When you have a complex chronic illness - you often go through the 5 stages of grief while you mourn the loss of your health & previous lifestyle.
Those stages are straightforward - but the stages you go through learning when to seek medical care are far more jarring. 🧵/1
In stage 1 you generally go to the ER for most 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. /2
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 & immediately life threatening conditions and thus woefully ill equipped to deal with complex chronic illness. /3
Best case scenario they will ensure you’re stable & 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. /4
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 & punishing wait times. More often than not you can end up setback MORE than had you opted out of treatment /5
This realization is hard on people who are new to chronic illness - because no want wants to suffer. No one wants to face the reality that there’s 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 /6
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. /7
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 & suffering that would send MOST people to the hospital. You may find yourself panicking & second guessing your decision. /8
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” /9
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. /10
By focusing on my breath and releasing all thoughts and judgements - it became easier to get through flare ups without constantly second guessing whether or not the hospital was required. The pain became slightly easier to manage. /12
Meditation was what helped me through this stage. I learned breathing techniques to take my mind off my symptoms & keep my nervous system calm. The best lesson I learned was to remain present in this moment… because one moment of pain is easier to handle than hours/days. /11
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. /13
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. /14
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 & normalized suffering. /15
I’ve seen folks blame this on the patient - saying they should have known better & gone to get care. But when you spend years (or decades) being dismissed & told your symptoms are something you “have to get used to” it’s hardly surprising when you adapt to avoid the hospital /16
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 /17
That knowledge changes you. The way chronically ill patients are treated changes you. And the lack of concern for covid mitigation in most hospitals is simply adding fuel to the fire. /18
We need better treatments for chronic illness, better pain management & access to palliative care. Better focus on quality of life interventions. Better training on how to treat these patients when they present to hospital. /19
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. /20
Give yourself grace & 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. /21
Never let anyone diminish what you go through or tell you your experiences aren’t valid. Join me in advocating for masks & clean air in healthcare and for better treatment of patients with chronic illnesses & disabilities. /22
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 & will help you through it. /end
When you have a complex chronic illness - you often go through the 5 stages of grief while you mourn the loss of your health & previous lifestyle.
Those stages are straightforward - but the stages you go through learning when to seek medical care are far more jarring. 🧵/1In stage 1 you generally go to the ER for most 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. /2Now 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 & immediately life threatening conditions and thus woefully ill equipped to deal with complex chronic illness. /3Best case scenario they will ensure you’re stable & 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. /4ER 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 & punishing wait times. More often than not you can end up setback MORE than had you opted out of treatment /5This realization is hard on people who are new to chronic illness - because no want wants to suffer. No one wants to face the reality that there’s 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 /6There’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. /7Once 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 & suffering that would send MOST people to the hospital. You may find yourself panicking & second guessing your decision. /8This 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” /9It 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. /10By focusing on my breath and releasing all thoughts and judgements - it became easier to get through flare ups without constantly second guessing whether or not the hospital was required. The pain became slightly easier to manage. /12Meditation was what helped me through this stage. I learned breathing techniques to take my mind off my symptoms & keep my nervous system calm. The best lesson I learned was to remain present in this moment… because one moment of pain is easier to handle than hours/days. /11Once 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. /13These 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. /14Many 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 & normalized suffering. /15I’ve seen folks blame this on the patient - saying they should have known better & gone to get care. But when you spend years (or decades) being dismissed & told your symptoms are something you “have to get used to” it’s hardly surprising when you adapt to avoid the hospital /16The 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 /17That knowledge changes you. The way chronically ill patients are treated changes you. And the lack of concern for covid mitigation in most hospitals is simply adding fuel to the fire. /18We need better treatments for chronic illness, better pain management & access to palliative care. Better focus on quality of life interventions. Better training on how to treat these patients when they present to hospital. /19Until 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. /20Give yourself grace & 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. /21Never let anyone diminish what you go through or tell you your experiences aren’t valid. Join me in advocating for masks & clean air in healthcare and for better treatment of patients with chronic illnesses & disabilities. /22If 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 & will help you through it. /end
When you have a complex chronic illness - you often go through the 5 stages of grief while you mourn the loss of your health & previous lifestyle.
Those stages are straightforward - but the stages you go through learning when to seek medical care are far more jarring. 🧵/1 ... In stage 1 you generally go to the ER for most 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. /2 ... 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 & immediately life threatening conditions and thus woefully ill equipped to deal with complex chronic illness. /3 ... Best case scenario they will ensure you’re stable & 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. /4 ... 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 & punishing wait times. More often than not you can end up setback MORE than had you opted out of treatment /5 ... This realization is hard on people who are new to chronic illness - because no want wants to suffer. No one wants to face the reality that there’s 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 /6 ... 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. /7 ... 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 & suffering that would send MOST people to the hospital. You may find yourself panicking & second guessing your decision. /8 ... 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” /9 ... 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. /10 ... By focusing on my breath and releasing all thoughts and judgements - it became easier to get through flare ups without constantly second guessing whether or not the hospital was required. The pain became slightly easier to manage. /12 ... Meditation was what helped me through this stage. I learned breathing techniques to take my mind off my symptoms & keep my nervous system calm. The best lesson I learned was to remain present in this moment… because one moment of pain is easier to handle than hours/days. /11 ... 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. /13 ... 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. /14 ... 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 & normalized suffering. /15 ... I’ve seen folks blame this on the patient - saying they should have known better & gone to get care. But when you spend years (or decades) being dismissed & told your symptoms are something you “have to get used to” it’s hardly surprising when you adapt to avoid the hospital /16 ... 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 /17 ... That knowledge changes you. The way chronically ill patients are treated changes you. And the lack of concern for covid mitigation in most hospitals is simply adding fuel to the fire. /18 ... We need better treatments for chronic illness, better pain management & access to palliative care. Better focus on quality of life interventions. Better training on how to treat these patients when they present to hospital. /19 ... 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. /20 ... Give yourself grace & 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. /21 ... Never let anyone diminish what you go through or tell you your experiences aren’t valid. Join me in advocating for masks & clean air in healthcare and for better treatment of patients with chronic illnesses & disabilities. /22 ... 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 & will help you through it. /end
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