I have been to the emergency room more times than I can count. Appendicitis, abdominal tear, fainting, partial paralysis, abnormal migraine, undetectable cortisol levels, multiple bouts of anaphylaxis, and that time my eye swelled closed for no apparent reason.
There has been a recent uptick in these visits for me over the past year (hurray!) which has lead me to a number of realisations about how I can make my hospital stays more comfortable and efficient. While the title is of course “tongue in cheek,” I think these suggestions really could be useful for anyone suffering from a chronic condition and so I have decided to share them below.
1. Travel in an ambulance
I want to start by acknowledging that I speak from a place of enormous privilege here. I live in a country with subsidised health care, where the co-payment for an ambulance won’t send you into debt. However, if you can manage it, please call the emergency services rather than driving to hospital.
The reasons for this are threefold.
First of all, paramedics will likely take you to a hospital where you have the best chance of being seen quickly. Paramedics may be directed to take you to specific hospital (even if it’s not the closest one) based on how busy your city’s emergency departments are. As a private citizen you will have no way of knowing this when deciding which hospital to go to.
Secondly, paramedics can administer certain medications and treatments to you as soon as they arrive on the scene. For example, during my most recent episode of anaphylaxis, I was administered hydrocortisone and extra antihistamines, (after I had used my EpiPen of course!). As a result, I was already feeling much better by the time we arrived at the hospital and only had to stay for a short time.
Paramedics can also make observations about your condition from a trained perspective, which they can then pass on to the nurses and doctors on arrival.
Finally, it is my personal opinion that you are treated better when you arrive by ambulance. I can only speak from experience, but it is very easy to be dismissed when you arrive at the hospital of your own volition, especially if you don’t look sick. Having the formality of being brought in by the paramedics and having them advocate for what happened can be extremely useful for encouraging doctors to take you seriously.
(You also have the added benefit of medical professionals on hand during your journey in case your condition deteriorates; plus you’ll have access to a wheelchair if walking or standing become too difficult.)
2. Make the most of the time spent waiting for the ambulance
I know this might sound a little bonkers at first glance, but hear me out. Obviously, the first step in handling any emergency is to call the emergency number for assistance and follow any self-treatment protocols that you may have for pre-existing conditions (such as taking medication).
However, what you do next can have a big impact on how smoothly your hospital stay goes. Contact a support person immediately if one is not already with you. Give them a summary of your situation, including your symptoms, timing of symptoms, suspected trigger and the time and quantity of any medications you have already taken.
Ideally you should text or write this down so the person does not forget anything. Having written notes also means that you or a doctor can refer to them if you are too unwell or in shock to think or speak clearly.
Having an objective person who understands what has happened is also essential to advocate for your needs if you are not taken seriously, or if you become too incapacitated to communicate.
Ideally this person would already be familiar with your pre-existing conditions and basic medical history. However, if you don’t have someone in your life like this, tip no. 3 can help.
3. Commit your life story to an excel spreadsheet
You know what isn’t fun when you’re stressed or in pain? Having to answer a million rapid fire questions about your medical history from an angry triage nurse! You know what else isn’t fun? Being asked to spell the names of unusual or potent medications you are on and then being met with judgemental looks because the doctor hasn’t bothered to find out why you’re using them!
I strongly suggest you create a spreadsheet which lists all the medications you are on, their quantities, the times/situations in which you take them, and most importantly the reason you are taking them.
I also have an extra row below this table that lists previous medical procedures that I have had done and any previous health problems that I am now in remission from. Depending on the medical system in your country, you might also consider including the details of the doctor who diagnosed/manages your key conditions.
This minimises the risk of you forgetting anything important under pressure or something being misinterpreted in the high stress ER environment. I have had doctors take the spreadsheet away with them to do further reading on certain medications/conditions which has significantly sped up the process of my care.
4. Have a survival kit
Print out that spreadsheet and put it in a small bag that you keep by the door (or in your handbag) along with a few other things:
Pillboxes with your essential day to day medications
A small supply of your preferred pain relief
Phone/tablet and charger
Action plans for known conditions
Unfortunately, once you go into the emergency room there is really no way of knowing how long you will be there for. There may be a long waiting time for treatment or follow up testing, or the doctor may simply want to keep you there for a longer period of observation. I have noticed that during the COVID-19 pandemic you are often not allowed to have a support person enter the hospital with you or bring you anything, so it’s better to be prepared if possible.
While some hospitals are great at prioritising pain relief for patients, others are not. In my experience it’s also a lot easier to say “hey I happen to have these tablets with me which are my preferred pain relievers, can I take them?” rather than having to convince someone who has never met you before why you need/want to be given one specific medication over another.
The same goes for food, especially if you have dietary requirements. Unfortunately, it’s just not plausible for emergency departments to worry about feeding their patients, and if you have any issues with your blood pressure/blood sugar you are in for a sh*tty time if you get stranded without any safe foods.
Please note: it’s important to ask the treating doctor if it is ok to eat. In certain emergencies (for example, when the possibility of surgery on the cards) it may be necessary to keep your stomach empty.
5. Don’t be afraid to ask questions
In the ER environment it can be easy to feel rushed, but there is nothing wrong with taking the time to ask questions about the diagnosis or care you are receiving. I also strongly encourage you to trust your gut if you feel something isn’t right. Doctors are human too and can make mistakes.
Examples of some follow up questions that you might need to ask include:
“Just confirming that I can take medication [x] with my regular medication [y]?”
“Did the nurse communicate to you that I have [x] condition?”
“Did the nurse communicate to you that this has happened to me before and it turned out to be [x] rare/unusual medical thing?”
“I have previously had bad reactions to medications in class [x]. Is medication [y] a part of the same class or a different one?”
“What should I do if this problem re-occurs after I am discharged?”
“Should I ask my regular doctor for any follow up testing after I am discharged?”
“Is a summary of today’s hospital admission being sent to my regular doctor?”
“Could you please explain why I am being prescribed this treatment/test?”
While not all doctors react positively to being questioned, it is your right as a patient to have an understanding of how your health is being treated. Your knowledge of your body and it’s history is a very important aspect of being treated safely and effectively.
6. Assign someone to be your “communications manager”
In an emergency it’s important to focus on communicating clearly with the doctors and nurses, following their directions, and then resting and recovering. You don’t need to be worrying about canceling that appointment, telling that friend you won’t be making it to your coffee date, or breaking the news to your boss that you probably won’t be at work tomorrow.
Assign someone to take care of your life admin for the day. If you want to/have to share updates with family or friends, agree on how much detail you feel comfortable sharing and how your “communications manager” should handle any pushy questions or requests.
Consider any changes that you could make to the days following your hospitalisation to make it easier for you to recover (for example cancelling non-essential plans) and ask your communications manager to take care of it for you. You might also ask them if they can put a microwave dinner or some basic groceries in your fridge and fill any new prescriptions from the hospital for you. There’s nothing worse than finally getting home from the ER only to realise that you have a million things to sort out before you can relax.
7. Take notes on what happened at the hospital
Finally, I urge you to take some quick notes of what happened at the hospital after discharge and ensure that they match the admission report that is sent to your doctor.
When I was 16, I was re-admitted to hospital after my appendectomy due to a fever and uncontrollable shaking. After gushing so much blood during an attempted blood test that sheets had to be placed underneath my body to absorb it all, I ended up being admitted to a ward for several days and given antibiotics.
My discharge report simply said that I had suffered “post-operative pain.” That was all.
As I have connected with more people in the chronic illness community, I have realised that while things like this may seem unbelievable, they are a shockingly common occurrence. So protect yourself and make sure that at least one doctor has an accurate depiction of what happened on the record!
While I hope that no one reading this will be visiting the ER anytime soon, it can be an unfortunate reality of life, especially for those of us who suffer from multiple or rare medical conditions. These practices have helped me feel calmer and more in control of my recent emergency hospital admissions and I hope they do the same for you.
Did I miss any tricks that make unplanned hospital visits more bearable? Let me know in the comments below!
The images in today’s blog post are courtesy of Unsplash.