• Why Does It Take So Long To Get Diagnosed With A Chronic Illness?

    A cartoon snail is saying 'even I am faster than the medical system.' The caption reads, 'We know it takes 5-10 years to get diagnosed with a chronic illness but why does it take so long?'
    we know it takes between 5-10 years to be diagnosed with a chronic illness but why does it take so long?

    Research shows us that it takes between 5-10 years to get diagnosed with a chronic illness. Some stats for specific conditions are: 

      • Ankylosing Spondylitis – Research shows that it takes 1/3 of patients up to 10 years to get a diagnosis. 
      • Psoriatic Arthritis – For 30 percent of PsA patients, it took more than five years to get diagnosed.
      • The average time to diagnosis for patients with rare diseases is 7.6 years in the Untied States. 

    But what is the driving force between these wait times? Surely not every doctor is useless at diagnosing more complex conditions?

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  • The Data Gap That’s Killing Us

    A cave man is waving his club in the air. There is an arrow with a caption that says 'not so average man' the caption reads, the data gap that's killing us
    the data gap that's killing us

    We all know about the gender pay gap but how much do you know about the data gap? 

    In science the white straight male is used as the ‘average’ human. He’s the reason why supermarket shelves are built too tall for most people or why in a car accident you are 47% more likely to get seriously injured (more on this later). He is used as the starting point for all science and it’s seriously affecting everyone else. ⁠

    If we looked at the world as 100 people, it would be a 50/50 split of men and woman and 80% of those people would be non white and 20% white. So what we are using as the ‘average’ would only represent 10% of the population!⁠

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  • How To Make A Complaint About Your Medical Provider

    A cartoon blood droplet is dripping out of a needle. It's saying 'who you gonna call?' the caption reads, 'How to make a complaint about your healthcare provider'
    How to make a complaint about your healthcare provider

    This week I’ve been looking at how you make a complaint to your health care provider. 

    Surprisingly many people don’t know they can actually make a complaint about the treatment they receive. Like many things with chronic illness this is yet another thing you don’t get told about. So let’s break it down!

    There is such a thing as Patient Liaison Teams and they work across the country in GP practices, hospitals and even dentists! They know all the local support groups, work closely with medical professionals and even can help you with understanding your treatment. But most importantly they are who you can go to to make a formal complaint. ⁠

    But why would you want to? ⁠

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  • There Is A World Of Difference Between Knowing It’s Not Your Fault And Feeling It’s Not Your Fault

    Caption reads, 'There is a world of difference between knowing it's your fault and feelings it's not your fault'.

    At some point along your journey I hope that someone has told you that your illness is not your fault but how much do you actually feel that? 

    Our brains are designed to analyse information and make meaning out of the chaos that is life. When something as big as chronic illness happens it’s very hard for the brain to compute that there isn’t something that we can do to control the situation so we turn it inwards. 

    We see this in trauma work time and time again. When an event is too big for the brain to process that’s when the narrative of self blame crops up. ⁠It is easier for us to blame ourselves than it is to accept that there is nothing that we can do to change the situation.

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  • Fog Of The Brain

    Two cartoon ghosts who have blank expressions. In the middle of them is a caption that reads, 'fog of the brain'
    Fog of the brain

    So it’s been a hot minute since we last spoke and a lot has happened in that time. Don’t worry though this is a completely C word free newsletter! (A rarity in this day and age!!)

    Over on the ‘Gram I have been speaking about the ways in which brain fog affects me and the shame that I feel with that. Some of you might not know (or you suspect from my terrible spelling) that I am heavily dyslexic. So much so that I couldn’t read or write properly till I was 7. With that there comes a certain level of shame, having been told for many years that I wasn’t as intelligent as other kids (which is completely wrong BTW).

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  • Inappropriate Questions

    there is a speech bubble saying 'what's wrong with asking?' a cartoon mouse is shrieking in despair 'where do I even start?' and the caption says 'inappropriate questions'
    Inappropriate Questions

    AAAAAARGH inappropriate questions! Where do I even start?

    We get them day in and day out and the worst part is always that the askee never understands why it isn’t ok. Sometimes we are too tired to educate people, others we just don’t have the time but how do we get this information across so we stop butting up against this? 

    It’s no secret that my personal opinion is representation. Books, TV and media are an excellent gateway for people to learn about experiences different from their own but having worked in the TV industry I also know the uphill battle that we still have to fight. 

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  • I’m Just A Girl Looking At Her Medication Asking It To Work

    A cartoon blonde haired woman is wistfully staring at a caption that says 'I'm just a girl looking at her medication ask it to work'
    I'm just a girl looking at her medication asking it to work

    Oh medication, having been around free range humans (aka those who are not housebound by chronic illness) I’ve been reminded of how much they cling to the idea that medication can fix everything. That when you get sick the doctor’s hand you pills that magically make it all ok again. 

    Any one who’s been chronically ill for more than a hot minute will tell you this is not the case. That medications come with their own issues and some of them are indistinguishable to the symptoms you are already experiencing, so you are never sure if they are helping or hindering.

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  • Caption This

    Two angry red cartoon devil's with wings are pointing at a caption that says, 'caption this'
    Caption this

    WHY IS ACCESSIBILITY ALWAYS LEFT TO THOSE THAT DON’T HAVE THE ENERGY TO DO IT???

    If you haven’t been watching my stories you won’t yet of seen caption gate. While making my first IGTV video I came up against issues that those from the disabled community always face. Access it seems is something only we care about and massive companies couldn’t give a flying fuck which means that all the labor falls on people who really don’t have the energy for it. 

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  • The First Rule of Pain Club is We Don’t Talk About Pain

    A cartoon zombie with it's arm falling off and green gas coming from it's mouth is standing next to a caption that reads, 'the first rule of pain club is we don't talk about pain'
    The first rule of pain club is we don't talk about pain

    I am breaking the cardinal rule of pain club and I am actually going to talk about pain.

    It was only the other day, when I was talking with a fellow spoonie friend that I realised to some extent we all actively avoid talking about our pain.

    I think in the beginning it’s about not creating too much fuss or even just not really knowing how to handle the amount of pain you are in. But as time goes on I find myself talking about it less and less. It’s not for fear of my network, I have some incredible support both online and offline. It’s more a fear of admitting how bad it really is.

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  • You Can’t Pour From An Empty Cup

    there is a cartoon heart bleeding out and the caption says 'you can't pour from an empty cup'
    You can't pour from an empty cup

    Isn’t that heart just the best image for when you keep putting others needs above your own? You just end up bleeding out. 

    Now don’t get me wrong, I am so guilty of this too. I think as people who suffer from chronic illness we have this awful tendency to try and put others needs first out of guilt that so often we let them down or can’t be there for them in the way that we would if we weren’t sick. It’s like we bargain with ourselves that if we push and go to that  party or help that friend out, it will make up for all those times we couldn’t. The thing is it normally just lands us in a flare and has us cancelling other plans that we will feel guilty about. 

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