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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 […]

text reads 'I am 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 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 […]

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 […]

What is it like to get 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 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’ […]

we know it takes between 5-10 years to be diagnosed with a chronic illness but why does it take so long?

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 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 […]

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 […]

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 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 […]

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 […]

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 […]