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When You're Chronically Ill and Don't Know What Constitutes an Emergency Anymore

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I realized I don’t know what constitutes an emergency anymore. Living with a chronic and invisible illness means that all the symptoms that lead to life-threatening situations are symptoms that run my day-to-day life. I have been in and out of the emergency room since October and it is now January. That is three months of continuous emergency room visits.

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I have some emergency room doctors telling me there is nothing they can do for me as they are monitoring my symptoms, while some are saying to come in every time I feel I can’t breathe, while others are telling me to see my specialist, while another is telling me I am welcome to come in and get evaluated anytime. I have online nurses and on-call physicians recommending I go to the ER. So when is it an emergency enough for me to go in and get evaluated?

Here are the guidelines for the other part of the population, the part that doesn’t have chronic and invisible illness: Seek medical attention if: You have pain in your chest, you have pain in your chest that travels to your jaw, neck, and shoulder, you feel very short of breath, you have a very fast heartbeat, you have a very bad headache, you have a seizure, you feel dizzy, you feel weak, numb, or pass out, you have abdominal pain, you have a fever high then 100.4 degrees, you vomit, you have changes in your vision, trouble talking, trouble concentrating, with numbness on one side of the face, arm or leg, extreme drowsiness.

Now raise your hand if you have ever felt a majority of these symptoms. I know I have felt every single one of these. These are just the big, bad, scary symptoms. There are a dozen more that can be found in the paperwork you obtain from the ER department that read “When to seek medical advice.” These may include swelling, reactions to medications, worsening symptoms (if these are symptoms you have felt before and been checked out for), or prolonged symptoms (if you have felt and been checked out before for them as well).

I had the paramedics at my house on New Year’s. You see I panic, I know I get scared. Should I not be afraid when I am awakened out of sleep feeling disoriented, spinning, gasping for air, heart racing, unable to concentrate?

They came by and it was a pair I had seen various times. The conversation went like this. “They haven’t figured out what is wrong with you yet.” “No.” “Well your vitals look fine. I don’t think you should go into to the ER. It’s New Year’s night and it’s busy and from our end nothing seems to look wrong. Just try and sleep it off and call you doctor in the morning. I hate to leave you in these state, but I really don’t think the ER is going to be of much help for you.”

Fair enough, so I tried to sleep, but the next time came on hard, and this time with the wave of disorientation. I felt severely suicidal. I called a nurse and explained what was going on and she recommend getting into the emergency department (no surprise right). So I called the fire department instead of 911 and gave them the low down of what was going on and this time I mentioned these waves of suicidal emotions. This escalated the situation and now involved not only another set of paramedics coming out, the fire department coming out, but also the police to come check me out.

Once again I had to explain that I wasn’t intentionally suicidal, but that I was getting waves of disorientation, I felt out of it and sick, and these suicide feelings felt like auras. The cops told the fire department what the situation was as they took my vitals. One fireman decided he would chime in and tell me how I needed to stop calling the paramedics and stop going to the ER for these episodes. So I told him if I feel like I am going to die what am I supposed to do, let it happen? Everyone around him shook their head and said no, absolutely not.

While we waited for the paramedics to load me up in the ambulance one of the cops told me I did the right thing. No matter what, my safety should always come first. I was taken to the ER and despite my physical symptoms I was put in the behavioral health holding unit. I still got medical care so I was only slightly bothered. After talking to the behavioral health specialist she looked at me and said, “You know what, you do what you have to do to find out what is going on. You have to keep yourself
safe.” She saw no reason to admit me, but instead saw me as someone who had a medical condition people didn’t seem to take seriously. At least that’s what it felt like.

So when do we go into the emergency department for medical care when all of our symptoms defeat the odds of what could and could not be an emergency? We go in when we do not feel safe at home, we go in when are intuition tells us it’s time to go in. There will always be people who do not understand the battle you face and we all know how lengthy waiting for specialists can be. Do not risk your life because of someone else’s opinions. Your safety and your well-being is what matters.

Getty photo by phillyskater

Originally published: January 3, 2019
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