet 1 + 1 does NOT = 2.

The thing about diabetes is that it is not going away. The person trying to tell you how to manage it is not going to be the one making the call on the carbs in your pasta meal and how many units of insulin you need and whether it is low GI or not and how your gastroparesis is going to factor in, whether you are going to be exercising later, or if you may suddenly get sick, or your period. And then the whole damn insulin to carb ratio thing is out the window.

The thing about diabetes is that it is there. All the time. Looking at you. Laughing at you. Sitting on you. In your head. Under your bed. Just around the corner. On the horizon. In your reflection in every shop window you walk past in the street.

The thing about diabetes is that sometimes for a moment you forget about it. But if you forget about it for long enough, it gets you. And the guilt is enormous.

The thing about diabetes is that people will tell you it will not stop you from doing anything. But it does. It stops you being spontaneous. It stops you flying a passenger plane. It stops you being able to go for a run without the planning of a giant event. It stops you from being carefree about food. It stops you from being happy sometimes. It can take away your confidence and make you scared.

The thing about diabetes is that people will tell you it will stop you from doing things. But it doesn’t. Like having healthy babies. Living a long life. Being healthy. Running a marathon. Flying overseas. Backpacking. Camping. Walking the Kokoda Trail. Rock climbing. Playing sport with a pump. Keeping your legs intact. Having healthy kidneys, eyes and heart. Being happy.

The thing about diabetes is that it is just one small part of your life. Yet, it is also one huge part of your life.

The thing about diabetes is that it is lonely. Yet you meet all sorts of sweet, wonderful, crazy people who also live with diabetes. And then it is not lonely anymore.

The thing about diabetes is that it is not just about the person who has it. Family and friends also suffer. Worry. Feel pain. But they are often left out of things.

The thing about diabetes is that it is often just about the person who has it. Friends and family don’t get it. They get bored hearing about it after a while. “Oh my blood sugar is low” “Oh my blood sugar is high” “Oh my pump needs changing” “Oh that has soooo many carbs in it I am not sure what to bolus” – these do not make for stimulating discussion points after a while.

The thing about diabetes is that when you meet someone else with diabetes and say “Oh my blood sugar is low” – they don’t get bored. They get you.

And the thing about that, is that it is pretty sweet. And then, it is all ok. Life is ok. Despite a challenged pancreas.

And that is the thing about diabetes.

Helen Edwards

12 Comments

  1. Anneke on June 26, 2013 at 3:03 pm

    True words Helen

  2. Helen-Edwards on June 26, 2013 at 3:44 pm

    thank you Aneke πŸ™‚ glad you identified

  3. Sandra Williams on June 26, 2013 at 7:41 pm

    Helen, You have summed it up to a tee! The other thing I get is all the help from people – especially about the latest “cure” they have just seen on tele and how most people cannot differentiate between type 1 and type 2! Having type 1 is the hardest thing I have EVER done!

    • Helen-Edwards on June 26, 2013 at 8:43 pm

      That is so true! People need to understand more about all types of diabetes πŸ™‚

  4. Linda Turner on June 26, 2013 at 11:09 pm

    Helen, I greatly admire your work. I live free from diabetes yet recognise all you have said in your enlightening reality based piece .
    I hear it from my patients and my respect grows each time I hear their daily struggle. I feel humbled by the strength of character they show 365 days of the year every year no holiday or day off!
    Thank you.

    • Helen-Edwards on June 27, 2013 at 7:13 am

      Hi Linda thank you so much for your words, it is so important for people with diabetes to hear this from health care professionals and makes for a positive and beneficial relationship on both sides. I am sure the people you work with benefit from your insight, thanks for taking time to comment πŸ™‚

  5. Mel on June 27, 2013 at 1:07 pm

    Wow! This IS what it’s all about. Can I print this up and share it with the people in my world? I still doubt that they will “get it” but it sure couldn’t hurt to help open their eyes to my world.

    • Helen-Edwards on June 27, 2013 at 1:33 pm

      Of course! So glad you connected and took time to share, hoping it helps to get some understanding πŸ™‚

  6. Melissa on June 29, 2013 at 7:42 am

    Wow that is sooo true and definately sums up every thought and feeling this week it is so reassuring to know that someone gets us diabetics πŸ™‚

    • Helen-Edwards on June 29, 2013 at 8:44 am

      thank you Melissa, it is so nice to know we are not alone πŸ™‚ thank you for joining us!

  7. Sandra Neuhaus on July 11, 2013 at 8:59 am

    Fantastic blog post and SO spot on and heart felt:-) The absolute sweetest thing is having people like you and others on this forum (and fortunately for me in my family) who do really get it. YAY you…

    • Helen-Edwards on July 11, 2013 at 9:06 am

      thank you so much Sandra that is lovely feedback and exactly how we feel too, support and understanding make the journey so much easier πŸ™‚

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