Month: September 2020

  • Why Is Community So Important When You Are Chronically Ill?

    a little cartoon creature is sitting on a cloud singing 'don't wanna be all by myseeelf' The caption says, 'Why is community so important when you are chronically ill'.
    Why is community so important when you are chronically ill?

    When I was first diagnosed I only had one person in my life I could talk to about being chronically ill and at the time I avoided doing that because I felt I didn’t have the right to complain about my lot because they were so much worse. 

    It wasn’t till I became part of the Instagram community that I really saw the benefits of not going it alone. But how do we find where we fit and what makes a good community?

    It’s something that I have discussed with guests on the podcast more than once. When you first get sick it’s only natural to turn to the internet for answers, especially when doctors aren’t forthcoming with information about how to live with your new condition

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  • I’m Not A Drug Seeker, I Am A Person In Pain

    text reads 'I am not a drug seeker I am a person in pain'

    Above I mentioned how the change in narrative around pain medications is affecting our treatment and part of what has caused this change is the drug seeker narrative. 

    Unfortunately, it’s true that opiods at one point were over prescribed but this was to people who had no long term need for them. They are after all addictive but what happens when you are someone who has chronic pain that is never going away? 

    We’ve become obsessed with weeding out the fakers, so much so that we are actually harming those who genuinely need help.

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  • What Is Self Diagnosis And Why Is It Important?

    a ghost is dripping green sludge and saying 'I think something is wrong' next to them the text says, 'What is self diagnosis and why is it important?'
    what is self diagnosis and why is it important?

    With the rise of the internet and the ability to google your symptoms many have been turning to self diagnosis but what really is it and why is important? 

    We’ve all heard about doctor google and how you probably shouldn’t just google symptoms as more often than not the internet will tell you that you are clearly dying of the plague, but why is it such a hot topic in the chronic illness community? 

    Self diagnosis is when a patient uses research to find information on a condition that best fits the symptoms they are experiencing. Often this happens because the patient either doesn’t have access to healthcare or they do but either due to discrimination or fear they are unable to seek professional care. 

     

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  • What’s It Like To Become Sick And Never Get Better

    Title says 'what's it like to get sick and never get better' there is an angry bear with a thermometer stuck out it's mouth saying, 'well this sucks'
    What is it like to get sick and never get better

    COVID-19 has ripped through our lives and turned everything upside down but there’s something else going on that until now hadn’t been brought to the public’s attention, and that’s the idea that you can get sick and never get better. 

    You might have started to see it in the news or online, ‘post viral fatigue’ seems to be cropping up everywhere but what does it really mean and why is it linked to chronic illness? 

    Post viral fatigue is more commonly linked to M.E. / CFS. Although we aren’t 100% sure why it happens, in a lot of M.E. / CFS cases the patient will become sick with a virus, mostly Epstein Barr (more commonly known as mumps, mono or glandular fever) and after the infection has gone away they are left with the debilitating fatigue and other symptoms. 

    Why we are now seeing this mentioned in conjunction with COVID-19 is that there are a number of patients, dubbed long haulers, that seem to be having the same issues as M.E. / CFS patients.

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  • 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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