Making It Through A&E
A Bit of Background
Like many other autistic people, I have chronic illnesses. This means I spend an uncomfortable amount of time in hospitals and doctors’ offices. Despite all this medical exposure, nothing will spike my heart rate quite as high as the thought of a visit to the emergency room. Despite the medical fears of what is wrong with me this time and the constant drain of repeatedly having to describe my chronic illnesses and multiple tablets to Health Care Professionals (HCP), who apparently don’t like to read charts. The fact remains that the emergency room is a sensory nightmare for me. The harsh fluorescent lights that glare off the bright tiled floors. The constant cacophony of talking, machines beeping, trollies being pushed and doctors calling patients names. The strong chemical smell hits my temporal lobe as soon as I step into the room. The prodding and poking by HCPs, who always seem to be too close for comfort. Adding the use of masks, since the pandemic, makes it harder for my brain to process what is being said. All this and more can cause a trip to the Emergency Department to be an upsetting experience for me, and that’s before I deal with what medical emergency has caused me to be in the cesspool of sensory overload. So how does an autistic individual like me cope with multiple Emergency Room visits a year? Well, the truth is; I didn’t used to. I worked hard over the last year to make ED a less overwhelming experience for my senses, especially since I can no longer have a trusted person assist me on these journeys.
Before I jump into my tips and hints I want to tell you a bit about me first. I self-identify as autistic and am currently awaiting assessment. Because of this, I don’t feel comfortable mentioning autism to a doctor or any HCP, despite wearing the autistic label proudly in my everyday life. Secondly, I am very fortunate to be in a position that I can walk, talk, hear and comprehend things independently – even though sometimes it is a struggle. I am however, not very good at advocating for myself in a medical capacity and will simply give in 90% of the time with the slightest push back from the doctors. I attend therapy and my therapist in 2020 was very kind and patient in helping me explore and develop my following coping mechanisms.
My Coping Mechanisms
For me preparation is key. Let’s be honest, most of the time we present to the Emergency Room we would have enough time at home to throw things in a bag. However, at that moment you are often so concerned with the thoughts of why you are going to A&E, that you don’t even remember half of the stuff that would be helpful. To help tackle this issue, I suggest making an ED bag list. Keep the list in a place where you will know where to find it if you find yourself planning that dreaded trip. This could be a written or printed copy in your medicine press or at the back of your bullet journal. Wherever. Personally, I prefer to keep things digital, so whether that is excel online, google docs, ClickUp or even an email to yourself. Take some time to think about the different methods and find the best place for you to access that list in case of an emergency.
But what should I even put on this list I hear you ask. If you google “hospital list” you will get hundreds of suggestions. The important thing is thinking about what is relevant to me. And for those that are curious my list is at the bottom of this blog.
Okay now you’re packed, great, I expect you feel much better able to take on the task of heading to ED. Though honestly if you are like me and need to attend ED or have hospital visits multiple times a year, I recommend leaving a bag packed at all times and just add the few things on the day, such as a drink and your phone.
Before you actually head to ED there are a few things you may take into consideration. Here are some examples that I have thought of but each of our situations is unique.
How are you getting there?
Bus, taxi, a lift, drive yourself, ambulance, walk?
Do you have money for the taxi fare or the car park?
Who do you need to contact before you go in?
Any consultants you need to inform?
Family or friends?
Is there anything you should arrange before going into the hospital?
Whew, you finally made it to the Emergency Room. Good work. Now take a moment to breathe. When you’re ready head up to the reception area. Personally, I like to have everything prepared before I approach the desk: so I have my referral letter and medical card in my hand before I even queue up. If I’m particularly nervous I will even have a written note that includes the following:
Date of Birth
Next of Kin’s Name
Next of Kin’s Relationship to me
Next of Kin’s Address
Next of Kin’s Phone number
What brought me in today
Sometimes I will just read from this list and other times I just hand it over and let them take the information without me talking unless there is information missing. I try to take this back after showing it as I will show it to the multiple doctors and nurses I see in my time in ED.
Be prepared to do a lot of waiting. Sometimes this waiting can feel endless. If possible do something to help distract yourself but be aware of whether you can hear names being called. Trust me, you don’t want to miss your name being called. My favourite distraction method in waiting rooms is to read, but I have also been known to cross-stitch, listen to audiobooks or podcasts, ring or text my friends, scroll through social media and watch Netflix on my phone. I am very lucky because my local ED has free wifi. Even so, sometimes I need a break from the screen and read, fidget or write instead. Even as I write this I am using paper and a pen in the ED’s waiting room.
Honestly the most important coping mechanism I learnt this year was to do what I needed to do to feel less sensory input: regardless of how ridiculous I felt I looked. Honestly, within a few minutes of lessening sensory overload, I couldn’t care how I looked and in reality, people in ED are in too much pain and discomfort to care about how you look. So once I wasn’t in anyone’s way I did what I needed to do to reduce the input.
I would position my chair towards the wall, once I wasn’t blocking the path or anything like that so that I could see less movement
If I can’t move the chair, and movements are truly getting to me I would put on an eye mask
I would use earplugs to dampen all the overbearing noises
I would use sunglasses to dim the fluorescence lights
- I would wear baggy clothes so I am not restricted
- I would offer to put on my own hospital bracelet and do it loose so its not restrictive
Calming My Emotions Strategies
Sometimes, however, I was too deep in distress for those differences to help in that moment. This is the bit that took a lot of practice in non-ED situations before I could get it under control. Though I will say since I have started implementing all the above methods, as soon as I know I have to go to ED, it has made the likelihood of me getting into emotional distress less likely. For me emotional distress in the ED is panic. I cry. My heart pounds in my chest. I begin to hyperventilate. I get shaky and I have such a strong urge to just run out of the place.
I think it’s important to point out that sometimes different methods will work more effectively than others. When I first started using these skills my measure of success was if I actually manage to stay in the hospital. Now my measure of success is if I can appear calm to those walking by. The other important point is that once I gain some type of control it does not mean that I will continue to have control. Sometimes I have to revisit the skills every hour, sometimes less and sometimes more. It is imperative that I try to be kind and compassionate towards myself and not shame myself for not being calm the entire time I am in the ED.
The first thing I try in these situations is to breathe. I take big diaphragmatic breaths, placing a hand on my stomach. I can feel it rise and fall as if there is a balloon being slowly inflated and deflated in a controlled manner. If I need help timing my breaths I will use an app like Awesome Breathing or even search breath in the gif bar on my text keyboard.
If I am in a state where I can’t even control my breathing I turn to the TIIP skill from DBT. Specifically, I focus on the temperature (T) part. I will buy a cold can from the vending machine and hold it at the base of my throat or anywhere else I am feeling tightness. The idea of this skill is to draw your focus onto the coldness, helping shock your system into calming down. If I can’t get a cold can I will go to the bathroom and splash cold water on my face and run water over my wrists. Maybe one day I would be brave enough to ask for a cold pack from a nurse but till then I will stick to my cold cans.
The final thing I try is just to distract myself. Be mindful of an activity: be that reading or fidgeting, whatever. Every time my mind wanders I just start describing the activity in my head, in as much detail as possible. It normally takes a lot of redirecting but it is worth it in the end.
If all else fails just try to remind yourself why you are in ED. Say it as many times as you need to in your mind. Mutter it to yourself. Ring someone and tell them. Type it out on your phone multiple times. Write it out over and over again in your notebook. Because I know there has to be a valid reason for you to be sitting in ED and maybe you need to remind yourself of that too.
Thank you for taking the time to read this. I hope you found it useful. I found it helpful to write and distract myself from the Emergency Room. If you have any tips you use when visiting the hospital please do comment and let me know.
My Hospital List
Backpack (I can’t go anywhere without one and I need somewhere to put all the following)
A Book (whileI normally have ebooks and audiobooks on my phone I like to bring a physical book too to help save my phone battery)
A notebook and pen (useful for taking notes to tell the doctor or what the doctor told you. Alternatively it’s also great for writing as a distraction)
Fully charge power bank with the cable
In light of covid: personal hand sanitizer (yes there are plenty around the hospital but I like just sitting there and slowly, mindfully sanitizing my hands)
In light of covid: face mask and mask bracket (my local hospital only allows disposable face masks)
Lip Balm (hospital air can be very drying on your lips)
Cash or card (In case you want something from the vending machine or have to pay for a taxi etc)
A drink (Whether that’s a reusable bottle or not you won’t regret bringing a drink. Most hospitals have water coolers to top up your bottle with)
A protein bar (You can be waiting a long time and never see food so I always bring my favourite protein bar)
Mints (helps give a sensation to focus on)
Ear defenders or ear plugs (to block out noise)
Eye mask (To block out visual stimulus)
Sunglasses (To dim the lights)
Tissues (helps if you start crying)
Travel neck pillow (I don’t always bring one, but if my neck is stiff, my neck really appreciates it after sitting on those rigid plastic chairs normally for hours)
My hospital folder with
the referral letter (if I have one)
a list of my meds (the doses and why I’m taking them)
a photocopy of my medical card
List of conditions I have and the consultants that treat each of them
Registration preparation list with blank spaces for what has brought me in today
PJs (on the off chance I have to be admitted I’d rather have my PJs than a hospital gown)
Mx C Doyle currently goes by the name Cír. They live in Dublin. Cír has multiple Neurodivergencies. They are not formally diagnosed with some of these due to several systematic barriers. Cír is a disabled, trans, queer person who has too many labels to name in a quick bio. After years of therapy and self-care, and discovering they are a BPDer, Cír is very passionate about mental health. Other topics that Cír throws themself into include the queer community, polyam community and general activism. Cír is the project coordinator of Bi+ Ireland, as well as the creator of Rainbow Autistics Ireland and Book Club for Autistics Ireland. Though in their downtime Mx C can often be found consuming fandoms, playing video games or reading a book. They are a self-confessed geeky social activist. Mx C hopes to use this blog to share their perspective of being an autistic neurodivergent queer as well as sharing many tips they learned over the years.