On Being A Bad Patient & Seeing The Light


Healthy people need to take care of themselves to stay that way. It is so easy to go down the slippery slide of neglecting your health in our busy world. We live in a environment which discourages health – excessive amounts of food, sedentary lifestyles, too much to do, too many pressures, disconnectedness from each other and over connectedness to technology.

All of these things make life hard enough, but toss in a chronic disease and it triples these issues. I live with type 1 diabetes, have done so for 34 years.This means lots of medical appointments, about 15 – 20 blood glucose checks each day, wearing a continuous Insulin Pump, managing all the highs and lows and in betweens of type 1 diabetes, and a whole lot of stress. I also have some complications of this disease and a few other health conditions. Because of the difficult and frustrating nature of diabetes, people with diabetes live with twice the rate of depression and high levels of distress – that is why I started my diabetes charity.

Taking care of our health is so important. I think women tend to put themselves last and men tend to bury their head in the sand when it comes to health. May be stereotyping us all, but I have seen it in action, often.

So, I am a diabetes educator and a social worker and the founder and director of a national diabetes charity, supporting thousands of people each year, and today, I have a confession to make. I have cancelled my eye specialist appointment this year – SEVEN times……yep, “Bad patient”.

Diabetic eye disease (retinopathy) is one of the leading causes of blindness. It is vital to have annual check ups as found early, it can be treated. Yet here I am, cancelling all the damn appointments….

I don’t know what it is, well maybe I do actually. To start with, the specialist went and moved all the way across town. So to go there, sit in the waiting room for an hour, get drops (which dilate your eyes so he can look into the retina), sit in the waiting room for half an hour, get checked, pay the bills and drive home again, takes a good 3 hours out of my day, or more. Next, I hate the feeling of those drops. You can not see anything close up for ages and if you go shopping while you wait it out to drive home, people look at you like you are wildly drug affected due to your pupils the size of dinner plates. Next, I have been trotted out to this eye doctor, the same one, for 28 years people! Yes, 28 years, since leaving the children’s system…that is a long time.

Finally, I think that I get on with life and diabetes just is. It just sits there. It often annoys me, sometimes drives me crazy, sometimes makes me so mad I could scream, and occasionally, fades so far back into the background of my life, I forget it is there. I like those times. But going to “ologist” appointments – Endocrinologist, Ophthalmologist, Gastroenterologist, Neurologist, Rheumatologist – stop me in the busy flow of my life to slap me in the face and remind me – UM EXCUSE ME, YOU HAVE SOMETHING WRONG WITH YOU!!!….

The eye thing has been an ongoing problem for me this year. For the first time ever I even missed an appointment and did not ring to let them know. Yes I know, really bad patient. As a health care professional I know how much it sucks to be waiting for someone to turn up and they don’t, but I think given the hundreds of people in the waiting room there, he probably doesn’t even know I did not turn up. Don’t you? Or maybe I just told myself that.

So, yesterday was the 8th appointment time for the year. And I got up and dithered. All the reasons not to go kept chattering away, all the guilt kept nagging me, all of the other things I would far rather be doing kept tempting me. And then I thought – I do NOT want to go blind. I do NOT want to wake up one day and go “if only I had that check up they would have picked it up early and managed it”. I am such a visual person. Seeing is everything to me. I would probably rather have any other diabetic complication but not going blind.

So, I stopped and realised I need to do this. Yes it sucks, it is not enjoyable, it is a pain, but this thing that is hard and difficult and annoying and inconvenient – this is my health, my wellbeing, my eyesight.This is my life.

I do NOT want to be unable to see my children and my grandchildren. I do not want to miss the great joy of sunrise and sunset and clouds and flowers and art and oceans and faces.

Do you find that sometimes? Have you ever skipped appointments related to your health? Do you put yourself last? Or do you worry about what might go wrong and bury your head in the sand? One thing I know, I would rather keep track of my health and be proactive than end up with all the terrible complications they waved in my face as a kid. No way am I letting that happen.

So, I went. It sucked. It’s over. Until next time.

The funny thing, that 28 year part? That was cool. We reminisced about how long we have known each other. We talked about our mutual diabetes genes and weight loss. He has just run the City to Bay so we talked about running. We discussed our kids. He got excited about my work in diabetes growing larger, he got really excited about the fact that now, with all the technology and developments in eyes, he can pretty much fix every person who walks in his door with diabetic eye disease, as long as they come early.

He took me in to have pictures taken with his special machine so I could see how cool it was (he did say, oh and to check your macular but mostly to show you how cool it is!) and so I could share with all the people living with diabetes that I talk to every day. He wanted me to tell all of them and perhaps you are one, that going to have check ups on your eyes? It means he can fix us. And that is very very sweet.

I even came home with the pictures of my macular. 🙂 Seeing him again in 12 months. Hopefully I won’t miss the appointment next year – perhaps I have seen the light.
Stay Well



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  1. Sandra Kenny on October 2, 2013 at 9:07 am

    You’re so special Helen. What you do does make a difference to many many people. Glad you had the check up.
    I have to do this for other things it’s a pian but if we don’t the results are not worth not taking the time out of our day as it would be our life out of our day in the end. I know which I would rather. You are so inspiring, you are a person of giving more so than taking. Keep your appointments so we can keep you with us too.
    sincerly your
    Sandra Kenny x

    • Helen Edwards on October 2, 2013 at 12:17 pm

      Thank you for taking time to read and comment, you are a treasure and that is so lovely to hear, have a wonderful day 🙂 xx

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