The Loneliness of Diabetes

**Language warning – this post contains some genuine words and thoughts about life with diabetes – don’t read if it offends you.

There are so many times where you feel alone when you have diabetes. It is something other people can sympathise about with you while they slam down a beer and eat the chocolate you bought for the whole family as a treat. While you sit there waiting, and longing, the chocolate screaming at you “SUCKED IN – YOU HAVE DIABETES BITCH SO BAD LUCK”. Not because you can’t have the chocolate. Of course you can, times have changed and those of us with diabetes are no longer banned from the sweet things in life. But because diabetes decided that right now you would have high blood glucose, and any attempt to eat any carbs at all right now would push you over the edge. So you wait, alone, while everyone else gets on with their evening, sniffling inside in the self pity of your diabetes.

While you may say how pissed off you are, and while your family may nod and make “poor you” noises, their face is happy while they eat the chocolate. They mutter “ok I will do it”, as you walk past the screaming cat and don’t open the door to let her in, because right now you don’t give a crap about anything else and are on your way to get pump supplies to change your site… While they have a chocolate stain on their chin….  This is not a situation of solidarity, of all for one and one for all. This is a situation of solitude. You must wait it out. Changing your pump site, taking more insulin, pricking your finger every 20 minutes to see if you can eat now…now….now….NOW?? Waiting to see if you can join the human race….

And then the crash begins as the new pump site starts to work and suddenly you are on the other side of the pendulum – needing to eat carbs – so you shove the chocolate and some other random carbs in to avoid a low, and don’t even enjoy it, and anyway by then everyone else is over the chocolate, they have moved on. You missed the moment and what is the point in eating chocolate alone? Well maybe there is a point to that, but the point of sharing something together as a family, you missed the boat on that.

This is just one small moment, one example of how lonely it can be to live with diabetes. A lot of what goes on happens in silence, the decision making process you go through every time you eat, the choices around exercise, the difficulties with technology or the changes in your levels due to hormones, or stress, or sickness, or just because it is  day ending in the letter “y” – and you think – WHY??? What the actual fuck?

But the only why you can come up with is that your pancreas is a dud. For some reason that is the thing you got dealt. Other people got dealt stuff too, some worse than this, but right now, the loneliness of diabetes is crippling. Much of what goes on with diabetes management is like a duck – it seems smooth on the surface but there is a hell of a lot of paddling going on underneath. Nobody else knows that, I mean truly knows that, unless they have diabetes. If you isolate yourself from other people with diabetes then you will have all of these moments alone. No matter how wonderful your family and friends are.

The best way to deal with it? Try really hard to come to terms with it in the moment. Human beings are essentially self centred and of course they are going to enjoy hogging down on their chocolate while you wait, in front of you. It’s nothing personal. They want the chocolate, they eat the chocolate. And of course you are going to be focussed on your diabetes problems, rather than skipping lightly along and laughing with them about the situation. But you need to get over it, so it doesn’t overshadow your life.

Get online, visit a diabetes facebook group, tweet #itmakessenseifyouhavediabetes, write in a journal, write a blog post. Share the moment with other people who feel just as lonely as you do with their diabetes and who get the crushing feeling of being alone in a room full of people. As they say a problem shared is a problem halved, well at least you feel a whole lot better when someone really understands you and perhaps they are also having a lonely moment with their diabetes and united we stand and all that.

And screw diabetes. Who died and made you boss anyway?

Helen

xx

 

2 Comments

  1. t1d_campaign on October 22, 2015 at 8:39 pm

    Very well written and exactly what T1D at times feels like. I couldn’t have put it better myself, you captured it perfectly. I really appreciate the resources and support that is given from this website. I just want to say a big thank you. I have started a small campaign to raise awareness for mental health in T1D. The more knowledge and acceptance that is available, together we can change and help others suffering. Thanks again. 

    Amelia xx 



    • Helen-Edwards on November 6, 2015 at 1:53 pm

      thanks for sharing Amelia