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Diabetes and feelings - Open thread

plekk

plekk

Newbie
Messages
4
Location
Sweden
Type of diabetes
Type 1
Treatment type
Insulin
Hello everyone! have lived with type 1 diabetes for 23 years, since I was 2 years old. I have met other people with diabetes but haven't really discussed the effect it has on our psychological and social part of our lives so I thought this seems like a good place to start.

Living with a disease that could potentially give you epileptic shock and in turn kill you (if mistreated) on a daily basis HAS to affect us is my belief.

I personally have never been asked by a medical person of any sort how it makes me feel to live with diabetes since I became an adult, this question came up alot during my childhood and the answer to the question Then was: "I don't know" as maybe you could imagine, a child might not know these things.

Growing up with diabetes has given me a feeling of confusion. Not understanding why you feel frustrated at others for no particular reason can be very confusing and in my case lead me to believe I was 'just weird'.
Whenever I had high blood sugar levels while being social it caused people without diabetes to not understand my actions which in turn lead to social awkwardness or being shunned.

These things are very serious and needs to be discussed!

Have you been in a similar scenario?

Have your doctor put focus on your social well-being as a diabetic?

Do you think we are socially different from non-diabetics?

Feel free to discuss whatever you feel like in this thread.
 
Absolutely agree with you for the most part on the social and “hidden” psychological aspects of the condition. I believe it affects different people in different ways though. Unfortunately I have never been the type of person that is good at communicating my feelings to other people and prefer to keep myself to myself. As a result of this I have often hidden my condition from other people. I have worked in jobs for years sometimes and never told anyone that I am Type 1. My wife’s cousin is a Type 1 and when I lived in NZ he came over from Perth Aus to stay for a few days and we went out with friends for a meal and he was quite open about his Type 1 and put his insulin on the table and injected in front of lots of people he had never met etc. I found this very uncomfortable because I felt it drew attention to me in a way that I was not happy with.
I think the reason for this is generally the lack of knowledge surrounding the condition and the way that people will treat you differently. When I was a child I used to just have 2 injections a day and in those days was not allowed to eat sweets etc. However I always felt isolated because whenever I went to someone else’s house they would have to make me separate food etc. Treatment has now become vastly improved with different insulin’s and pumps etc but I hate it when people sidle their way up to me with a grin and say “You’re not supposed to eat that” as if I’m doing something wrong.
I am not currently driving at the moment due to some problems with hypos last year and at my last appointment with my DSN she still wanted my HbA1c to rise a bit. When I asked about driving she ummed and ahhed but basically said she didn’t want me driving at this stage. She then said that driving was not that important as I lived in London. She completely missed the point that my diabetes was starting to prevent me from doing things. I don’t drive much anyway but I am now being prevented from doing this because of my condition. This has a damaging mental effect that non Type 1’s just don’t understand. My wife has battled over the years with a weight problem and is very strict with herself in what she eats and I know it is her demon. But when I try and discuss my situation with her when my blood sugars are erratic or I am struggling she says that she has to battle herself everyday with her own issues. But this misses the point that every single thing a Type 1 does in relation to insulin, eating and exercising effects your body in a very short time frame and it never ever stops and even when you are asleep there is no escape. This makes me feel lonely and isolated but I don’t want to discuss it as I don’t want to be seen to be moaning about it all the time so keep my issues to myself. Non Type 1's just don't get to see this side of the condition.
I am actually just offloading a bit here but it is the chronic nature of the condition that generally I have begun to notice. I have had issues in the past with visits from the Black Dog and this is not really taken into account that well either by people in the medical area or those closest to us. I feel diabetes is a little demon that only I can see that sits on my shoulder and disrupts my daily life. I try and forget about it or take measures to deal with this but it often gets me down.
 
Your reply was a very interesting read.
I recognize myself alot in your text so please know that you are not alone in feeling like this!

"My wife has battled over the years with a weight problem and is very strict with herself in what she eats and I know it is her demon. But when I try and discuss my situation with her when my blood sugars are erratic or I am struggling she says that she has to battle herself everyday with her own issues. But this misses the point that every single thing a Type 1 does in relation to insulin, eating and exercising effects your body in a very short time frame and it never ever stops and even when you are asleep there is no escape. This makes me feel lonely and isolated but I don’t want to discuss it as I don’t want to be seen to be moaning about it all the time so keep my issues to myself. Non Type 1's just don't get to see this side of the condition."​

This is what needs to be fixed. I think we need to be able to discuss our type-1 related issues to other non-type1's however this isn't something I feel I can today.

I will personally talk to my doctor about how I could try to make people understand that this disease has psychosocial effects, I suggest you do aswell!

No type-1 should tuck their feelings aside because they feel others can't understand it.
No person should feel sad and lonely because of a condition, we should instead be proud for dealing with the obstacles of having type 1 every single day and making it!
 
I'm very surprised they've not asked about your well-being at the clinic appointments, usually they do ask about depression and how your coping with diabetes and your given the opportunity to reply, they never use to mind but in recent years this has become part of the norm and we have discussed this before on the forum.

As for the question ''Do you think we are socially different from non-diabetics'' the answer is No, yes we do have to do some forward planning in work and in social situations but I don't see myself as any different to the next person.
 
noblehead I have only ever been asked about my mental well being at 1 GPs over 23 years. I have recently sought out an appointment with a specialist and will post about it over the weekend. Not sure if its a national service or a local one.
 
Engineer88 said:
noblehead I have only ever been asked about my mental well being at 1 GPs over 23 years. I have recently sought out an appointment with a specialist and will post about it over the weekend. Not sure if its a national service or a local one.
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That's a shame, mind I was referring to the hospital diabetes clinics not gp surgery's......... although I don't see why they can't ask about a patients mental well-being:(
 
noblehead said:
That's a shame, mind I was referring to the hospital diabetes clinics not gp surgery's......... although I don't see why they can't ask about a patients mental well-being:(
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I meant once from all contacts with DSN GP or consultants. I think they believe if you grow up with it 'you'll be ok'
 
I have never been asked about my mental well being.....

but I suppose everyone is different.........I have never been in situations similar to the ones you described about being high and people seeing subsequent behaviour as uncomfortable, I suppose this is because my mood and behaviour don't change when I am high, not noticeably anyway....

I have also never needed much acceptance of my daily needs as a diabetic, my wife helps out with my carb counts and so on and takes an interest when I come back from the clinic with HbA1c or other results, but this is as much as she does for me, and that's fine.....

My work colleagues that are in the immediate vicinity know of my condition, and I can quite happily test my blood and give my bolus in front of them, but I have always enjoyed talking about diabetes with others anyway.....

So again, its all about what your like as an individual......

do you cope with your diabetes?

do you need to see people support you or are you happy with just a basic understanding/tolerance?

are you embarrassed about your diabetes in public?

Everyone is different, my diabetes has not effected my state of mind at all really, my feelings are the same, the only thing I worry about is complications....as we all do......

I am not socially different form non diabetics, and I don't think anyone else is, but its all about how you feel about yourself...
 
I just recently started coping with my condition. I basically ignored it except for taking my insulin.
That's why im interested in seeing how other people with type 1 diabetes think about it all, because I'm not sure how I do.
 
I am probably quite different in my view from others but I find being Type 1 an embarrassment really. My control is actually very good so I don't neglect myself but I feel awkward having to talk to them about it. When I have hypo's I feel ashamed that I have lost control and the times I have had bad ones in public I think people around me wish it wasn't happening so they didn't have to see the results. I think it is just the drip drip drip of little incidents and comments over the years that have eventually made me just want to be left alone with it. That is obviously just the way it affects me and I know many others would be able to stand up better to these sort of events.
I think there is a feeling as well that, Engineer 88 said, as I have had it for the majority of my life I'll "be used to it" now. No one really seems to want to ask the questions about how I'm actually really feeling.
 
I think for a lot of people, they are just plain ignorant. But also, a lot of people only see what they want to see and I would conclude that until we have experienced something ourselves, we can never truly relate or judge. Don't let others judge you and don't judge yourself based on other peoples opinions - judge yourself by your own standards.
With regard to the potential risk of diabetes - every day can be beautiful when we wake up to see it.
You can only do your best, life is short and although some of us have a harder time of it than others you can still have a worthwhile and happy life, despite whatever comes your way
 
Emotional and psychological support are one of the 15 essentials that DUK recommend.
They also say that if you are not getting the checks that you should be then print the list off and show it to your healthcare team.

http://www.diabetes.org.uk/Documents/Guide to diabetes/15-healthcare-essentials-checklist-0913.pdf

Everyone with a long term chronic condition needs this support.

For anyone newly diagnosed this explains the emotional upset that a diagnosis provokes, it is similar to grief as you grieve for the life you had.

http://www.diabetesexplained.com/the-five-stages-of-grief.html
 
Don't let others judge you and don't judge yourself based on other peoples opinions - judge yourself by your own standards.,
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Thank you for that, I needed it today.
 
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Second that Tweetypie, thanks!
also thanks to catherinecherub for the PDF, I will make sure to have this in mind on my next appointment.
 
Engineer88 said:
I meant once from all contacts with DSN GP or consultants. I think they believe if you grow up with it 'you'll be ok'
Click to expand...

Well that's never the case, things can catch up with us at any time in life.

As I said the depression question has only came about in recent years from what I can gather, I think the first time I got asked around 5-7 years ago and it was part of a tick-box questionnaire that the consultant was filling out as part of my review.
 
I get asked about depression every time at the doctors but never at the diabetes clinic. When they ask at the doctors it's just so they can tick that they've asked. No idea what they'd do if I said yes.

Smidge
 
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