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amyJ

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I was diagnosed with T1 at 11 years old and I'm now 26. I've had ok control, I cannot bear to test my blood Glevels, but I think I'm OK at administering the correct amount of insulin for what I'm eating.

Going through my teens with diabetes was hard. I had frightening incidents with hypos, my siblings used it as a way to get at me, basically there are a lot of horrible memories relating to it, be it t school or at home. Around 16 years of age, I developed a horrible feeling whenever I thought of my illness, I'd get fear and anxiety when seeing the doctors about it. Things have been like this since then. I cannot bear to even say the word outloud and I loath to talk about it with anyone. I don't tell anyone I have it becuse I will cry and feel overwhelmed with the feeling it gives me, I even avoid going to the doctor becuase I hate talking about it. I feel so ashamed and I don't know why. I've been to councelling and that didn't help. Each time I'm forced to see a nurse so I can get my prescriptions, I break down and tell them the same story I've been telling for years. They might refer me somewhere but the event leaves me so exhausted and upset that I just never follow through with their advice.

Most days I'm happy, I lead a fulfilling life as long as I'm not having to think or talk about it. I know this is not going to go away and that I have to sort myself out but it seems that feeling like this is just how things are for me now.

Does anyone else feel like this and can anyone give me advice on how they came to terms with it?

Any help would be hugely appreciated.

Amy
 
Hi Amy,
My name is Suzann and I have had type 1 diabetes for 25 years. Although I got it at age 25 years, I do have type one. I just want you to know that what you are going through is not unusual. Diabetes is a drag, but it is possible to live with it and have some quality of life.

I would recommend first of all to reach out to Jesus for support. He is the one who will turn your life around for the better. It is great that you reached out for help through this discussion online. I would also recommend that you try to find a group of people to connect with who are caring and willing to support you as you live with this disease. Unfortunately a lot of people are judgemental and uninformed about what it is like to have diabetes.

I understand how you feel about not wanting to mention the word diabetes, or have A1C's, or face the disease with doctors. I would recommend to keep trying. Some doctors are easier than others to talk to. If you are open to it, I will pray for you. Sincerely, Suzann
 
Hi Amy,

So sorry to hear that you're feeling like this. I am also 26 and was diagnosed when I was 6. I have also found it hard to deal with/talk about in the past. Although what I have experienced probably isn't on the same level as you, I hope it helps anyway.

When I was first diagnosed, my parents did a lot of the work for me. I was too young to really understand and manage it by myself. As I got older I took more control and that is when the problems began. I hated the fact that I wasn't "normal" and was bullied at school because I has to measure my sugar levels, do injections and so on. I then started to become very secretive about the whole thing, almost ashamed of being diabetic.

When I hit 14 I really let my control slide. As my sugars become less well controlled I started to lose weight. This then became a downward spiral. I developed an eating disorder and was barely injecting. I ended up in hospital with DKA and was really lucky to survive. Although this was a wake up call I couldn't bare to admit to my friends why I had been hospitalised. This was just before my 17th birthday. I told my friend that my drink had been spiked at a house party the night before I was admitted. This seemed less embarrassing than admitting the truth.

These days, my control is a lot better but I still do not like talking to people about my condition. I think a lot of people still associate diabetes with obesity, bad lifestyle choices and so on. This seems to be the diabetes that a lot of people know about. When I do explain to people what type 1 diabetes mean and the potential complications, I hate it. I don't want people to think if me as somebody with a life-long illness. Even though I know my friends dobt judge me like that, the feeling can be hard to shake.

Things have got a lot easier but there are still sone aspects of my diabetes that I try and hide.

I understand that it is hard, but talk to some of your closer friends about it. I found that really helped and, in turn, made me more comfortable talking openly to my diabetes team about things. Forums like this are great for Chatting through things but you need to be more comfortable in yourself.

I hope you get things sorted soon. If there is anything else I can do to help, feel free to send me a personal message or reply.

Your diabetes is nothing to be ashamed of, but I can relate to what you are going through.

Take care, Amy.

Em x
 
Amy, you are certainly not alone, lots of us go through feelings similar to those you describe.

For myself, the thing that brought me out of it was meeting other people with diabetes. I heard them talk about it, be more open about it than I was, even be proud of it in terms of how they cope with it alongside everything else.
The first person I met who had this positive attitude was someone I worked with. I started a new job and he had his insulin pen on the table next to him. For the first time in my life I made the decision to tell him, and then our other work colleagues, that I was type 1 too. It was scary but life-changing. It made me stop being ashamed and wanting to hide it, and start being as proud of myself and all of us diabetics for what we do every day. I don't always tell people I'm diabetic, because like Elc1112 I can find it stressful to have to be the person who educates everyone else about the disease, and I *hate* being pitied. But I don't feel ashamed any more. And now I'm doing research into type 1... not something I ever thought I would be able to face!

If you want to meet others rather than leave it to chance then I think diabetes UK do have some adult support weekends on their "Care Events" site. http://www.diabetes.org.uk/How_we_help/Care-events/ (At the moment though they are all kid or family events on the website).
Another way is to get referred onto a DAFNE course which is about teaching self-management skills. Even if you don't think you will get anything out of the education part, you will meet others who have type 1 so it may be worth it for that. http://www.dafne.uk.com/all-courses.html

good luck. I really hope you find something that works for you.
 
Hi Amy, if it helps, I can relate to everything you and the other posters have said! It's certainly not easy living with type 1 every day.I hope it gets easier for you. Over the years, it has for me. In fact, just last weekend I was chatting to someone I'd not known for long and she was talking about a new low carb diet she was trying (she's not type 1 or 2, just trying to lose weight!) and I took a deep breath and told her I knew a bit about carbs :wink: and showed her my pump etc. Turns out, her ex husband was type 1 so she had all kinds of experience and knowledge herself! Which just goes to show, sometimes, the response you get from people isn't as negative or as scary as you may think. Ok, so this was a one off but I hope it demonstrates that sometimes, it's good to talk about it :)
 
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