Tag: healthcare

This wasn’t easy… My story with Post – Concussion Syndrome

Posted on by thediabetesfootballcommunity in diabetes, Football, sport

To be honest, until I heard Stevie Ward talk about his struggles with Post-Concussion Syndrome on the Mantality podcast I hadn’t even considered talking about this….. Nor was I really ready to share what it’s been like, because to be brutally honest it’s been far from ok.

However, having heard him talk so well about the challenges and how it mimicked so much of my own experience, I felt empowered to get it off my chest as this subject hasn’t been spoken about anywhere near enough, especially within sport. As someone who’s used to dealing with an invisible condition on a daily basis, I thought I’d be relatively well equipped to cope but there was a key difference to this diagnosis from the off. This time I opened up from the off and told people what I was living with, a different approach to my type 1 diagnosis, but ultimately very quickly I was reminded why I adopted that approach before….

When people can’t see, feel or experience what you’re going through they find it hard to believe what you’re telling them. Throughout society there’s a distinct lack of empathy (in my opinion!), that ability to see the world through someone else’s eyes for just a minute. I think it’s a root cause of many many issues across the globe but this is slightly away from my point. It’s also had a huge impact on my life again coping with post-concussion syndrome ( a brain injury!).

I’ve had people almost patronise me, almost can’t believe I’m still talking about, think it’s not that serious, think I’m overdoing it and overall think I’m making a mountain out of a mole hill. Another invisible condition, something else people can’t see through my eyes for a moment and here we go again, another condition with stigma attached.

For me it again just demonstrates why people with hidden conditions like type 1 diabetes, don’t talk about it much in mainstream society. You’re made to feel as though you’re constantly the problem. I hear the lip service paid to the words diversity and inclusion all over the place in 2021 but until individuals become accountable for those words to themselves, how can those things really be achieved?

I wanted to make that point clear, that empathy can make all the difference and if you catch yourself making a pre-judgement of someone, see if you can just take a minute to look at the world through their eyes….. It might change everything.

But I want to talk about what the condition has been like as well, because it’s been awful at times and it needs more people talking about it.

So, since September 2020 I’ve been dealing with symptoms of post-concussion syndrome which started with not much more than being off balance for a header which then came off the wrong part of my head and followed with a number of other knocks in the same game, contributing to an initial concussion. But the concussion wasn’t immediate….

My symptoms didn’t start until 4/5 hours later….. I was just sat in the pub with my friends that evening and I suddenly felt incredibly tired and my brain was a bit foggy, whilst struggling to engage in the conversation around me. Luckily, we all headed off pretty early that night and I got home and went straight to bed not thinking too much about it, other than the fact I was a lot more tired than usual…. Then I woke up the next morning.

The first thing I noticed was that I’d slept for 9 hours without stirring, which is unusual for me. Following that I could tell I still felt extremely tired despite sleeping that long! I felt I could’ve slept another 3 hours easily. Both of these things really struck me… Then the really obvious issues began.

I didn’t quite feel steady on my feet, I mean I wasn’t falling over or tripping but I just felt a bit off, then I had this foggy way of thinking which affected my recall and ability to properly participate in conversation. Ultimately, I was struggling to process information and provide speech as easily as I had found it 24 hours before. I was also noticing that concentration and especially on screens, such as my phone or laptop would really flare up a headache and intensify the throbbing, pressurised feeling I had in my head. Alongside this was a feeling of nausea when I concentrated too much. This was the day after the first concussion.

I then woke up on Monday morning and felt much the same, with things ever so slightly improving but I needed to speak to my GP to understand what was happening. So I managed to get through and speak to them about what I was experiencing and through a telephone triage appointment I was diagnosed with mild concussion, no tests, no examination, all via the phone. As this was my first experience of concussion in my life, the lack of urgency or need to examine me, filled me with a view that it wasn’t too serious, and I’ll be ok in a few days. The advice was to rest and not do contact sport for 2 weeks. If things got worse, I was told to go to A&E to have a scan but as things improved I didn’t feel that it was necessary to do that. The key word was REST in the GP’s advice, but rest looks different to each person and without any sort of definition of what that looked like I chilled out for a few days, took time off work, didn’t really exercise and then gradually incorporated some of that back in, towards the end of the week. The very blasé view given at the start of my diagnosis filled me with an ill-informed opinion of the gravity of the situation and no real insight as to how to approach the next 2 weeks bearing in mind my personal situation. It could’ve been read out of a textbook. I now know that this was a huge mistake but I can’t turn back the clock…. I wish I could.

Needless to say, that 2 weeks after that first concussion I went back and started an FA Vase game. Looking back, I think I knew I wasn’t quite right but with it being a biggish game for the club and me being a senior player, I wanted to get out there and play. When you’re a competitor you always want to be out there. I played the full 90 minutes, we played really well, won the game 4-1 and after initially feeling a tiny bit rough, by the end I was good as gold, or so I thought. I had played the game with no head collisions or challenges and made 6 or 7 routine headers, so I thought I’d probably be ok as a result. But after the adrenaline subsided, the symptoms came on quicker. On the car in the way home (I wasn’t driving!), I could feel that the nausea was there with the fogginess and they were getting worse. This time I obviously knew what it was, so I accepted I was going to feel awful for a few days again and hoped that maybe after a month of not playing this time it’ll go back to normal….

I was obviously wrong… I went back to square -1!

The symptoms were worse than previously and because I was having to work to bring in money, and I wanted to try and keep my mental health in a good place by exercising too, I was struggling with making any progress as I wasn’t getting enough rest. I got better to a point after 2 weeks and then after that I had lingering reoccurring symptoms which affected me on a daily basis. It was worrying, frustrating, frightening and all the other emotions mixed in between.

After continuing like this for a month to 6 weeks, my anxiety about it reached the point where I needed some advice. I rang my GP again, I reached out on Social Media and I looked for anyone who could help. Coupling that with the November Lockdown and it was a really tough place!

I got some good advice and support which has helped to move me forwards and my symptoms have gradually lessened but I’m still not able to work at a full intensity with my exercise and I struggle with continuous screen work as it brings on a throbbing pain in my head and I can feel a little skippy or unbalanced but compared to October/November it’s a world apart. I need to look after myself for a moment and forget about playing sport, this is bigger than that.

But still to this day I’ve not been scanned, examined or seen in person at all regarding my concussion and my memory/ recall is just not as sharp as it was. I hope that one day it’ll come back to something closer to where I was but my recovery is still in progress and even recently took a bit of a hit after too much time spent at a screen working. I thought I was in a place where I was ready for it but in turns out I wasn’t! I heard Stevie say it and I resonate it with so much, the recovery just isn’t linear at all, one day I’ll feel like it’s disappeared and then another I’m really reminded it hasn’t!

I look back now and I know I should have stopped myself playing. I reflect on that every single day. I wished I’d taken things far more seriously and I wish that there was less stigma surrounding talking about brain injuries or mental health conditions within sport. It might have been the difference in me taking the time out to properly rest.

We can’t change that overnight but even if me just sharing this blog post and my experience can help one other person who may be going through this, has gone through this or may unfortunately have to face this in the future, at least through the dark times I’ve been through someone else might take some comfort.

A huge thank you to Stevie for sharing his experience so publicly, which has given me the courage to put mine out there, as writing some of this hasn’t been easy, especially when I’m still going through this. I hope to one day look back at this post and say I recovered. If you have never checked out Mantality before, you should! The work that Stevie and Natalie are doing is shedding a light on concussion specifically and mental health more broadly. It’s a fantastic project and it’s certainly supported and inspired me.

With the premier league recently introducing concussion substitutions and demonstrating a step forward around these types of injuries, more stories and experiences need to be shown as to how it effects everyday lives. It needs more awareness to end the stigma and allow people to feel comfortable talking about something so dangerous.

I have no idea if my Diabetes continues to play a part in my recovery or whether it had an impact in the concussion in the first place, but like with everything I’ve faced in my life, this challenge is one I’ve accepted and will continue to embrace.

I now advocate for Type 1 Diabetes and for greater awareness around the impact of concussion.

I would love to hear anyone’s thoughts on this subject and thank you for reading.

Chris

A summary of some of my symptoms below:

 

  • Immediate symptom: tired much earlier in the evening than I’d ever been before.
  • On and off symptom: Felt a little bit off balance.
  • Continued symptom: Working with screens would really upset my head. Whilst looking at them in the mornings before I’d got going would cause a headache which lasted for hours.
  • An immediate symptom and when I’ve done too much: Felt skippy, turning too quickly would set me off.
  • An early symptom and when I’ve done too much: Pressure in my head and a headache for quite a number of days.
  • An early symptom: Nausea, feeling a bit like being car sick or motion sick.
  • An early symptom and when I’ve done far too much: Foggy, I struggled to connect my brain to the conversation around me.
  • I even got my eyes tested to check that I wasn’t irritating my head with my eyesight.
  • When I exercised or ran too quickly, I’d irritate my symptoms and go backwards.
  • Immediate and continuous symptom: Forgetful – Forgetting names of people I always remembered previously and getting frustrated and worried/upset about noticing this. Just forgetting what I was doing a few days ago or situations I always remember.

The Impact of Stigma on Identity Formation within a Diabetes Football Community… A Research Project

Posted on by thediabetesfootballcommunity in diabetes, diabetes research, Football, sport

For the last 3 and a half years The Diabetes Football Community has been doing its best to be a leader of peer support for sporty people with Diabetes and those specifically with a passion for Football….. As we’ve seen growth, an increase in engagement and increase in awareness there has been widespread acceptance that there is a need for this group to come together, to provide help for a population of people who felt under-supported before TDFC arrived. However, a big question loomed for me from the off…. Why has it taken until now for this group of people to feel supported? And why has the community continued to develop?

In the pursuit of these answers I decided I needed to expand my knowledge and investigate the issue. So, just under 3 years ago I took the decision to study for a master’s degree in Socio Cultural Studies of Sport and Exercise. By choosing this particular path it allowed me to create my own research project which followed the degree’s subject, but in a field I was passionate about. This gave me the opportunity to search for the answers in the hope that I could glean insight which may help alter the narrative that people with type 1 Diabetes have been up against in Football throughout my entire life.

So, I’m really delighted to say that I’ve now completed my degree and am awaiting the final results. It’s been an incredible 3 year journey which has taught me a lot, but in this blog post I want to give a bit of background and discuss some of the reasons why I feel it’s a hugely important step for the community, as well as the concepts and findings which have been presented within the conclusions of the study.

The Why?…

I wanted to provide academic foundations for why this incredible community continues to grow, support and enhance the lives of those who are involved. Academic research remains at the forefront of change globally and I felt this was the right way to try to influence leaders across the globe, into considering how the narrative for Diabetes care should not be completely focussed upon medical enhancements and technology, in improving the lives of those with T1D.

The How?…

The research I conducted involved analysing some of the online content of blog posts, Facebook posts and tweets as well as interviewing several type 1 members of the community who had volunteered their time to support with the project. This allowed me to collect a substantial amount of data to analyse and compare with previously written academic literature.

What was found…

So, the really important bit…. What were the findings? What did the analysis show about our community and how stigma impacts on members of our Diabetes football Community living with Type 1.

Well… there’s plenty to choose from.

As most people would expect stigma towards Diabetes was shown again to impact the lives of those interviewed, whilst also driving the success of particular online content, as posts which were uplifting, dispelled stigma and provided education against it, were all highly viewed and extremely important to community.

I don’t think that would come to the surprise of many involved in TDFC, however the strong feelings of discontent surrounding type 2 related stigma imposed upon those living with type 1 was an area which I was a little surprised by. The feelings demonstrated were strong and it may have something to do with the particular field the study was focussed in, Football. With Football an unforgiving sport, where weakness is often exploited and ostracised you can potentially see why some of the participants felt strongly towards a stigma bestowed upon them which doesn’t actually represent what they live with. Yet, in their eyes it affects how they could go about their business on a Football pitch or Futsal court.

But it’s there on that very Football pitch or Futsal court where one of the most surprising findings from the study really comes to fruition…

As I’ve already mentioned, the show no weakness culture, masculinity and macho approach that’s embedded in Football really pushes players to hide anything that could be perceived as a weakness by fans, players, coaches or the media. This is why for example there’s not a single player in any professional Football league in England who has come out as gay for example… It’s a perceived weakness which goes against the image of masculinity and strength within the sport so therefore must be hidden. In all other parts of society that stigma is beginning to break but in Sport it still remains, and I believe that it forms the basis of why those in our community, who strongly identify themselves as a footballer, hide the fact they live with T1D. In using secrecy as a coping mechanism for avoiding stigma, academic research has demonstrated that this may increase the likelihood of poorer self-management and thus health outcomes. This is a highly significant finding because for the first time I’m suggesting, with support from the research, that the culture of the sport I’ve grown up with may have a detrimental impact on my health, as a result of the culture within Football, which depicts difference as weakness and ultimately attaches it with negative stigma.

So, with greater identification towards football, you’re more likely to hide your condition, and in hiding your condition you’re less likely to do the right things to self-manage it. With this academically evidenced throughout this study it’s a finding which really needs much more investigation to test its transferability. Nonetheless, when I consider my own experience as young person growing up with the condition, this finding resonates very closely to my experience. I love the sport I’ve played but I now question the impact that it’s had on my mental health, choices and behaviours.

However, there are also questions that stem from this which could really open the door for some interesting exploration. For example, is this just as a result of the Football culture, a team sport surrounded by mainstream players, traditionally with a working class – middle class background? Does it differ with other team sports such as Cricket or Rugby, where the tradition of the game may encourage a different culture and demographic background? Could we also consider a difference between Men’s Football and Women’s Football? Is there a cultural difference between the genders?

But then what about individual sports? Is this an issue which disappears or lessens in individual sports because there isn’t the need to hide from teammates, coaches, referees and opposition players what you need to go through to get out and play? Would we see a different view from a T1D Tennis player, Golfer, Badminton player, runner or cyclist etc?

Although the evidence of the study suggests a significant challenge for those with T1D accessing a sporting culture where weakness is shunned, I do think we’ve seen an opportunity in the findings to help alleviate some of that strain. It’s not all bad news!

This mechanic we’ve created through TDFC has helped to bridge the gap in identification for this population. Building identity with diabetes is important, it helps psychologically, socially and with the eventual medical outcomes for the condition. The research is out there evidencing this but in what we’ve created we’ve potentially helped people identify with T1D who otherwise may not have done. Those people have been so keen to keep it secret because of their life’s interests and passion in Football specifically, that actually by linking their passion to the condition we might have helped gain their attention enough to identify themselves with T1D, seek out others with their condition and ultimately receive help which betters their self-management.

Combining this with the use of Social Media as our prominent tool for communication actually increases this likelihood too. Through Social Media you can view content, see what people are up to and get support from posts without anyone else knowing you’re looking. This ability to temporarily and intermittently identify with T1D is something I would guess has happened a lot. In these moments the individual can see the benefits they may get from associating with the community, talking to others who share their passion within it and begin to develop their identity with the condition that in the long run, I certainly believe and so does the academic literature, will impact positively on self-management.

It’s no secret the positive impact that peer support has for people with T1D, this has been evidenced for years with strong support for it in this study too. However, if you have no inclination to seek out others, or no reason to identify with your condition because your favourite thing in life actively tells you not to, how on earth would you find it? You wouldn’t. So, this study really for the first time suggests we need to create a positive affiliation to draw people to their condition and break down some of the stigma for those who find it hard to identify with T1D. Without that, peer support is not able to cut through to those who may need it the most. It has a hugely significant impact on people who partake in this kind of support but why isn’t everyone doing it if that’s the case? I think this is an area and idea which may help to uncover some of that why….

Peer support is an incredible tool that buffers against stigma but another area that comes through strongly in the study is the idea that personal experiences in life and of stigma are a key driver in identification with T1D. I think for this population of people they are more likely to experience stigma as a result of their decision to put themselves in an environment where their condition is far from embraced, actually actively shunned. Only 2 weeks ago did I experience a pretty obvious stigma related slur, and in the last year I’ve experienced stigma on 3 different occasions all of which were related to Football/ Futsal. I don’t think it’s a coincidence.

This population struggles to come to terms with their condition in the face of it. Which is why TDFC has grown, expanded and continues to do the good it does. Because it tackles and dispels stigma whilst providing a positive view of our condition, which for the first time in our lives is celebrated rather than shunned. THIS is why TDFC has been successful. I knew the reasons deep down but now I’ve taken the time to research it and understand it from a social and cultural perspective, I believe my view of our direction is far clearer for the future, whilst I really hope it can help to influence decision makers within Diabetes care to look at niche populations in greater detail, and more importantly on the impact of stigma on self-management. I’d like to appeal to the Diabetes academic community to really consider this area in the future…. The below link shows a recent poll I ran to get a feel for how it’s affecting behaviour/choices and I think the results speak for themselves:

https://twitter.com/chrisbrighty1/status/1295416282695770116?s=21

With only really the Australian Centre for Behavioural Research in Diabetes (ACBRD) focussing in on this area globally, it needs more. I might add they’re doing a fantastic job with it and a number of their papers heavily influenced my thinking, but they can’t be the only institution driving this.

Evidenced in my study and on the TDFC website is the impact the community has had on altering behaviour positively. We’ve achieved identification with T1D for the first time in this population. Which I firmly believe has resulted in an upturn in the psychological and Hba1c measures that have been achieved within this population. This wasn’t achieved through the traditional models of care provided by Doctors and Nurses but through a new innovation which championed a new way of looking at the condition. Now this is not to diminish the contribution of our incredible Diabetes teams but rather to say, there’s more we can achieve, if we work closer together.

The overall outcomes of a condition determined by self-management is far more holistic than looking only to the medical professionals who support us for the answers. Sometimes, the answers come from ourselves, our choices and our behaviours…. Which may have been influenced.

I hope the blog gives some real insight into what I’ve been working away on in the background to try to drive change for our community as well as raising awareness of why TDFC is a special project.

Throughout all of this it’s important to know that TDFC stands right there beside our NHS and healthcare workers across the globe in trying to make life easier for people with Diabetes. We couldn’t do it without you and I hope we can help you more greatly in the future.

I must say a huge thank you to those who have shared the last 3 years of my journey and the research, projects and teams I’ve been a part of at the University of Worcester. Whilst I can’t forget the contribution of both the University itself and my supervisor Dr. Gyozo Molnar. Without their support it would not have been possible.

If anyone would like to discuss the study with me, its findings or any future collaborations with TDFC please do get in touch via email:

thediabetesfootballcommunity@gmail.com

Thanks for reading,

Chris