20 years on and I’m finally getting serious

[Seghes]

Being diagnosed 20 years ago was almost a non event - couldn’t take it that seriously. Over the last couple of years I met other diabetics in a group and found that environment engaging and sometimes quite moving. It was a great alternative to the regular diabetic checks with a clinician - always good for proper advice and recommendations- which didn’t get through to me. Listening to other diabetics really did. This got me thinking…….. I’m now trying to put together some sort of group contact points which are aimed squarely at what I now know to be described as the”psycho-social” aspects of diabetes. In other words the emotional impact on a person, their relationships, moods and how these affect behaviour (in my case a denial of reality and refusal to care for myself).

 

[EmmaL76]

The emotional side has probably been the worst aspect of this disease for me. Unlike you I’m in the opposite of denial (not sure what the word for that would be) but that hasn’t done any good for my mental well-being.

 

[everydayupsanddowns]

Welcome to the forum @Seghes

I think you are right - there is potentially a huge amount of emotional and psychological impact both at the time of diagnosis, and on an ongoing basis as the years roll by, and the duration of diabetes increases. There are scientific measures of things like the ‘diabetes distress score’ and PAID ‘problem areas in diabetes’ which try to formalise them and make them more observable.

Personally I absolutely agree about the difference of hearing shared experiences from others living with diabetes, and facing its daily challenges, versus hearing perhaps even the same suggestions from a ‘nonny’

In a sense I think online communities like the forum can do a great job of connecting geographically distant group of people so that it’s possible to meet a wide variety of others using a number of different approaches and strategies to compare notes with. People who instinctively ‘get it’.

Really glad to hear you have decided to get to grips with your diabetes. Let us know how you get on 🙂

 

[rebrascora]

I think one of the concerns about connecting with others in a non clinical, less broad scale than the forum is that it can perpetuate misinformation and "snake oil" remedies. The reason I say this is that one of the first diabetic people that I came across after diagnosis was propounding the virtues of hydrogen peroxide as a cure! He took 10mls in a glass of water every day and was adamant that it was sorting his diabetes..... No testing or evidence but he felt it was working and highly recommended it.... Needless to say, I was sceptical.
The great thing about this forum is that information is shared openly across a whole spectrum of knowledge and experience and anything untoward can be called out or challenged, so only the tips and recommendations which actually work are perpetuated.
As regards the mental aspect, being able to exchange thoughts and feelings with others here and learn from them, has been a sanity saver.

 

[Seghes]

I appreciate your replies, @EmmaL76 @everydayupsanddowns and @rebrascora. I have found the forum a welcome mine of information and encouragement. And I still stand by my desire to seek personal contact with others. I have seen so many encouraging stories here of people who have made their own pathway through and have leant a lot about the condition and how to deal with it. However I met an old acquaintance last week, Joy, a lovely sociable, mature woman who has had type 2 for many years. She has no apparent interest in the condition and continues to eat and drink what she likes despite being overweight and unfit. Her response; “l have pills”. Our encounter reminds me of my meeting with a diabetic nurse yesterday who told me of many difficult clinical review conversations she has with diabetics who are disengaged and apparently inarticulate about their high levels and lifestyle. There are many Joys around who will never visit the forum and who remain unconsciously stoic in the face of well meaning professionals. I believe these are the groups who may be most suited to meeting others who talk and think like them and who may benefit from a different kind of social engagement. It may only take one or two in a group to talk about their struggle and the impact of diabetes to shift something in others.