"I Won't Go to the ER Unless I'm Literally Dying"

When you're disabled or chronically ill - learning when to seek medical care (and what that care will look like) is a painful and traumatic journey. It often ends in "I will never go to the ER again."

When you have a complex chronic illness - you often go through the five stages of grief while you mourn the loss of your health and previous lifestyle. 

Those stages are straightforward - but the stages you go through learning when to seek medical care are far more jarring. The reality is medical care looks different when you’re chronically ill. The system doesn’t function the same for healthy people as it does for the rest of us. Learning when to seek care (and what that care will look like) can be an incredibly traumatic experience.

When you first become sick (Stage 1) you may find yourself going to the ER for most of your symptoms. You’re scared and need help. Your body doesn’t feel right. You go assuming they will help you. 

If you were healthy previously - your expectation of the hospital is that you go in, they fix you, you go home. 

Now that you’re chronically ill you will have to quickly adjust to the reality that there won’t be a “fix”. That ERs are designed to treat acute and immediately life threatening conditions and thus woefully ill equipped to deal with complex chronic illness. 

Best case scenario they will ensure you’re stable and not going to die and then send you home with instructions to follow up with your own physician. Worst case you will be ignored, gaslit or treated with disdain for “misusing” ER services. 

ER trips are also incredibly hard on a chronically ill body. There’s a lot of sensory overload in that environment. Loud noises, strong chemicals, harsh lighting and punishing wait times. More often than not you can end up setback MORE than had you opted out of treatment. When you’re chronically ill your baseline is EVERYTHING - whatever function you have left is worth protecting at all costs. Going to the ER puts that baseline at risk - because ER settings can’t adequately accommodate people like us.

This realization is hard on people who are new to chronic illness - because no one wants to suffer. No one wants to face the reality that there are many conditions that won’t kill you but will ruin your quality of life. No one wants to accept that some suffering has no fix.

There’s a grieving process that happens when this realization is made - because it shakes you to your core. Becoming aware that there’s a lot of pain and suffering for which there’s no relief is a hard thing to grasp. 

Once you’ve grasped your new reality - there’s a second stage where you have to adjust to what it’s like to stay home through pain and suffering that would send MOST people to the hospital. You may find yourself panicking and second guessing your decision. 

This stage is hard work. It’s not easy to stay home when you’re in pain and need relief. It’s not easy to deny yourself healthcare even if you KNOW they can’t help you. There’s always a little voice in the back of your head saying “maybe this time will be different”.

Photo by Erik Mclean on Unsplash

Image Description: A photo of the back of an ambulance that’s blue and orange striped and reads ‘keep back 10 meters’

It takes a lot of strength and resolve to push through the pain and other symptoms many of us deal with on a regular basis. It’s natural to want a quick and easy solution and it’s very difficult to accept that those solutions don’t exist.  

Meditation was what helped me through this stage. I learned breathing techniques to take my mind off my symptoms and keep my nervous system calm. The best advice I was given was to remain present in this moment… because one moment of pain is easier to handle than hours, days or weeks. One moment at a time helps us avoid overwhelm.

The best way to stay present is to focus on your breath. Release all thoughts and judgements and just sit with your feelings. When you can learn to do this it becomes easier to get through flare ups without constantly second guessing whether or not the hospital was required. The pain becomes slightly easier to manage. 

Once you’ve learned how to manage pain and flare ups without going to the hospital - you enter the third stage which is effectively “I’m never going to the ER unless I’m literally dying”. It’s incredibly sad how many chronic illness patients end up feeling this way. 

These feelings have only intensified since Covid - because patients now have to worry about being gaslit or mistreated, having their baseline setback AND contend with potentially being infected with Covid while seeking medical care. 

Many end up not seeking help under even the most dire of circumstances - and sometimes this can have catastrophic consequences. Symptoms of serious life threatening emergencies get missed because patients have adapted and normalized suffering. 

I’ve seen folks blame this on the patient - saying they should have “known better” and gone to get care. But when you spend years (or decades) being dismissed and told your symptoms are something you “have to get used to” it’s hardly surprising when you adapt to avoid the hospital.

The reality is the system is failing chronically ill patients - the patients are simply doing their best to survive. Healthy people can’t understand how difficult it is to live with the knowledge that there’s almost no help available to you no matter how much you suffer.

Photo by Yuris Alhumaydy on Unsplash

Image Description: A photo of a woman with long dark hair lying in the fetal position in a bed with white sheets.

That knowledge changes you. The way chronically ill patients are treated changes you. The lack of concern for covid mitigation in most hospitals is simply adding fuel to the fire. 

We need better treatments for chronic illness, better pain management and access to palliative care. Better focus on quality of life interventions. Better training on how to treat these patients when they present to hospital. 

Until we address all the barriers to care - people will continue to suffer in silence and lives will be lost. If you’re someone who’s avoided the hospital while experiencing intense suffering - please know you’re not alone. Many people have been in your shoes. 

Give yourself grace and remember that you’re living with a difficult illness during a global pandemic that almost everyone has chosen to ignore. Just surviving is an incredible accomplishment right now. 

Never let anyone diminish what you go through or tell you your experiences aren’t valid. Join me in advocating for masks and clean air in healthcare and for better treatment of patients with chronic illnesses and disabilities. 

If you’re newly disabled or chronically ill - reach out for help. Learning how to navigate healthcare systems and adapt to a reality where little help is available is a difficult thing to do alone. We are here for you and will help you through it.