Ten years and not sure what to say – By Helen May


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I remember the date well: 20th January 2004. The day I was diagnosed with type 1 diabetes. Since then I have learnt a lot about the condition and given myself nearly 20,000 injections. But those needle pricks have not helped me tell other people. It’s not that I am ashamed or that I don’t want other people to know (although I would rather they didn’t think of me as “the woman with diabetes”). I just don’t know what to say.

To say “I was diagnosed with Type 1 diabetes” describes something that happened ten years ago and does describe the condition today. To say “I have diabetes” sounds a like ownership; like “I have a car”. The media often describes people as “suffering from diabetes”. This is the description that annoys me most.

According to the dictionary, the definition of “suffer” is “to undergo, be subjected to or endure (pain, distress, injury, loss, or anything unpleasant)”. Unless you count the bruises from injections, I have not suffered pain from diabetes. Apart from the initial shock of the diagnoses, I have not suffered distress due to diabetes. I definitely do not consider diabetes as an injury. I have not lost a thing or an opportunity due to diabetes. And, to be honest, on an unpleasantness scale, diabetes does not rate as high as breaking a leg or putting my hand in a bowl of tripe or eating Brussels sprouts.

Some may say that I am lucky with my diabetes because has not stopped me doing anything: I climb mountains, travel around the world and have a career. In nearly ten years of having diabetes, I can count on one hand the number of days I have had off work due to the after-effects of a night time hypo.

I know some children miss out on activities because of their diabetes. And adults may be sidelined for a promotion. But I don’t think of that as suffering from diabetes: it’s suffering from ignorance of diabetes. And using the using the phrase “suffer from diabetes” adds to this ignorance. When someone hears about diabetes they expect some sort of pain, distress, injury, loss… This someone may be the employer of someone with diabetes or it may be the person who has just been diagnosed with diabetes.

My personal experience of the diagnosis was scary. But, in hindsight, the most scary thing was the unknown: my own ignorance of diabetes. As I have discovered more… as I discovered I don’t have to make major changes to my life and by taking control of diabetes, I can reduce the odds of getting complications … diabetes became less scary. I still worry about these complications but they do not dominate my thoughts. I do not “suffer” from these worries.

So, to celebrate my 10 year diagnosis, I would like to ask the media to stop describing celebrities, such as Theresa May and Tom Hanks, who have recently been diagnosed as “suffering” from diabetes. I think, “suffering” should be reserved for the victims of natural disasters or war or severe hunger. The media have a major role in educating the expanding society of people who know someone with diabetes and people who are diagnosed in the future.

I don’t want to underestimate the difficulties other people have experienced through diabetes but, after ten years, I have settled on “I have diabetes”. It may not be ideal but it’s not too positive and it’s not overly negative, And, whilst I would rather not have diabetes, at least by focusing on the ownership, it reminds me I am in control.

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8 Comments

  1. Eiri says

    Hia

    Lovely to read your blog and an insight into your life over the last 10 years. To suffer form diabetes does suggest the things you mention but after a disabling hypo in work 4 years ago living with T1 diabetes changed drastically for me. I would have agreed with your blog completely before this happened but I’m not ashamed to say that I have suffered with this chronic illness since then as everything is unpredictable, my confidence has been dented and my day to day fear of hypos is very real.

    It is different for anyone and, whilst I don’t like the word suffer either, I think that to underestimate the effort and work involved in controlling diabetes on a day to day basis 24/7 should not be underestimated.

  2. Kevin Geddes says

    Great post – 17th February 1993 for me, and I have never felt like I suffer either, really dislike the term. I ‘live well with diabetes’ and agree its hard to discuss with people without them thinking ‘poor soul is suffering’ and focusing on things maybe they think I miss out on. I don’t miss out on anything! Thanks for sharing, and keep going!

  3. Chris Linacre says

    An interesting read Helen – I too happen to have Diabetes and I don’t let it define me. I too have concerns of the consequences of complications associated with it I do all I can to avoid this by following the advice offered to us all. I was lucky to have an excellent nurse to guide me through the early stages of diagnosis. I was however rather sadenned today at my annual review where the nurse at my new GP practice spent more time ticking boxes on her PC as she directed questions at me – such a difference to my earlier experiences- and I am unclear how effective any review can be before the results of the blood testes are in- she did the blood test as part of the review !

  4. Rachel says

    I am very pleased that your diabetes does not cause you to suffer, you are very lucky.

    My husband who has been a type 1 for 30+ years suffers every single day of his life, he has many complications, including unstable blood sugars and has terrible constant pain that is caused by Neuropathy. His Diabetic doctors are doing all they can for him and we both try so hard and follow all the rules but still the suffering continues, it breaks my heart to see him so ill everyday.

    The reason for my reply to your blog is the lack of understanding some people have about what a terrible illness Diabetes is and just how life threating it can be. The other day for example my husband was having a hypo at work his staff just walked away, didn’t think to help him even though he told them what was happening, luckily he was able to sort it out himself. I have lost count of the amount of jobs my husband has lost over the past 30 years due to being Diabetic. It really upsets us when we hear people saying Diabetes is no worse than breaking your leg, I’m sure my husband would rather be in plaster for 6 weeks than have one more day with Diabetes. When my husband tells people about some of the terrible complications he has they look at him as if he’s making it up, so many think you caused it yourself by eating too much sugar and you will be fine if you stop.

    My husband SUFFERS from Diabetes, it affects every single moment of everyday, he has lost so many opportunities due to it, if he does any physical jobs at all he has a hypo, if he cuts his insulin in the slightest he has sugars of over 20.We don’t go on overseas holidays as the heat makes my husband hypo, and we are fearful of the medical treatment he would receive. We even have to do our food shopping when his blood sugar is higher so not to risk a hypo whilst out, diabetes does control every part of our life. You are one of the lucky one’s Helen so please don’t belittle the illness and those who really do suffer.

  5. Ann Kenneally says

    I found Helen May’s blog very interesting and inspiring especially for newly diagnosed People. I have had diabetes type 1 for 50 years in September 2014 and with a few little aches and pains including eye ops and recently arthritis I have lived my life and enjoyed the time I have had and expect to enjoy a whole lot more!! I feel sad that some folks have major problems but that said I have tried to remain positive even when my health has been a problem. When I reached my 50th birthday I visited the NHS clinics that had steered me through the tough times and had shared the great times with me just to say to them thank you. I am now a Grandma and have 2 beautiful children I never thought I would have the pleasure of 3 Grandchildren. In one of my endocrine clinics I met a very sweet elderly man who was ‘celebrating’ having diabetes for 70 years! He was so positive he made me feel newly diagnosed! Diabetes is not the end it is just the beginning of another chapter in life. Arthritis on the other hand is a pain and in my case lots of sport may have contributed ah well you can not have everything

  6. dj says

    I have had type 1 diabetes for 3 years. I agree that I have not suffered pain, but in other ways I do suffer. I have other symptoms such as anxiety from hypos, mental exhaustion from the constant treatment and fatigue. I think people use the term ‘suffer’ to describe the affect of living with diabetes. Some people seem to be able to live with diabetes much better than others so to say you have diabetes therefore you suffer is wrong but to say living with diabetes causes me to suffer is valid.
    There needs to be a greater understanding in the media about diabetes. This should reflect the different stories of living and treating diabetes.
    I am thankful that those I live and work with ask me about diabetes and choose to help me day by day so that I suffer less.

  7. Helen says

    Hi Rachel.
    Thank you for your comments. I am very sorry to hear about the difficulties your husband experiences due to diabetes.
    I realise everyone has a different experience of diabetes and that not everyone is as lucky as I have been in the last ten years. When I wrote this post, my plan was to follow it up with the other side of the coin in my next post.
    So thank you for highlighting this and I apologise if, if anyway, you felt I had belittled your husband’s experience: this was never my intention.
    Best Regards,
    Helen.

  8. Louise says

    Well written article and some excellent comments about how others too have to live with diabetes or live with someone with diabetes. Both my parents have type 2 diabetes and I have had many concerns about what that might hold for my future because both were in their 50’s when given the diagnosis. However, they are able to live relatively ‘normal’ lives as long as they take their medication. I think, as with many illnesses, everyone ‘suffers’ in their own way. Some are lucky enough not to be affected daily, others have to endure it everyday.

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