A Five Part Guide to Accessing Healthcare When Chronically Ill
If you're disabled - you've likely found yourself saying "I won't go to the ER unless I'm literally dying." Here's a 5 part series of articles designed to make the hospital experience more manageable.
This post is something I’ve never done before - a roundup of a series of articles I wrote earlier in the year. If you’ve seen them before please feel free to stop reading - I won’t take offence.
I wanted to do a small post to showcase the five articles all in one place - as well as serve as a summary of what I learned while writing about this difficult topic.
The series was born out of a piece I wrote called “I Won’t Go to the ER Unless I’m Literally Dying”. It’s a refrain that many chronically ill and disabled patients can identify with - as we’ve all experienced difficulties accessing safe healthcare and have learned to avoid hospitals at all costs.
The response to that first post was overwhelming! I knew that it would resonate with a lot of people - but I was taken aback by just how many people are firmly committed to never going to the hospital. My heart broke reading replies and messages from those who’ve experienced trauma and harm while trying to access medical care.
Many of you shared incredibly personal stories of times when you were gaslit, misdiagnosed, mistreated or abused - and I’m honoured you trusted me with your experiences.
The common theme was that disabled patients feel fundamentally unsafe in healthcare settings.
This is something I desperately want to see change. I want to encourage healthcare workers and administrators to read my publication and pay particular attention to the comments and replies on posts. This is a systemic issue that runs DEEP - it will require a lot of effort to course correct.
Step one in bringing about change is admitting that there IS an issue. That was the goal of the series. I wanted to bring to light the fact that I’m not an anomaly in my desire to avoid healthcare settings - nor are my negative experiences unusual or rare. By telling my stories and encouraging people to share their own experiences - I hope we can build relationships to support one another. The more visibility we have the easier it’ll be to raise awareness within the non disabled community. I want everyone to understand that this IS a problem and we need allies to help us fight for better care. With that goal in mind - the five part series was born.
Image Description: A photo of an IV pole with a bag of medicine hanging on it and a greyish/blue background.
Below you will find links to all five articles - which take you on a journey that starts at recognizing how scary hospitals are for disabled people (and how many of us refuse to go). We will explore tips and tricks to make your visit as smooth as possible before plunging headfirst into the pandemic era - with a guide to avoiding Covid while in the hospital and a plea to healthcare settings to do more to protect patients from hospital acquired infections.
From there we veer into advocacy - with an article that explains WHY it’s critical to have an advocate as well as HOW to be the best advocate you can possibly be. We end on a personal story of the most dangerous ER experience I ever had and how having an advocate was essential to my survival.
If you found this series helpful - please share with others (all the articles are free) and/or leave a comment letting me know what other topics you would like covered.
I’m planning to do a second hospital series towards the end of the year - with a focus on setting expectations for medical care when dealing with chronic illness. We are often put in dangerous situations when we need medical help - and I want to help people learn how to make healthcare as safe as possible.
It’s unfortunate (and wrong) that patients bear the burden of keeping themselves safe in healthcare settings - but until we see sweeping changes that is the reality we have to work within.
If you’re a physician reading this and you’re interested in adding your perspective or collaborating on a post about how to improve the disabled patient’s hospital experience - please send me a message!
I also want to help guide newly disabled people who are struggling with deciding when to go to the hospital versus when to stay home. It’s a very different risk/benefit analysis when you’re chronically ill - and the learning curve can be steep! When you’re non-disabled and you have an emergency you go to the hospital without fear and with the expectation that you will be believed, treated well and ‘fixed.’
When you become disabled you quickly learn just how many things the healthcare system is ill-equipped to handle. You learn that while you may FEEL like you’re dying - there isn’t anything they can do to help you. You learn that you need to be selective in WHEN and HOW you use the healthcare system.
You have to carefully consider whether it’s safe for you to go - or whether your issue is serious enough to risk the harm that a hospital trip might bring. Lastly - you learn that any trip to the hospital can have a disastrous effect on your baseline and as such needs to be avoided whenever possible.
I’m also working on a series that will focus on the non hospital related things we need to learn when we become disabled. All too often we are diagnosed and then sent on our way with no real coping tools or support - there’s no welcome guide to the world of chronic illness.
I want to change that.
If you have topics you want to see covered - or lessons you’ve learned the hard way that you wish someone had helped you with - leave a comment, send me a message or email me and I will try and include them in the next series!
One last thing before you go. I’m working on an article about the imbalance of power facing many disabled people. It’s not just in healthcare (though it is a big problem there) - we face it in our personal lives too. We have to rely on caregivers who may not treat us well - or who are abusive.
When you NEED another person to make sure your basic survival needs are met - the dynamic can turn toxic in a hurry. You’re not an equal partnership - and people take advantage of that.
Is this too heavy a subject? Would people welcome reading more about these situations and potential ways we can improve them and/or protect ourselves? Let me know!
I’m going to run an anonymous poll for anyone who feels comfortable answering. You’re welcome to message me directly or email me here. It may take a while for me to respond to everyone - but I promise I read every message and will keep whatever you share in the strictest of confidence.
With that - the poll!
Lastly - since this post focuses on how to make healthcare more accessible and less dangerous for disabled people - I want to end by recommending a few healthcare workers who write helpful substacks! If you need some hope that there ARE healthcare workers out there who are listening to patients - you should check these folks out.
I thought that since I was a seasoned nurse that I would be effective as my own advocate. I had been a patient advocate and for my friends & family for over 25 years. I was shocked at being gaslight when reporting my long covid symptoms. It was so early in the pandemic, that I didn’t know terms like post exertional malaise. I knew how to navigate the healthcare system and I was well aware of the blow off phrases healthcare providers use to covertly gaslight patients. I was both covertly and bluntly gaslight. I realized quickly that I needed my husband to attend all of my appointments as my advocate. I needed his working brain as the stress from the gaslighting or the pre appointment anxiety would shut down my brain. He is able to recite my symptoms, what we have tried, and in a non confrontational way push back on the gaslighting. He is a pharmacist by training, so he has the medical knowledge and experience, but I also know that his maleness carries a lot of weight. Besides the loss of my career, the loss of being my and other’s advocate was a real identity blow.
thx 🌹🌻🌸💐💚💛💜❤️🌼😍🥰