I was thinking the other day that if someone could just come up with a way to check blood glucose that does not require turning your fingers into blackened stubs, where multiple areas bleed when you squeeze for one blood test, and they could eliminate hypos, I would be ok with having diabetes.
There are many parts of it I dislike, but these are two of my most hated. In fact the hypos thing is probably the biggest fear for me. And that is the bottom line toughest part of life with diabetes when we break it all down isn’t it, the fear.
It is not that you have to eat healthy, be active, get your rest, plenty of sunshine, check your feet, visit more doctors than usual and reduce your stress. These are all good for you. It is not that you have to take medications or have multiple daily injections or lived attached to a machine, even though that is annoying and sometimes frustrating. It is not even the fact you have a chronic disease that can’t be cured. It is the cold hard fear.
It’s waking up in the morning with a high blood glucose level and having to decide whether to eat breakfast or wait, worrying about whether you are going to end up higher and feel like crap, or dive into a hypo from your correction dose of insulin, and feel like crap….It is sitting up late at night when everyone else is in bed, waiting to see if your levels are going to settle as they have been too high or too low. It’s managing the swings and ups and downs, often alone and not knowing when it will stop.
It is going out on a run, to the gym, dancing, drinking, on holidays, hiking, skiing, having sex, even a walk around the block – and not knowing if you might end up low or high. It is the fear of the unknown. And the fear of the known. The fear that gets drilled into you when you get diagnosed and reminded to you every time you look at a national diabetes week, or world diabetes day poster. It’s sleeping, waking, eating, fasting, sitting, standing, lying, existing – with FEAR.
It’s exhaustion. Which makes fear worse.
It’s all those things that can go wrong, break, stop working, fall off or be chopped off. It is blindness and dialysis and horrible feet. It’s not having babies, or having babies and then trying not to breathe the entire time you are pregnant in case it messes up your blood sugar and harms your precious baby.
It’s working hard in your career and your life dreams and not knowing if your diabetes will cause a problem you don’t want your colleagues to find out about. It’s failing exams because your levels were so high you couldn’t think straight. The stress of losing your license when your job is driving trucks. Losing your ability to make love. Losing your partner. Losing your grip.
Yes indeed, diabetes is a whole lot about fear and a whole lot less about the mechanics of it all, a whole lot less about the actual act of caring for your diabetes. People will tell you that you are “non compliant”, not managing well, not getting it. That is bullshit. You are probably scared. You are probably confused. You are probably exhausted.
Fear creeps up on you, takes hold of you, hangs around in dark corners, jumps out at you from under the bed.
Fear is a bitch.
And if someone could only take away that fear for me, I would be pretty ok with having diabetes, it is not the worst thing to have. The truth is, nobody is going to do that for you but YOU. If you are like me, and fear has a grip on your life with diabetes at times, the only way we can stand up to that fear is together, and alone.
We must take time to notice these fears, to pull them out from under the covers. We must take time to shine a light on them, share them – please don’t suffer fear in silence. Learn how to be more mindful, how to manage fears, how to be more centered, more peaceful. You don’t need to learn how to be more brave – people with diabetes are some of the bravest people I have ever had the pleasure of knowing – and trust me over 15 years working in diabetes I have known many thousands.
By sharing these fears we reduce them. We feel safer, as there is safety in numbers. Fear will always be part of life with diabetes. It is scary. But we can reduce how much it impacts on our daily lives by setting up networks of support, help when we need it, talking about it and facing it head on. And in those moments when you are scared shitless, just remember we are all here holding your hand. We have your back and you CAN do it.
What do you fear most about life with diabetes – please share and get these things out into the spotlight
Helen Edwards has lived with type 1 diabetes since 1979. She is Mum to 3 sons, the founder of Diabetes Counselling Online, a diabetes educator, social worker and PhD Candidate studying diabetes distress in pregnancy for women with type 1 diabetes. She is also a successful Interiors Blogger and Stylist at www.recycledinteriors.org and runs creative workshops, an online store and studio in Adelaide – just for a life outside of diabetes.