There's No Welcome Guide to the World of Chronic Illness - But There Should Be
When you become chronically ill - you're on your own. No one teaches you how to navigate this new world, how to adapt to your new circumstances or find help. What do you most want to learn?
When I started The Disabled Ginger - my goal was to foster a community with the hope of helping people adjust to life with a chronic illness. I share personal stories and struggles as well as tips and tricks I’ve learned over decades of being chronically ill.
I did a five part series on the experience of accessing ER and hospital care as a disabled patient. The response was overwhelming and confirmed what I already knew to be true - disabled patients face significant barriers to care.
If you missed that series - you can read the articles below:
When you face sudden disability or chronic illness - your whole world shifts. It’s a harsh adjustment when you move from the land of the healthy into a world of constant sickness. It’s not something people are prepared for.
Christopher Hitchens wrote a beautiful book called “Mortality” while he was dying of cancer. In it he described - in vivid detail - what the world of the sick, terminal and chronically ill looks like. I remember reading it through tears - thinking how well he captured how it feels the first time you go to the hospital as a ‘non healthy person’. How badly we NEED a welcome guide into this new world - because it’s not a simple thing to navigate.
A generally egalitarian spirit prevails, and those who run the place have obviously got where they are on merit and hard work. As against that, the humour is a touch feeble and repetitive, there seems to be almost no talk of sex, and the cuisine is the worst of any destination I have ever visited. The country has a language of its own - a lingua franca that manages to be both dull and difficult and that contains names like ondansetron, for anti-nausea medication - as well as some unsettling gestures that require a bit of getting used to. For example, an official met for the first time may abruptly sink his fingers into your neck. That’s how I discovered that my cancer had spread to my lymph nodes, and that one of these deformed beauties - located on my right clavicle, or collarbone - was big enough to be seen and felt.
How right he was. It really is a completely different world - like traveling to a foreign country without a tour guide. You learn as you go - but it’s a bumpy ride. Along the way you may lose friends and family, healthcare gets harder to access and you will quickly begin to realize how rampant ableism is in our society. There isn’t anyone to teach you how to navigate this new world you find yourself in.
There’s no welcome guide to the world of chronic illness.
It’s one of the reasons why online communities are vital to our survival - because patients sharing their stories help others learn how to manage their conditions. Many learn more from other patients than they will ever learn from healthcare workers. Patients ARE the experts in how to cope with chronic illness.
You may notice that healthcare starts to become a place to diagnose only - often providing bandaids (at best) or no treatment at all. It’s sadly not uncommon to leave a healthcare setting sicker than when you went in.
Chronic illnesses are poorly understood. Western medicine is designed to treat acute medical problems. We are excellent at solving sudden emergencies like broken bones, car accidents or appendicitis - but we are terrible at managing chronic conditions.
We are REACTIONARY - only addressing problems when they’ve spun out of control. There’s no focus on prevention or maintaining good health. And once your health is gone - there’s very little doctors can or will do for you. They will try and put bandaids on bullet holes - and you will quickly feel like you’re in a boat that’s sinking and you have been given the tiniest bucket with which to try and pour out water. You can’t keep up because healthcare can’t keep up. It’s a terrifying feeling.
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That doesn’t mean there isn’t hope. There are a myriad of things you can do for yourself to accommodate your illness, improve quality of life, lessen pain and suffering and find a supportive group of people to get you through difficult times.
Accommodating does NOT mean giving up hope of a cure or improvement - it simply means accepting your disabilities and leaning into ways to improve quality of life. Little changes can make a big difference.
I think about things that I’ve learned that have helped me cope better:
How to pace and stay within my energy window
How to make my apartment more accessible and reduce injuries and unnecessary exertion
How to make diet and lifestyle changes to lower inflammation and improve pain
How to do an advanced directive, choose a power of attorney and handle stressful end of life decisions
How to access medical care, choose an advocate and make hospital stays as easy as possible
How to build my own first aid kit and learn skills to manage common injuries and ailments at home (thus reducing the need to go to the hospital)
How to find a supportive tribe and build a wide bench of people who can help when needed
How to recover from a flare, rest and give yourself grace when you have a setback
How to set expectations for hospital trips and learn when a healthcare worker can and can’t help you
These are just a few of the things that have made an enormous difference in my quality of life. I can honestly say I’ve not found much help in healthcare settings - not because my doctors are ‘bad’ or don’t care - but because there simply isn’t much help for the illnesses I’m dealing with.
As a result - I’ve learned that going to the hospital should be a last resort. It takes a ton of energy and almost always leads to a setback. The risk of leaving the hospital with an infection that you didn’t arrive with is high. There’s always potential for gaslighting, trauma and additional suffering.
Once I learned how to set expectations for when the hospital COULD actually help me - I started making real progress towards helping myself. Towards making incremental improvements to my quality of life and leaning into my disabilities.
It was life changing.
We all arrive at our disabilities from different places. Some are born disabled, others have it occur gradually over time and for others it happens suddenly. Everyone learns to accept their disabilities in their own way and their own time. It’s not always easy - as internalized ableism is a very real issue.
Which brings me to my question for this week’s readers - what do you MOST want to learn about? If there was a welcome guide to the world of chronic illness - what do you wish it included? Is there something you’re struggling with that you wish someone would help you through? Something you learned the hard way that would have been easier if you had guidance?
I want to know! My plan is to take the most common responses and turn them into a multi-part series that can serve as a welcome guide for newly disabled individuals. I promise no suggestion is too ‘out there’… I want to hear it all! We are unique individuals which means we all have different struggles, different coping tools and different disabilities - so don’t be shy. If it’s something you think would help - let me know!
Don’t worry if the poll didn’t include what you would most like to learn - you can send me an email, a message or leave a comment!
Let’s take care of each other, share our stories and keep working to shine light on the issues facing disabled individuals. If we work together - we will be unstoppable!
I'd love a discussion about how to deal with medical professionals that insist you don't know your own body. Case in point: my liver enzymes have been erratic since my mid-20s when I was diagnosed and treated for an amoebic parasite that had been in my liver for at least a decade. It left scar tissue. Every blood test my enzymes are off the chart, but different from the previous test. Every new doctor I see wants to test my liver and do all sorts of scans. I know exactly where the scar tissue is. How big it is and no one, no one ever believes that I know what I'm talking about. It's infuriating. I've had this body for 67 years. Had dozens and dozens of scans and blood tests. I have an excel spreadsheet charting my erratic liver enzymes, and copies of all those tests. And still, the answer is alway, "Well, lets just do this scan to see if there are any changes..." There haven't been in the last 30 years. But sure, what the fuck would I know about it...
Yes, all of this! I've just posted a short post with a bit about ableism , would love to read your take on it. We really do learn so much more from other chronically ill people than from any medical professional.