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’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.


    Read More

  • 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?


    Read More

  • 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? ⁠


    Read More

  • 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).


    Read More

  • 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.


    Read More

  • 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.


    Read More