Hiding diabetes

Flower

Flower

Well-Known Member
Relationship to Diabetes
Type 1
Until I joined this forum about 12 years back I'd never spoken or written about diabetes. I couldn't say the word out loud and still struggle today.

When I was diagnosed as a young girl in 1978 my parents reacted badly to my diagnosis. My paternal Grandma was diagnosed with Type 1 in the 1920s not many years after insulin was discovered and sadly died young with complications. I've written before that I was told not to tell anyone I had diabetes and I never spoke to my late Dad about it and I barely spoke to my Mum about it either. It was pre internet and I didn't know anyone else with T1 or realise others were struggling as much as me. As soon as I was old enough I went to clinics on my own and once I left home I started skipping clinics and descended into a spiral of eating disorders and complications.

I met up with two school friends a few weeks back after 40 years! I had to explain my leg was in a cast and I couldn't drive due to sight loss so they kindly came to my house. We chatted about all that had happened over the years and friends we'd kept in touch with and then they asked about my leg and sight loss. I talked about being diagnosed with Type 1 diabetes in 1978 and how much I'd struggled with it all over the years. They were in the same class as me for 6 years of school and sixth form, we used to go out to parties and events together & they had no idea I had Type 1. It hit me then how much & how well I'd covered up and hidden away my diagnosis- it was easier back then pre blood glucose testing and MDI but was so risky not to tell anyone.

It shocked me how much and for how long I'd hidden things, how much it affected me mentally and physically and prevented me from seeking help when things started to go very wrong. Reading posts on this forum asking for advice and the help & reassurances given acknowledging what a tough relentless thing diabetes is has helped me so much to start to unravel the problems I couldn't speak about for decades. Thank you everyone 🙂
 
Thanks for sharing @Flower

Lovely that you are still in touch with school friends 🙂
 
everydayupsanddowns said:
Thanks for sharing @Flower

Lovely that you are still in touch with school friends 🙂
Click to expand...
It was lovely to meet up again after 40 years, it didn’t feel that long. We agreed to meet up again in the next few months & not risk waiting another 40 years when we’d be 98! 😱
 
I urge you to not let go of that connection. There were a little gang of us from school - who used to get together (with husbands) for important personal milestones despite living miles apart. One lost her husband during lockdown, so no funeral or memorial service, I lost touch with her, she subsequently died - never heard about a funeral until the day before when we were on holiday anyway, another died last year, in Spain, but we did go to the memorial for her, where they lived here. 2 of us left now - and we now have absolutely nothing whatever in common and have no knowledge or interest really in each others lives.
 
I'm so glad that you've met up with your friends @Flower. My best friend of 44 years is also Type 1 diabetic but when we were younger we never talked about the diabetes and compared to me she was very strict with how she controlled her diabetes. I tried to be but was easily mislead into not being so good about myself. I guess that as I was growing up in my teens I rebelled and wanted to feel "normal" at least with regard to food and alcohol. At the age of 55 my best friend has no complications and I'm so pleased that her discipline worked for her.
As my health has got worse I have lost a lot of friends, mainly because I haven't got the energy. But I am so grateful for the friends I have got, that I've met in person but whom I'm now only able to talk to online. I'm also extra extra lucky that I have three friends from school that I am in touch with nearly every week. We try to meet up when we can, it's not always easy to do that but we're always there for each other. Each of us is very different but there's some kind of magic that keeps the friendships working after so long.
 
Thank you for sharing this @Flower.
So good having you on the forum, and pleased that it helps you, and so many others.
It is hard to imagine the reaction of your family at your diagnosis and the lack of support that you had.
Keep those contacts from the past. They are invaluable.
 
You might not have talked about it then and felt that you were unable to do so, but your very open and honest and heartfelt posts now on this forum like this thread, no doubt help many other people who are struggling with their diagnosis and hopefully help to banish that feeling of shame or needing to hide it, from modern society. I have learned to be very open about my diabetes from the experienced members on this forum like yourself and also from the youngsters like the 2 young women (16 and 23) on my DAFNE course who were so open and comfortable about exposing a bit of midriff and injecting in public, whereas I had previously headed to the loo to inject in private. I think it is a wonderful benefit of this forum as we can all learn from each other and improve things for the future.
I am sure it takes you a lot of soul searching to write about your struggles with diabetes and it's complications but I am so pleased that you find the courage to do so, both for your own sake to help make sense of things and come to terms with them but also for others to learn lessons and benefit from your thoughts and experience, even though they haven't always been kind to you and your body.
You are very brave and inspirational and I take my hat off to you for the insights that you bring to this forum. You are a hero in my eyes.
 
trophywench said:
OOOOOOOOOOOOOOOOOOOOH! - never EVER EVER EVER inject in a loo!!!
Click to expand...
My pen and needle never touch any surface whilst in the toilets other than me, so other than it being part of the mentality of hiding your diabetes and inconveniencing me, I don't have a problems with it.
What part of injecting in the toilets do you find so very problematic?
 
Well yeah so have I - you and I may have access to bleach and know how to clean etc - but that doesn't mean everyone else does too and I absolutely do acknowledge it can be risky!

You jest Barbara - bathrooms are the most germ laden unhygienic rooms in peoples houses and thats just with you and your family using it. In restaurants, pubs etc with all sorts of folk using them and obviously never knowing their state of hygiene - just YUK. Over the years the amount of faecal matter found on toothbrushes doorhandles taps etc in peoples bathrooms - partially because such a lot of people don't close the lid before flushing - is vile even if they do. Not necessarily that bad for you if you breathe in your own or your family's sheet, but strangers' muck landing on your insulin pen ????????
 
But you breath in these public toilets and that is a whole host more bacteria entering deep into your body than a tiny, tiny amount that might land on the end of a needle for the brief moment it is uncovered, before you jab yourself and that is only going under the skin not deep into your lungs. Really, I think if you worried to this extent about bacteria you could drive yourself insane and I suspect such information is released to sell more disinfectants, bleaches and antibacterial wipes!
Our immune system has evolved to deal with far more serious challenges than entering public toilets and breathing the air in there and I am what I consider a bit fussy about the cleanliness of toilets, which is one of the reasons why I wouldn't want to go to a music festival, but it is a dislike of dirty toilets rather than a fear that they will injure my health.

It is just as well we don't have microscopic vision otherwise we would be horrified by everything we see everyday, everywhere.
 
trophywench said:
Well yeah so have I - you and I may have access to bleach and know how to clean etc - but that doesn't mean everyone else does too and I absolutely do acknowledge it can be risky!

You jest Barbara - bathrooms are the most germ laden unhygienic rooms in peoples houses and thats just with you and your family using it. In restaurants, pubs etc with all sorts of folk using them and obviously never knowing their state of hygiene - just YUK. Over the years the amount of faecal matter found on toothbrushes doorhandles taps etc in peoples bathrooms - partially because such a lot of people don't close the lid before flushing - is vile even if they do. Not necessarily that bad for you if you breathe in your own or your family's sheet, but strangers' muck landing on your insulin pen ????????
Click to expand...
Actually, no. The most germ laden room in most houses (and most restaurants) is the kitchen. There’s about 200 times more faecal bacteria on an average chopping board than on a toilet seat.
 
I avoid injecting in toilets most of the time but there were times I needed the privacy only toilets provide in a public environment.
For example, unless I wanted to blunt my needle by injecting through my clothing, I needed privacy to lift a dress to access bare skin (either upper thigh or waist area) for injecting.
And now I have a pump, what should i do if it fails in public and I need to do a set change? I can prime my pump without privacy but cannot attach it (or remove the faulty one) without showing off my underwear.
At times, needs must.
 
I used to inject in my thighs, so unless I was wearing shorts I'd have to go and sit down somewhere - I'd try to avoid a toilet though, mainly as it's hard to juggle a pair of vials in paper boxes and the two syringe caps and syringe while drawing up insulin without letting anything touch a surface you're not too keen on. When I started going out more often to eat I got a pen (mixtard 50) which made life much easier (though intramuscular injections in the shoulder was the advice back then, ouch, I wonder why I never used my tummy like I do now...)
 
You must log in or register to reply here.
Back
Top