I'm Missing in Action...again

Many of you will know already that I'm up to my armpits involved with a type 1 diabetes conference called Thriveabetes and so for the next couple of weeks that's where you can find me. But for the benefit of my new readers and followers - let me catch you up:-) Thriveabetes came about because myself and a few others recognised a need for more that just a diabetes conference. We wanted a space where we could learn something new but also to spend a day with others just like us. We place extremely high value on learning from our diabetes peers and their support.

Our mission is to entice knowledgeable speakers who really know how to connect with their audience and who get it! A lot of our speakers live the life of a person with diabetes too. And to allow for people to hang out and form friendships as much as possible.

Thriveabetes will take place on Saturday, October 1st 2016 in The Killashee House Hotel, Naas, Co. Kildare. The event has sold out but we do have a waitlist up and running through Eventbrite for any cancellations that may arise.

Click HERE if you would like to know more about Thriveabetes.

Diabetes Discrimination in the Workplace

This is part 2 of my Diabetes Discrimination post. The first part focused on Diabetes Discrimination in your career choices. This piece was prompted by a presentation on “Diabetes Discrimination in the Workplace” at the Diabetes Hands Foundation MasterLab 2016 conference. Unfortunately the recording is no longer available.

I’ve never had a problem in any job that I’ve had but I also did not talk openly about my diabetes. I should probably add that I haven’t worked outside of the house in over 10 years (YIKES!!!) I felt that it was too difficult to communicate to people about an illness that I knew very little about and I got tired very quickly of the only response being “How awful, you can’t eat any sweets”. This was pre type 2 diabetes stigma. But I’ve also always had desk jobs where I could store my handbag and meter in my desk.

I do remember the one time that I disclosed my diabetes in a job interview and got the job. Soon after I started, my boss asked what should they do if I collapsed on the floor. This was in the days where I downplayed my diabetes becauses I didn’t want it to make me different. So I said, “Nobody panic! Call an ambulance, I wouldn’t be going anywhere”.

Other occasions, I didn’t disclose my diabetes until after I had received a job offer or started in my job. It still didn’t affect they way I was treated in the workplace. But I know that my experience isn’t everyone's.

I do find that these days, working/volunteering from home, that I tend to ignore things like pumps alarm reminders to check blood glucose levels because I just want to “finish this one thing”. I have to force myself to stop what I’m doing to do a check.

It’s up to you when to tell your employer that you have diabetes, or if you tell them at all. Unless you are asked (see below). But it is a good idea to tell them or your co-workers at some point, if only to know that someone has your back should the unlikely happen.

This information comes from Diabetes Ireland and I recommend that you keep a copy of it at your place of work to remind yourself that you do have rights.

Entitlements around Employment/ Education.

“You are legally required, if asked, to inform any potential employer of any long term condition during the recruitment process. Under the Employment Equality Act, the company cannot use your medical condition to discriminate against you in terms of successfully getting the job. Diabetes Ireland does not consider diabetes a disability nor do we consider it to have a substantial effect on any person’s ability to carry out normal day to day activities.

As a person with diabetes, you have certain rights. They are;

• - The right to eat food (either on the job, or to have a reasonable number of breaks to do so) is crucial for people with diabetes.

• - People with diabetes also have the right to monitor their blood glucose, and administer insulin or medication accordingly. If you work in a public environment, you might ask to have a relatively private space in which to give yourself injections.

• - People with diabetes also need freely available bathroom breaks.

• - As a person with diabetes, you might also request to work regular hours, rather than shift work, if your doctor feels that your glucose control will be made more difficult with changing patterns. However, this is at the discretion of the employer.

• - A person with diabetes is entitled to time off to attend hospital appointments. However, payment for this time is at the discretion of the employer. Medical information is confidential, and so you do not need to share your medical past with your employer. You can share what you want, but you should also share what will be needed.

The first step is to educate your employer. Explain what the effects of diabetes are and how diabetes can be managed. A person who manages their diabetes will not hold back any team. If anything, we suggest that a person with well-managed diabetes will be a benefit to their workplace, because they have learned organizational skills, self-discipline, and they lead a generally healthier lifestyle which results in fewer sick days.”

There is also more information on Diabetes UK’s website, as well as an Advocacy Pack on what you can do if you feel you are being discriminated at work because of your diabetes.

Diabetes Discrimination in Career Choices

Lucky for me, or maybe for the world :-O, I never aspired to be an astronaut or an airline pilot for my career. But I have met just a few people with diabetes who did. In particular, a couple who all they wanted in life was to fly airplanes. But when they were diagnosed with type 1 diabetes they ruled it out. At the Diabetes Hands Foundation MasterLab 2016 conference there was a fantastic presentation on “Diabetes Discrimination in the Workplace”  that prompted me to feature this issue. I’ve divided it into two posts though as it was getting a bit long.

The first of which is how diabetes may affect your career choice. The second post will feature discrimination in your workplace and what your rights are.

Did you know that it’s only since 2015 that a person with type 1 diabetes can apply for An Garda Siochana in Ireland? But there are still difficulties for people with type 1 diabetes who want to join the defense forces, emergency services, railway workers and some careers at sea? What this probably means is that no one with type 1 diabetes has succeeded in passing the fitness tests to qualify for any of these careers. (source; Diabetes Ireland). But other countries don't have these restrictions. Why can a person with diabetes be a member of the police force in the US and not be in Ireland? Well, it's because these rules are being challenged in those countries and winning!

In the UK, some NHS Ambulance Trusts, still have restrictions in place on people with diabetes who wish to be ambulance crew. But these restrictions are being challenged.

In the US a person with diabetes CAN be a firefighter or a police officer! You CAN be a commercial pilot in the UK and Canada but not in the US. This is being challenged also.

My point is if you have a dream, if you know what you want to do with your life, don’t let people put you off. If you feel that you are right for any of those careers, then go for it! Where there is a will there is a way!

Here's the video from MasterLab 2016 - well worth a watch!!

https://youtu.be/Cmw31JpoZbE

I had hoped to publish part 2 of Diabetes Discrimination along with this post but Ha! Intentions were good but time did not cooperate. Part 2 next week!

Blood Glucose Diary Faker

Renza from Diabetogenic wrote this piece on "fudging" our bg numbers in our blood glucose diaries and it fuelled my fire. It’s such a coincidence that we both attended conferences where the “Fake” blood glucose diary of a person with diabetes was held as an example of a “bad” patient! Renza’s piece is well worth a read on how she handled the situation and spoke up for all of us. She rocks!! My experience was more of the sitting quietly at the back in disbelief that this was how this conference was beginning. The conference I attended focused on changing the way care is delivered to young adults with diabetes.

I was diagnosed as a young adult - age 20. The instant I saw that photo and heard those words I had vivid flashbacks. I remember doing that! I even remember why! I remember that every out of range blood glucose number in my diary was questioned, I felt interrogated and I never knew the answer. Back then, there was no carb counting and no one told me that if I ate more food but still took the same amount of insulin that my blood glucose levels would be higher. It wasn’t bad behaviour or poor choices - it was ignorance. I remembered being lost, feeling so isolated and not knowing anything about diabetes, let alone how to manage it. I remember that I never felt I could ask for help with my diabetes from my health care team.

I did it because I didn’t want to be judged or reprimanded for something I thought had no control over. I was letting my diabetes team down.

This conference, supposedly, about health care professionals finding a better way to deliver care but this made me feel like the reason young people with diabetes were not doing well was their own fault.

What should have been said, and said clearly, was that if a person with diabetes feels they have to hide their blood glucose numbers from their diabetes team the patient is the one being failed. That the diabetes team are to ones letting the patient down. That your reaction to people’s blood glucose diarys need some work. That the fact that a patient has actually written down their blood glucose numbers at all is an achievement to be celebrated. That you, despite your best intentions, are being judgemental.

Thankfully, these days, I am much older and wiser and more assertive these days. And of course, there's the fact that I don't care very much what other people think of me. I do ask for help - it's not always available but I keep asking. I also have a team that seem to be a bit more open to conversation about what I need. But I am a little perturbed that 20+ years later, young people with diabetes STILL feel that they have to cheat to pass their diabetes test?

Oh and BTW, I ALWAYS use the same pen to write down my BG numbers cos I keep the same pen in the case with my bg meter!! So this is not an effective way to flush out or prove a diary is being faked.

How many people actually use a written diary these days not anyway? Aren’t we all uploading to software programmes or using Apps?

Valuable Lesson in Advocacy

I really don’t know why I have to learn this lesson over and over. I think maybe it’s because I’m so focused on one key message when I am advocating for diabetes that I forget I need to explain the very basics of diabetes before I launch into that message. The Diabetes Hands Foundation’s MasterLab Advocacy conference in 2015 was where I heard this lesson for the first time; never assume that people know what living with type 1 diabetes is like. Really like! OR know much about it at all. (Thank you, Stacey Simms (http://staceysimms.com/ from Diabetes Connections Podcasts for that message). It can be a huge oversight because if people don’t know those basics then everything else I say may have less impact.

It’s such a simple thing. Every conversation HAS to start with what diabetes is and what I have to do every day to manage it.

This lesson was reinforced when we went to Leinster House to brief our TD’s and Senators about why people with diabetes needed a better health service. Our two patient representatives, Davina & Rebecca, explained all the blood glucose checks they do, the measuring and calculating carbohydrates and the calculating how much insulin to dose every time in both of their speeches. Among the comments they received afterwards were “I had no idea that you had to think about ALL of those things”, and “there is so much to think about in diabetes”.

Rebecca explained that something as simple as going out for an ice cream, which is a normal thing to do for a teenager, but for a teenager with type 1 diabetes it has to be planned and accounted for with insulin.

These speeches were real eye openers for our audience. And they listened! So the lesson in advocacy that I have to drill into my head is to first explain my diabetes before I delve into what the issue of the day is.

Empowerment and Diabetes - My Journey

Last May, I was asked by the organisers of the Future Health Summit to give a presentation on how I became an empowered person with diabetes. Some friends asked if I could blog about it. The reason for my topic choice was because the theme of the conference was Empowering the Patient, Information, Choice & Accountability and I decided to focus on Empowering the Patient element for my presentation. I feel like I am one, that diabetes does not have power over me, I have a lot of power over it.

The journey towards being an empowered patient didn’t happen overnight, for me. I would like to think that a person with diabetes diagnosed today would find empowerment much quicker than I did. But the two core elements that were pivotal in my journey didn’t really exist when I was diagnosed. Those elements were Diabetes Education & Support.

Obviously my Journey Began with diagnosis 23 years ago - 1993. Diabetes Education was extremely basic in Ireland back then, if it existed at all!

My diabetes management involved;

• Injecting a fixed amount of insulin twice every day

• Eating the same amount of food at the same time every day

• Checking Blood Glucose levels just twice every day

• And I was taught How to recognise & treat a hypo

For those first 6 years I felt like I blindly coasted through my diabetes care. I did what I was asked to but I had no idea why I was doing any of it, except to stay alive.

So what changed? What prompted me to get on the bus to empowerment?

This is going to sound corny but it was love. In 1999, I met this bloke.

Phil

This is Phil. We weren’t going out very long but he already had notions about our relationship and we weren’t going out for very long when he asked me for books or leaflets where he could learn more about helping me manage my diabetes. I was stunned! And for three reasons;

• He was the first person I met who didn’t expect me to educate him on something I barely knew myself.

• That the relationship was moving a bit faster than I had thought and

• that I had nothing, absolutely nothing to give him when it came to information.

What I did have was access to the internet at work. So the next day, during my lunch break, I “AltaVista’d” type 1 diabetes. If you don’t know what AltaVista is, google it! :-D

I couldn’t believe what I found - the list of websites containing information was so long. I found all of these organisations with websites that had tonnes of practical information such as the Joslin Diabetes Centre and the world’s leading research organisation, the JRDF. I had never heard of these places before.

I started reading all of this information before handing it over to Phil and it got me thinking that there might be a better way to live with diabetes. But that thinking got shelved for a while as this journey is not an express route and it required a couple of transfers to reach my destination.

1st Transfer–Diabetes Education

You’ll be happy to know that I, very quickly, realised Phil was a keeper and by 2003, we had been married a couple of years, had moved to US and we were thinking about starting a family. As soon as my endocrinologist heard this he marched me off to a dietitian to learn about counting carbohydrates, insulin dose adjustment and sliding scales.

I had been diagnosed 10 years by the time I found diabetes education which now seems too long. But this knowledge gave me some of the control over this thing called diabetes for the first time. And I felt supported; supported by my diabetes team and supported with knowledge. I didn’t realised it then but my diabetes team in the US was the first I experience of patient centred care.

Family 1

family 2

2nd Transfer–Diabetes Peer Support

The 2nd transfer on my journey towards empowerment was finding peer support.

By 2007, we had moved back to Ireland, had our second baby and I was increasingly frustrated and unhappy with the diabetes care I was receiving. In June of that year I found myself at my lowest point after leaving the most humiliating diabetes appointment I’ve ever experienced. But it propelled me into action. I knew there had to be someone out there who would make me feel listened to.

I went home and remembered a recent newspaper article about a new branch of Diabetes Ireland being set up in Clare. I called the number in the piece and the lady who answered was a fellow person with type 1 diabetes. What are the odds? She had had her second baby around the same time as I had and we were both new to Clare. We instantly connected and during the course of that conversation we realised that we both wanted to meet more people like us and to do this was to set up diabetes support groups.

By the end of 2007, we had diabetes support groups and they continue to be a source of information, motivation and inspiration for me. And they, with some information from Diabetes Ireland helped me find a diabetes team that works amazing for me.

support group

Destination Reached - Person Empowered

This is where I feel my journey towards empowerment was completed. I had reached my destination.

Yes, I took the scenic route to being an empowered person with diabetes. An empowered person with diabetes who can drive her own diabetes. And I became that by finding two very simple, very basic diabetes resources but yet they are not accessible to everyone with diabetes in Ireland.

The first necessity is Diabetes education is as important as giving someone who wants to drive a car lesson and some theory. Would you really put a beginner in the driving seat of a car without it? And not just structured diabetes Education, like the university style of lectures. This education has to be an ongoing 2-way conversational style of learning, where a person with diabetes can grow in confidence, drive their own diabetes and the instructor takes more of a back seat each time.

The second is Diabetes Support and for me that comes from three sources;

• At home - I may be the person with diabetes but my whole family lives with it. The more supported I am at home the more successful I will be in my diabetes management.

• My Diabetes team - My journey has taught me that I need a health care team who listens to me, acknowledges all that I do to manage my care and doesn’t just focus my failings. A team that continues to teach me and a team that continues to learn.

• My diabetes Peers – the most undervalued, underused resource available for people with diabetes today. Who else knows what it’s like to live with diabetes than other people with it. We learn so much from sharing our experiences, so much that can’t be taught in a hospital appointment.

So while my journey towards empowerment has been completed, my life with diabetes journey still continues. And I hope to continue that journey for many, many decades.