Chronic Illness Handbook

Why Use Compression Socks?
Why Use Compression Socks?
Got achy legs from standing all day? Or do you feel dizzy when going from sitting to standing? Maybe you're a runner who wants to train better, or chronically ill... Read more...
Finally get diagnosis you’ve fought years for* My brain: are we sure that’s right?
Finally get diagnosis you’ve fought years for* My brain: are we sure that’s right?
Soooo, it turns out being medically gaslit for years does have an impact. Who would have known? I found out that for years I have had an incorrect diagnosis and... Read more...
How to do anything as a person with chronic fatigue⁠
How to do anything as a person with chronic fatigue⁠
Living with chronic fatigue should be a sport it’s such a monumental challenge, except it can’t be a sport because every single competitor would be too tired to turn up... Read more...
Stop hiring one Paralympian and calling it a day on disability representation ⁠
Stop hiring one Paralympian and calling it a day on disability representation ⁠
Look, no shade to the Paralympians, you are all great. However, just like with non-disabled people not everyone who’s disabled is born to be an athlete and – frankly –... Read more...
What it means to have disabled pride
What it means to have disabled pride
What it means to have disabled pride A lot of people don’t get the importance of disabled pride. They often think we are glorifying something that shouldn’t talk about. Disability... Read more...
How to survive Christmas while being chronically ill
How to survive Christmas while being chronically ill
Christmas is coming! I don’t know about you, but that suddenly makes me feel very, very tired. I mean, don’t get me wrong, in theory I love Christmas, you get... Read more...
How to support a loved one through diagnosis
How to support a loved one through diagnosis
How to Support a Loved One Through Diagnosis I f you’ve been sent this blog by a loved one, the chances are you don’t really understand the diagnosis process and... Read more...
Why do I resent the healthy people in my life?
Why do I resent the healthy people in my life?
Truth time, my rage towards those I call ‘free range humans’ sometimes engulfs me in a ball of fury. The whining when they get a cold or have gone for... Read more...
Why do the tests keep coming back normal?
Why do the tests keep coming back normal?
Imagine you’re feeling unwell. You’ve waited and waited, the tests finally come back in and the receptionist cheerfully announces ‘they’re all clear, no follow up needed’. There is nothing more... Read more...
Will I ever get better?
Will I ever get better?
If you (or someone you love) are new to chronic illness, or still fighting for a diagnosis, this question has probably crossed your mind more than once. ⁠Even if you... Read more...
Why do tablets not make me feel better?
Why do tablets not make me feel better?
Ah, the medication conundrum. ⁠ Before I became chronically ill I thought you went to the doctors, they diagnosed you, give you medication and then you get BETTER. ⁠In reality,... Read more...
Getting family and friends to understand you’re disabled
Getting family and friends to understand you’re disabled
Getting Family and Friends to Understand You’re Disabled E very body is slightly different and will react to medications in different ways. What works for one person might be a... Read more...
Feeling confident as a visibly disabled person
Feeling confident as a visibly disabled person
Feeling Confident as a Visabiliy Disabled Person T here is nothing quite like the first time you go out with a new mobility aid. ⁠It doesn’t matter if this is... Read more...
Why is lived experience so important?
Why is lived experience so important?
Why Do I Resent The Healthy People In My Life? Or, you know, what the hell is it? I have to explain the importance of lived experiences so regularly I... Read more...
My story has value
My story has value
My Story Has Value T his quote from Hannah Gadsby’s Nanette has always resonated with me but now more than ever: my story has value. When I launched the NYG... Read more...
Finding quality of life in chronic illness
Finding quality of life in chronic illness
Life with a chronic illness can sometimes feel like work/sleep/clean – repeat indefinitely. It’s sometimes as if all the fun is sucked out of life because of fatigue and limited... Read more...
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.... Read more...
How to create a support system
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... Read more...
What is Medical Trauma?
What is Medical Trauma?
What is Medical Trauma? M edical trauma is something you hear in the disabled community a lot but rarely do we talk about what counts as medical trauma – and... Read more...
What Are Usable Hours And What Have They Got To Do With Chronic Illness?
What Are Usable Hours And What Have They Got To Do With Chronic Illness?
What are Usable Hours and What Have They Got To Do With Chronic Illness? Usable hours is a way of explaining how fatigue affects your ability to do things. We... Read more...
How Disability Makes You A Better Employee
How Disability Makes You A Better Employee
How Disability Makes You A Better Employee No really! If you remove the barriers to working, we actually make the best employees, here’s why! Read more...
Why traditional 9 to 5 doesn’t work when you’re disabled
Why traditional 9 to 5 doesn’t work when you’re disabled
Due to various barriers to entering the workforce and staying there once you’re in, disabled people are more likely to be unemployed or self-employed. Difficulties in accessing education is a... Read more...
Why Disabled People Have A Rocky History With Academia
Why Disabled People Have A Rocky History With Academia
Why disabled people have a rocky history with academia Unfortunately, when it comes to education, academic institutions often fail even the most basic tests in accessibility. Learning how to make... Read more...
How I Outsourced My Life: Cleaning Edition
How I Outsourced My Life: Cleaning Edition
Cleaning is hard when you are chronically ill and has always been one of my biggest energy drains. Just one small task could land me in bed for a week... Read more...
You Don’t Have to Be Disabled and Poor but It’s More Likely
You Don’t Have to Be Disabled and Poor but It’s More Likely
You Don’t Have To Be Disabled And Poor But It’s More Likely W hen it comes to disability and money, there is a tendency to equate disability with poverty. This... Read more...
Social Model vs Medical Model in Disability – What’s The Difference?
Social Model vs Medical Model in Disability – What’s The Difference?
What’s The Difference? When we look at disability, there are two very different models used, called the medical and social models of disability. The medical model looks at disability as... Read more...
Narrative surrounding disability
Narrative surrounding disability
The Narratives Surrounding Disability The media is an incredibly powerful tool and is the shortcut to understanding experiences that are not our own. This is especially true when it comes... Read more...
Not Your Inspiration
Not Your Inspiration
Not Your Inspiration! Inspiration porn is a term that was coined in 2012 by disability rights activist Stella Young. This term portrays people with disabilities as inspirational, solely or in... Read more...
Why Warrior Narrative Isn't Helpful to The Chronic Illness Community
Why Warrior Narrative Isn't Helpful to The Chronic Illness Community
When It Comes To Chronic Illness, Why Do Some People Not Like The Warrior Narrative? When we find ourselves in conversations about minor illnesses, even a cold, there is a... Read more...
What’s the difference between person first and identity first language?
What’s the difference between person first and identity first language?
Who knew that as an individual with a disability, it’s our responsibility, to guide non-disabled people as to our choice of language to use about ourselves?  I knew there were... Read more...
Walker Makeover
Walker Makeover
Boring mobility aids should be a thing of the past! One of the first things I did when I got my walker was to pimp it but what I didn’t... Read more...
The Handi Book of Love, Lust and Disability
The Handi Book of Love, Lust and Disability
I had the privilege for a long time of being able to pass as non disabled but once I started to use mobility aids it was then that I found... Read more...
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... Read more...
I’m Not A Drug Seeker, I Am A Person In Pain
I’m 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... Read more...
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 it important?  We’ve... Read more...
What’s It Like To Become Sick And Never Get Better
What’s It Like To Become 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... Read more...
Why Does It Take So Long To Get Diagnosed With A Chronic Illness?
Why Does It Take So Long To Get Diagnosed With A Chronic Illness?
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... Read more...
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.... Read more...
How To Make A Complaint About Your Medical Provider
How To Make A Complaint About Your Medical 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... Read more...
There Is A World Of Difference Between Knowing It’s Not Your Fault And Feeling It’s Not Your Fault
There Is A World Of Difference Between Knowing It’s Not Your Fault And Feeling 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... Read more...
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... Read more...
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... Read more...
I’m Just A Girl Looking At Her Medication Asking 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... Read more...
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... Read more...
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... Read more...
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... Read more...
My Pain Isn't Magically Gone
My Pain Isn't Magically Gone
Chronic pain (that is, pain that lasts for six months or more) is largely misunderstood, and worse still, when it comes to women and pain. Which is astounding considering that 70%... Read more...
All Things Access
All Things Access
Access is an incredibly personal thing, and I am a true believer in the idea that you will never truly understand access issues until you face them. I never really... Read more...
Why wellness culture is toxic for chronic illness
Why wellness culture is toxic for chronic illness
With the wellness industry valued at $3.7 trillion in 2015 and continuing to be on the rise, it can be easy to get sucked into the latest wellness trends and... Read more...