1 Hour of Diabetes Stigma

So, the title of this one doesn't sound like a barrel of laughs. I know, I know, stigma and diabetes gets more airtime than Phillip Schofield and a full hour of it? Relax! Unless you're really slow at reading, this blog post will not take an hour to get through.

We're all good now, aren't we? Cool. 

A few weeks ago, I asked a question on Twitter along the lines of "Have you ever searched 'Diabetes' on Twitter?" A simple question. Some of you actually did that, some of you knew what I was getting at - It's horrendous. 

Stigma comes in many forms, of course. Some of it is well meaning "advice", some of it is terrible, upsetting, bullying, stigma breeding trash that really has no place on any platform. Yet, it's 2023 and here we are, social media is a heaving cesspit of diabetes stigma. A wall to wall misinformed, Facebook researching, pile of turd.

I'm not happy about this, can you tell?

So, to fuel my fires further, I performed the Twitter search for "diabetes" once again, yesterday. I decided to check the latest tweets, the tweets from the last hour. Of course, you might perform this search after reading this blog post and find entirely different results. However, for the purposes for this blog, I'm going to show you nine tweets which were sent in that hour.  On average, that's a tweet every 6 and a half minutes.

Ready? Deep breaths. Let's start with this cracker:

Diabetes in a cup. Your number one, alongside 'Diabetes on a plate', in Diabetes Stigma Bingo. Ooh, this is so tiresome and it's been repeated a million times. "Sister" was probably trying to be witty. 1985 left a voicemail, they want their diabetes joke back.

Mild diabetes. What? Mild diabetes? Loverboy got lucky with a mild dose. I've had the severe version for 38 years. Still, great that he warned us about this rather unusual way of getting diabetes - from watching a Ben & Jerry's TV ad'. Is nothing safe?! 

Looks like diabetes. Nope, it doesn't.

All Y'all diabetics, y'all. Fortunately, he clarified that cookies giving people diabetes was just a joke. All fine and not be blind at all... y'all. 

So sweet! Diabetes stigma bingo is back with this classic. I don't know what was so sweet. Maybe it was an ableist piece of trash falling down some stairs into a pile of horse manure?

Diabetes. Great try, DJ! You're wrong, but for trying so, so, hard to be funny you win a Donut. Oh, wait!...

Type Socks. I think this is my favourite one. Veinexes keeps those socks on despite it meaning getting diabetes. I like warm feet in bed, but i'd probably pass on toe comfort to be diabetes free. Still, now we all know the true cause of diabetes. Scientists, you can work on something else.

*Update. This looks like a typo/autocorrect of the word because or cos. The reply makes more sense when read that way. 

Cosmic Diabetes. Far out, dude. Diabetes from across the galaxy. Alien diabetes is probably easily managed with a ketogenic diet, lots of cinnamon, praying and an anal probe.

DiAmazonetes. Bernard, here, absolutely soiling himself laughing at his own gag. Ah, Bernie you old rogue! You cheeky, ableist, stigma breeding, piece of... IBS kicking in again. 

Alright, that's enough. Most of these idiots probably didn't mean any harm, they're just... idiots? Although, I'm not sure about the socks person - that's really freaked me out. I love socks. I should really end this post with a serious point. I think you've understood my point. That's a lot of stigma in a short space of time from various different idiots. 

Can it be stopped? No. At least not until there is proper regulation of social media (one person, one account, verified with ID, additional accounts listed openly). That would reduce the other horrible hate tweets, too. It would also reduce tweet impressions and hurt the income stream of the platform. Hmm, a tough one. Reduce harm and revenue or continue with the status quo. How important is money over human well being? Over to you, Elon.

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The Darkest Hour

Mental Health Awareness week is coming to an end and, for the first time really, I've been quite active about raising awareness of mental health issues on social media. During the last week, I have read about the issues faced by others within the diabetes community. I have also had several conversations with fellow diabetics about their mental health and shared my own thoughts in turn.

During a couple of conversations, diabetes related complications became the subject. It seems very reasonable to be fearful or anxious about complications, whether you've experienced them personally already or you've simply heard about them - yet managed to stay complications free. These particular conversations were on a mentor to mentee basis (I help to mentor a handful of people living with T1D) and so it wasn't appropriate for me to use that time to fully open up about my experiences. Some of my mentees pay for my time and it's important to focus on their issues, rather than drift off into my experiences. However, as we touched on some aspects of mental health in relation to diabetes complications the memories came flooding back.

Before we tuck into the main course of this blog post, I'm going to put a trigger warning here. Below, I will be writing about diabetes related complications, depression, and suicide. So, if you're upset by those subjects or they trigger you in a negative way, then please close this window and drop by again later for another blog post. Thank you.

Type 1 Diabetes had never really impacted upon my mental health. I'd had the condition for around a quarter of a century, from childhood until my early 30s, and although it was a massive annoyance and it nearly killed me a couple of times it wasn't affecting my life much. I'd been married, had two children, I was working for a TV channel in London, drove a fancy car, and I was flying around Europe to play poker tournaments. Much more was going on at that time, too! Needless to say, I was enjoying life and I didn't have much time for diabetes. My autobiography will tell you about that time.

Diabetes got angry at my ignoring of it. It'll do that, it's very needy. As my vision began to change, as little black dots appeared, as things became more and more blurry, I knew that I couldn't keep my head in the sand forever. I'd already been diagnosed with retinopathy at that stage. If you've read my previous blog posts on the subject, you'll know the story from then on. 

What I haven't ever spoken about is the affect that this period had on my mental health. Sure, I've joked that it was "a pretty dark time" but that's about it. The truth is that it was a terrible time. Once the initial feelings of anger, self-pity and guilt had subsided, I felt an overwhelming sense of hopelessness and that didn't disappear very quickly at all. It took many operations and around 18 month - 2 years of my life until I found some hope again. 

The title of this blog is The Darkest Hour. When I think of this time, many hours were dark (stop with the puns!) yet there was one particular time when I had firm plans to end my life. I am sorry to my friends and loved ones if reading that upsets you. The time frame is a little hazy, but it was around a year into my life as a very, very, visually impaired person (almost entirely blind). I'd had several operations on one eye with very limited success and no "work" had taken place on the other one at that stage. I considered what the future held for me, what had been, what I'm currently missing. A spiral of depression began and I became comfortable in planning my demise. So much so that I told a trusted person of how long I'd be waiting before calling it a day. That time was approx' a month after my next operation. I figured I'd give some time for things to settle down after the op, talk to my surgeon about what could be done from then on, and if the situation was to stay the same then I'd go through with my plan. 

Losing my sight was devastating, but it was also the fact that it was happening to me in my 30s. I imagined what might happen in my 40s, 50s and beyond. I had no intention of slowly decaying and putting my family under the stress of witnessing that and caring for me. I won't be writing about my plans to die in any detail in this blog post or anywhere else. I'm absolutely not here to put plans into heads.

I'm still here, in my 40s, so you already know that things changed for me. I remember that day as clearly (pun?) as any in my life. After getting the thumbs up from my surgeon, I could look my children in their faces and see their eyes and their smile. Everything changed. Oh sure, I've made monumental balls ups of many things since that day in 2012, but I've become more appreciative of life, more understanding of the desperation felt by others when life becomes intolerable, more respectful of diabetes and more engaged about my own health.

So, here's a thing; I was wrong. Wrong to make plans to end things, but in hindsight I understand why I was in that position. What I needed was support to help me deal with the devastating news and the long period of time as a severely visually impaired person. What I got was a meeting with a blind persons charity, in the eye clinic waiting room, surrounded by many other patients. That was followed up with a home visit to ask what I needed in a practical sense for living at home. I was given a talking blood glucose meter. Cool, thanks. No psychological support was offered.

I feel very lucky. The brilliance of my surgeon saved my sight and, in the process, my life.

I've been wondering how to end this blog post without sounding patronising and without doing the "My DMs are open, message me if you want to talk" virtue signalling nonsense. How about this:

If you're in a bad place with your mental health, diabetes related or otherwise, hold on. Life is long and sometimes things can take what seems like ages to change. You may feel that change is impossible, even if change means you must adjust to new circumstances, but it will happen and you can adjust. Seek the right help to support you. You'll need professional organisations and possibly psychological help. Be honest with your family and trusted friends.

You might also benefit from just talking. There is no shame in feeling depressed, anxious or even suicidal and when it comes to diabetes, we got you. I got you.

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It's Complicated

 

A lot of subjects revolve around Type 1 Diabetes. Many of those are routinely spoken about at your clinic appointments, with your peers, on social media, etc. That's a great thing! Reading about some diabetes related subjects might help you with your own management or, if you decide to verbalise your own experiences, you could be helping others. It's a win-win situation as far as I am concerned. 

I know some will have issues in reading or hearing about the scary aspects of diabetes. I spent a good part of my life avoiding those subjects at all costs. Even when one of the most scary, diabetes related complications, came to visit me personally I decided the best course of action was to put my head in the sand. That was a poor choice, of course.

Living with type 1 diabetes can be challenging, and there are several potential complications that can arise as a result of the condition. I believe that it's important to talk about these complications openly and honestly, without blaming or shaming people with diabetes. Stigmatising language and attitudes can be harmful and can make it more difficult for people with diabetes to manage their condition.

Let's take a look at some of the most common complications associated with type 1 diabetes:

- Diabetic ketoacidosis (DKA): DKA occurs when the body starts breaking down fat for energy instead of glucose, leading to a buildup of acids called ketones in the blood. This can be a life-threatening condition if left untreated.

- Hypoglycemia: Hypoglycemia, or low blood sugar, can occur when a person with diabetes takes too much insulin or skips a meal. Symptoms can include shakiness, dizziness, confusion, and even seizures. We talk about hypos within the diabetes community quite often yet, still, some find the subject embarrassing.

- Neuropathy: Over time, high blood sugar levels can damage the nerves in the body, leading to numbness, tingling, and pain in the hands and feet.

- Retinopathy: High blood sugar levels can also damage the blood vessels in the retina, leading to vision problems and even blindness. I know this particular one very well. 

- Nephropathy: Diabetes can also damage the kidneys, leading to a condition called nephropathy. This can progress to kidney failure, which may require dialysis or a kidney transplant.

It's important to note that not everyone with type 1 diabetes will experience these complications, and managing blood sugar levels can help reduce the risk. However, even with the best management, complications can still occur. That's why it's essential to have open and honest conversations about these potential complications and provide support to those who are managing the condition.

Unfortunately, people with type 1 diabetes often face stigma and blame for their condition, which can make it even more challenging to manage. Some people may assume that diabetes is caused by poor lifestyle choices, such as eating too much sugar or not exercising enough. However, this is not the case with type 1 diabetes, which is an autoimmune condition that cannot be prevented or cured.

Stigmatising language and attitudes can make people with type 1 diabetes feel ashamed or embarrassed about their condition, which can prevent them from seeking the help they need. It's important to talk about type 1 diabetes in a way that is respectful and understanding, and to avoid placing blame or shame on people who are managing the condition. 

There is often much talk between diabetics about the language used about our condition. Even the use of the word "diabetic" causes some to feel uncomfortable, much as the clumsy "PWD" does. I've repeated this many times previously; We're all very different. The use of some words and phrases doesn't cause me any upset and I believe that to be commonplace among other diabetics. 

What does cause me upset is the stigma surrounding complications. And not just because I've lived through several different eye problems. Indeed, I haven't felt stigmatised in any way for my diabetes related complications, but I know that others have and I know that many others fear talking about their own complications due to the reactions of others. That needs to stop. 

Through my own engagement with the online diabetes communities, I've learned much about my T1D. I've improved my diabetes management and probably given myself a much better long term outcome. If we open the door to discussing complications, normalise the subject, provide support through communities and peers as well as directly in clinic, then I firmly believe we can lessen the severity of complications in many. Why? because fewer will think twice before asking a question online, fewer will be worried about approaching their doctor for advice, the early stages of complications can be picked up on and stopped or slowed down before they become severe.

So, if you've got complications concerns, a question, experiences to share, etc then hit your socials. There are many who will support you and benefit from your engagement. If you experience negativity, use your mute or block buttons. 

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Diabetes Abuse

 

Living with diabetes can be a challenging experience, and connecting with others who understand what it’s like can be incredibly beneficial. However, as with any community, there can be issues that arise, including abusive behaviour. Unfortunately, even within the diabetes community, there are people who engage in abusive behaviour towards their fellow diabetics. This can take many forms, from bullying and shaming to outright harassment and intimidation.

It’s important to recognise that abusive behaviour is never acceptable, regardless of who is engaging in it or why. No matter how frustrated or angry someone may be, it is never okay to take that out on another person, especially someone who is dealing with the same struggles that you are. In fact, engaging in abusive behaviour towards other diabetics is particularly harmful because it can undermine the sense of community and support that is so important in managing diabetes.

Here are some of the reasons why it’s essential to not accept abusive behaviour within the diabetes community:

• It undermines the support system

One of the most significant benefits of the diabetes community is the sense of support and understanding that it provides. When you connect with other diabetics, you can share your experiences, exchange advice and tips, and find comfort in the fact that you are not alone. However, when abusive behaviour is present, it can erode that sense of support and understanding.

People who are subjected to abuse may feel isolated and alone, as if they have no one to turn to who will understand what they are going through. This can make it more challenging to manage diabetes, as the support that they would usually rely on is no longer available. It’s essential to create a safe and supportive environment within the diabetes community to ensure that everyone feels comfortable seeking and offering support.

• It can have negative mental health consequences

Abusive behaviour can have a significant impact on mental health. For people with diabetes, who already have to manage the stress and anxiety that comes with living with a chronic condition, this can be especially harmful. Abuse can lead to feelings of shame, guilt, and worthlessness, which can exacerbate existing mental health issues or even lead to the development of new ones.

It’s crucial to prioritise mental health within the diabetes community, and that means not accepting abusive behaviour. People with diabetes need a supportive environment where they can feel safe discussing their struggles and seeking help when they need it. If abusive behaviour is present, it can make people feel even more isolated and alone, which can be detrimental to their mental health.

• It perpetuates harmful stereotypes

Unfortunately, there are still many harmful stereotypes and misconceptions about diabetes. Some people believe that diabetes is a result of poor lifestyle choices, and that people with diabetes are lazy, unmotivated, or lacking in willpower. These stereotypes are not only untrue, but they are also harmful and can contribute to the stigma that people with diabetes face.

When people within the diabetes community engage in abusive behaviour, they are perpetuating these harmful stereotypes. By shaming or bullying other diabetics, they are essentially saying that they believe these stereotypes are true, and that people who struggle with diabetes are somehow to blame for their condition. This can be incredibly damaging, both to the individual who is being targeted and to the community as a whole.

• It creates an unsafe environment

Abusive behaviour can create an unsafe environment within the diabetes community. People who are subjected to abuse may feel uncomfortable attending diabetes-related events or engaging with others in the community. They may feel that they are at risk of being targeted again, and that they have no recourse if that happens.

Creating a safe environment within the diabetes community means ensuring that everyone feels comfortable and supported. No one should feel as though they are at risk of being targeted or harassed. When abusive behaviour is present, it can undermine that sense of safety within the community.

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Diabetes and Blood Pressure

You don't need to have diabetes to know that blood pressure is a thing, an important thing! High, low and somewhere in between - you've most likely had your blood pressure checked at some stage and learned of the results pretty quickly. Me too! I submit to an arm squeezing at every appointment, In fact, I'm pretty sure that I had my BP checked at my pump set up appointment because... I don't know why. It just happened along with my height and weight. Glad to know I'm not too fat or short for pump funding! Phew! There is probably a NICE criteria for that.

BP at appointments, yes! let's focus on that one. I'm one of those "White Coat Syndrome" types. I know that's not the official name for it. Language Matters probably covers it under "Person with anxiety of medical professionals wearing light coloured lab coats" However you describe it, I have it. I think it stems from a real fear of attending my diabetes reviews as a child. If I wasn't passing out from the blood tests, I was being told off about my control, threatened with trips to the amputation ward or working extra hard on my blood glucose diary fiction for the last 90 days. It wasn't a great experience and it stayed that way for a long time.

Medical appointments, I suspect, are not designed to be fun. Today, they're less stressful but they're still not a day out with friends for a lovely lunch and a drink or two. They usually involve losing some of my blood and urine to a stranger and the fear of some terrible news lurks in the back of my mind at each visit to a waiting room... which is always too warm and always contains some absolute knob, coughing up their infectious disease in my face. I'm going off on a tangent. You get my drift, I'm sure. 

Those settings appear to be unwittingly designed to increase our anxiety. For me, that appears to translate into elevated blood pressure, almost every time without fail. I've left many appointments with a rented BP machine tucked under my arm for home readings. On at least one occasion I took 24 hours worth of readings. More commonly, I'm asked to provide 7 days worth of home results. And I do! Of course I do. And they're always normal / within a healthy range or near to it, such as this one from last night:

That's reassuring, of course! I have enough to contend with without hypertension coming out to play. However, it's becoming a little tiresome to be told that my BP is "a bit high" in clinic when it's the clinic setting causing my numbers to nudge up. As is my want, I vented about this on Twitter only a week or two ago. David rightly noted that not only do they check for BP on these machines, they also check for irregular heart beats. I'm pretty sure that my home monitor (above) doesn't offer that function. I'm good with heart checks. We're often told that T1D can increase the chances of heart disease so, it makes great sense to have that particular organ checked out. Blood pressure can give our kidneys something to think about, too on top of the work T1D gives to them.

BP in clinic, though? I'm not alright with that one right now. I'll be providing my own readings and requesting that any taken during a heart check are ignored and not noted. That's going to be an interesting chat with that HCP, isn't it?! 

We check our blood glucose a lot through CGMs and finger pricks. We try to keep it in a healthy range because that reduces our chances of diabetes related complications. Blood pressure is very important for many aspects of our health, too. I believe that frequent monitoring of BP should be seen as an essential aspect of T1D care but that frequent monitoring should be done in our usual day to day environments; home and work. Unusual settings, such as diabetes review appointments, are not places to obtain reliable blood pressure readings. 

Blood pressure monitors are relatively cheap these days. It seems unlikely that the NHS would fund BP monitors for all diabetics so, if you can afford to pick one up, I do recommend getting one for a useful and accurate picture of your blood pressure.

And relax!

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Type 1 Diabetes and Sight Loss

 

I am often asked about my sight loss in relation to my T1D. How it came about, how I adjusted, acceptance and advice are often subjects of conversation and I'm very happy to discuss. Complications are a thing for some T1Ds and we shouldn't avoid the subject. Here's a little about my diabetic retinopathy without too many gory details. 

As a person living with type 1 diabetes and sight loss, my journey has been filled with challenges and triumphs. I was diagnosed with type 1 diabetes at the age of 8 and experienced some eye complications due to high blood sugar levels at age 31. Eventually, my eyesight started to deteriorate, and I was diagnosed with diabetic retinopathy.

The diagnosis was devastating for me. Losing my sight meant losing a part of myself, and I had to come to terms with the fact that my life would never be the same. I had to learn new ways of doing things, like cooking, cleaning, and getting around. It was difficult, but with the support of my family and healthcare team, I learned to adapt. I haven't lost all of my eyesight, but enough to be registered as blind. That feels like a very strange thing to type because I'm not blind. If you've met me, you've probably noticed that I can get around pretty well. Indeed, my sight is as good today as it's ever been since my retinopathy diagnosis. I prefer "visually impaired" when describing my sight loss as that's more accurate. Although, some hear visually impaired and automatically assume totally blind - for me that's far from correct. 

One of the biggest challenges I faced was managing my diabetes and my vision loss. I had to learn how to measure my insulin doses, check my blood sugar, and administer my insulin injections without relying on my sight. It was a lot of trial and error, but I eventually found a routine that worked for me.

Living with sight loss and type 1 diabetes has also taught me the importance of self-care. I've had to make my health a priority and take care of my body in ways that I may not have otherwise. I make sure to exercise regularly, eat a varied diet, and keep up with my doctor's appointments to prevent any further complications.

Despite the challenges, my journey has also been filled with triumphs. I've been able to pursue my passions, like diabetes advocacy, writing and public speaking, and inspire others living with sight loss and diabetes. I've learned to appreciate the little things in life, like the sound of birds chirping or the feeling of a warm cup of coffee in my hand.

Living with sight loss and type 1 diabetes is not easy, but it has taught me resilience and strength. It has taught me to never give up and to always find a way to overcome obstacles. I hope that my story can inspire others living with these conditions to keep fighting and to never lose hope. If you get a diabetes related eye complication then it's alright to be fearful, angry, upset and even depressed. Nobody wants that news, but know this; most eye complications can be easily treated and needn't be as severe as mine if you attend your appointments and follow the advice you're given. 

I have written other blogs on this subject with more detail regarding surgeries and treatments. Take a look through my posts and have a read if you're interested in that. 

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The Importance of Diabetes Community

It has been around six years since I took a deep breath and pressed the record button on the video app of my phone. I blundered through an introduction video, deleted it, wrote a script, blundered through that and deleted it. Eventually, I decided on something that was a few minutes long and sent it to my YouTube channel. Of course, nothing happened. It did get a few views! Really... just a few, but that was enough to inspire me to make more and seek out others who live with Type 1 Diabetes. I'm so very glad that I did.

The last six years have been eye opening, jaw dropping, heart wrenching, gut churning, annoying and, most importantly, absolutely wonderful. The good, the bad and the ugly have all visited my social media accounts. The vast majority of the visits have been good and that's why I'm writing this new blog post. The good has had such a profound effect upon my diabetes, my outlook, my social life and my confidence. The good comes in the form of community.

I think it's only fair that I start with GBDoc. You probably knew that was coming! But, what a remarkable community of people and such longevity! GBDoc has been around for far longer than I have in diabetes social media, over a decade apparently. It has had many guises, many volunteers, a few leaders, thousands of members, several platforms, a website, controversy, love, hate and friendship. Sometimes, it feels like Eastenders with boluses - only the acting is better and the story lines are more interesting. Drama aside, the support and information from GBDoc has been incredible. I wonder where I might be in my T1D journey without this community? Where might you be? I suspect much worse off, maybe less knowledgeable, struggling for tech access, more isolated...

...GBDoc isn't the only diabetes community. Different countries have their own communities and that makes perfect sense as healthcare, access to meds and tech, societal differences, etc can differ hugely between nations. Some communities try to cover a global "scene" and that's cool too. From other people, other countries, other values, other uses of language, we can learn a great deal alongside (for me at least) helping to recognise privilege.

Communities are very fluid places. As time passes, people come and go perhaps because they have gained the help and information they need, perhaps they didn't get what they expected, maybe they died! Many reasons can cause the disappearance of an individual from an online community just as many reasons can bring about new faces. 

In my six years of community engagement I have gained so many friends - I really couldn't list them all without forgetting a few. Some have been friends for almost the entire six years and I hope they remain so for the rest of our days. Some have drifted away, a few decided to not be friends at all after a while. That seems like very normal human behaviour and I'm quite accepting of it. Community makes friendship easier to develop and blossom. If you're feeling isolated and lonely with your diabetes then the community could be the answer.

 Away from being bestie mates with lots of new people, your diabetes could benefit hugely from community engagement. Hybrid Closed Loop (not an artificial pancreas) looks likely to be a hot topic for the years ahead in the UK. Yet, most diabetics are not using that technology right now. That means a lot of learning and understanding is on the horizon for people who may want to try HCL (criteria dependant, naturally). The same was true of Libre, CGMs, Smart Pens and Insulin Pumps - less complex than HCL, perhaps, but the usage experiences of peers have proved invaluable to many.

So, you've got new friends and new tech. Now what? Maybe you struggle with the mental burden of having diabetes? Maybe you've heard of talking therapy? That's exactly what a community can offer. Put your grown up pants on and start talking, tweeting, posting, whatever! You'll be surprised at who understands your issues and reaches out to offer an ear. And it helps! To not feel alone in your struggles can ease your burden even if no immediate solution is found. What is the old saying about a problem shared is a problem halved?

Do you need more? Well, community doesn't always mean serious. I've had some hugely fun days out with my friends from GBDoc, we play quizzes, fantasy football and cruel but funny practical jokes on each other! Other skills are shared via a Stitch Club. Books are read at the same time, films and TV shows via watch-a-longs, hobbies and interests shared and enhanced because of new diabetic friends who just enjoy the same things. Maybe you enjoy gaming? gotcha! Art? gotcha! The list of interests is huge and you'll likely find someone who enjoys the things that you do with no relevance to diabetes apart from being in the wonky pancreas gang.

By the way, serious can also be lovely. Some friendships have developed into more and dating, even marriage, has happened. 

If life dealt you a bad hand with diabetes, you can still win the pot if you play your cards right. I'm turning into Bruce Forsyth. Good blog, good blog. 

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