Dear Media

Dear media

One day I'm this, one day I'm that,

One day I see you calling me fat.

But what do you know about my condition

What do you know about life on this mission.

Do you see me lying awake at night,

Tears run down my face as I keep trying to fight.   

Do you see me inject, prick my fingers and more,

Do you care about this side, my side of the war.

You sensationalise, you provoke, you speak without care,

You pass judgement on an illness that I have to bear.

You know not of what it's like to live in a body that's broken,

You take words, you twist them and say they've been spoken.

I can't speak for others, this is how I've felt,

I've struggled in silence from the cold blows you've dealt.

I've read and I've listen to misinformation,

When you've had a voice, a voice to educate the nation.

An icon, an image, an unattainable figure, 

You showcase them all, but that causes a trigger.

And what about me, what do you portray,

What you think I should be, what you think I should weigh.

To you I'm a story and a stereotype,

Bad news sells and you thrive on the hype.

The sad fact of it is, you do more harm than good,

If only you listened, cared and understood.

What effort would it take to not make that mistake,

Then when I see those words, I won't feel my heart break.

Your words, they cut through me, straight to the core,

But I stay strong, I have to, I've been here before.

Look at my scars, look closely and you'll see,

They lie on the surface and deep within me.

The big smile, the brave face, I say that I'm fine,

But inside I'm hurting, because of your lie.

Dear media, please help, please give us the choice,

We'll show you the facts, the decisions, the voice.

Dear media, please help, please make the change,

Diabetes is serious, so respect us, not fame.

Ninjabetic

Don't pity me - learn from me

Today's blog post wasn't meant to be here. It was going to be written for my nursing blog as I wanted to talk about my first patient experience. Instead I'm writing about a comment which was made in response to my diabetes.

I'm volunteering at a local centre, gaining some hands on experience with patients. Today I was chatting away with a patient who has Type 2 diabetes. I struck up conversation as soon as he mentioned his diabetes and chatted with him as we both have the same consultant. As the nurse who I was shadowing came into the cubical she caught the end of our conversation.

"Do you have diabetes Laura?"

I replied (quite proudly) that I have Type 1 diabetes and was diagnosed 10 years ago at the age of 16.

"Oh you poor thing, but you're so slim as well!" was her response.

I was stunned and quite disheartened by this. I felt my face drop and didn't really know what to say at first. Admittedly it wasn't the first time that I'd experienced a lack of knowledge or understanding about the different types of diabetes, but I've never experienced it from a health care professional before. I couldn't not say anything could I? Diabetes is important to me, it's a part of me, it's the area that I want to have a career in and I think of myself as a diabetes advocate now. If I didn't correct the comment then I'd be letting the side down. Go team!!

I explained that weight has nothing to do with me having diabetes. I reiterated that I have Type 1 diabetes and explained that it is an autoimmune disease which has nothing to do with my lifestyle, and I had no influence or control over my diagnosis. I felt that what I was saying was such an obvious statement to make that I may have sounded patronising, but I was polite and I didn't let on that I'd been offended.

However there was no getting away from the fact that a health care professional had said this. The comment hadn't been made out of malice and could have been an honest mistake, but to me this just shows what a lack of education there is out there. We need to trust people to care for us and to know how to manage our condition, but can we trust people who don't know the basics of diabetes?

Hopefully the tiny bit of knowledge that I passed on will be remembered and passed on again... hopefully.

What has also been playing on my mind was the pity; "Oh poor you." I didn't understand why someone was feeling sorry for me. I'm happy healthy and fit! I don't look ill and I'm learning to manage my condition. I personally don't see diabetes as an illness the majority of the time. Occasionally it does give me a good beating but I still live a normal life.

I know the effects of negative perceptions about diabetes. I've experienced those effects first hand and I can honestly say that supporting someone and highlighting the positive aspects has much more of an impact than pitying and focusing on the negatives. No one should be blinded by the media and the way that Type 1 diabetes is wrongly portrayed. Ask us, make the effort to see what we can do, look at us and see the real image of a person with Type 1 diabetes. People will be shocked that we aren't the stereotype that is projected to the general public, maybe that will shock them into thinking next time before speaking.

I would never pity anyone who has a chronic condition; in fact I would praise them for picking themselves up time after time and getting on with their lives! I'm a stronger person for having diabetes and if anyone feels sorry for me then they can walk on by.

Ninjabetic

Stop bashing my Health Care Professionals….

I’m sure that we have all read in the papers at some point that diabetes care is not at the standard that it should be. That “Only half of NHS patients are receiving acceptable care” - The Independent. As people with diabetes we want to know why this is happening and what is being done about it! As soon as a story is published with any negativity it causes uproar throughout the diabetes community, and I for one admit that I’ve joined in before! It’s so easy to get caught up in it all, but we need to stop and think about how this negativity affects those who are trying their best to help us.

Do we really think that hcps aren’t trying? That they only put in half hearted efforts? That they spend years at medical school to not give everything they have to their patients?

I don’t have statistics or charts to show you all because none of that matters to me right now. I can feel in myself everyday that the work my hcps have put in is doing me the world of good and that is what is important to me.

We need to show that there isn’t just bad news out there, that diabetes care has come on leaps and bounds in the last few years and most of all we need to pull together as a team to support our hcps…. because where would we be if we didn’t have them? We need them, and I know that they do their absolute best to give us the care we deserve! So next time we see the papers bashing our hcps, please stop and think from every angle about where to place the blame.

I collected a few stories today from people who agree that hcps are wonderful people and they deserve a massive pat on the back for what they have done for us. Please read through them and add your own  story in the comments section at the bottom of the blog if you would like to contribute!

Jen said; “I'll always be thankful for my DSN teams through the years, especially the ones that said yes to be trained to do the DAFNE course. You guys are a big part of the reason I'm still alive today. Thank you also for helping my parents cope with their daughter's diagnosis at such a young age. I can fully appreciate that being healthcare professionals is never easy; trust the ignorant to make it all black and white when it's not.” - Jean, Belinda, Frank & Doctor Huston at James Paget University Hospitals NHS Foundation Trust.

 

Gemma said; “The team I work with in the Ulster hospital are very close knit and supportive they have seen me through pregnancy related diabetes, and followed my journey to where I am now. They have always supported my requests and always been full of encouragement even when things weren't going my way. They taught me that one bad sugar is not the end of the world. What matters is trying your best and living your life Best piece of advice - You are a person first and diabetic second, and that should never change.” - Ulster Hospital, Belfast.

Martyn said; “My diabetes team are my guardian angels. When I think of all the positive things that have come out of my diabetes, they're right there... it was my DSN who encouraged me to start volunteering for Diabetes UK, because she helps to organise weekends for children with diabete. If I have a question, about going to a music festival or even just how to deal with a cold, I know she's right there on the end of the phone or email if I need her. She, and the fantastic doctors at my clinic, worked to get me an insulin pump, and I'm so grateful, because it's given my diabetes a kick up the proverbial backside. Finally, I feel I should give a quick mention to my local doctor's surgery and pharmacy. 99% of the time, they put up with my constant prescription changes and requests, and they always get my repeat prescriptions sorted in about a day. So thanks, everyone, for keeping me alive and happy! You're alright really.” - Hospital: Princess Royal Hospital, Telford.

Hannah said; "my doctor for every moan i have about him is a truely brilliant doctor. i cannot put into words the grattitude i have to him for what he did. he never ever gave up on me at my worst and when he did get through to me and i changed he was there for advice and support every step of the way. him and my dsn are on the end of the phone of the computer if i need help, and my dr keeps a check through the dsn on all of us. not just is he a brilliant doctor in every way but i actually get on with him as a person, he doesn't make the appointment all about diabetes." - Fairfield General Hospital, Bury.

Leah said; "My son, aged 13 months, fell into a diabetic coma. He was transfered to Guys Hospital ICU and they were fantastic. Once he was out of the woods we were transfered to St Thomas Hospital, London, they were also amazing and so supportive. He was then moved back to our local hospital, Darenth Valley in Dartford, where his diabetic team have been fully supportive and helped me apply for the pump 6 years on. The regularly check in and help me. Our pump team, especially Ann from accucheck, have been amazing helping me overcome my fears and doing extra work training us. His diabetic paediatrician, Dr Gupta of Darenth Valley always refers to us as family and even comes to see my son whenever he is admited."

Ninjabetic (Me!); "Last year I was on a complete downward spiral when it came to my diabetes and I saw no way out. For me it was the end and nobody could change that. If I hadn't met my consultant then I am quite sure that I would not be writing this now. His enthusiasm and passion for diabetes and the commitment to his patients has inspired me to pull myself back. I honestly feel that I owe him my life and there are no words to thank him enough. He is completely dedicated to all of his patients and I know that he will always be there for me, whenever I need him. He deserves so much recognition for his hard work and dedication and I know that he will continue to improve the lives of people with diabetes in any way that he can. - Dr Partha Kar, Queen Alexandra Hospital, Cosham.

I'd just like to thank everyone for their stories and I hope you have all enjoyed reading this blog!

Ninjabetic