From how to work with your doctor to why you are being failed by the medical system. It’s important to understand the system and the reasons why it fails you as this enables you to fight for better care.

  • What is radical acceptance?

    What is radical acceptance


    Radical acceptance sounds like the kind of new-age bull you might want to steer clear of, along with juice cleanses and ‘think yourself better’, but it’s not what you think.

    Before we talk about what radical acceptance really is, we need to highlight what it definitely isn’t!

    Radical acceptance is not approval of a situation. Just because you are accepting a situation for what it is, it does not mean that you think it’s good or right. It just means you are aware you can’t change it.

    Radical acceptance, at its core, is about recognising what we can and can’t control in our lives. There are some things, like whether or not you become sick, you don’t get a say in. It’s about finding a way to live with that situation as peacefully as possible.

    For many chronically ill people it can be hard, particularly when first diagnosed, to accept the challenges and limitations a chronic diagnosis can bring. Sometimes, it can feel that the negatives outweigh all the positives in our daily lives. Radical acceptance is one way to help balance the complexity of feelings chronic illnesses and disability can bring.


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  • How to create a support system


    Caring for a chronically ill bod is tiring, not to mention expensive, but what if there was a better way?

    People living with chronic illnesses need access to so many things, in fact you need a team of therapists, physios, occupational therapists, nutritionists and so many more. However, it’s rare we get the chance to have all that and even if you do it’s unlikely everyone in the team really understands chronic illness and disability, which is the key to getting the best care.

    Finding a specialist who really ‘gets’ what an illness or condition means for everyday living can take months or even years of research, trial and error, and is often an unaffordable expense.


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    **Trigger warning for this post just because of the mention of medical trauma, PTSD, COVID etc**

    Medical trauma is something you hear in the disabled community a lot but rarely do we talk about what counts as medical trauma – and I think you might be surprised to learn how much actually does!


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    Usable hours is a way of explaining how fatigue affects your ability to do things. We all have the same number of hours in a day but for someone with fatigue, they only have a limited number in which they can complete tasks.


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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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  • 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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  • 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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