Sharing some tips on suriving a day case admission as an auADHDer with ARFID and C-PTSD :)
Any kind of medical situation causes me a significant amount of distress, discomfort and trauma. Being autistic and ADHD as well as having medical trauma as part of my C-PTSD. It can make an already stressful situation 10 times worse and lead to worsening of both physical and mental health symptoms.
Going into to hospital causes me to become very dysregulated, anxious, overwhelmed and distressed. On Monday I had to go into hospital for a minor procedure under general anaesthetic. This caused a lot of anxiety in the build-up, and also during. However, for the first time ever the experience was NOT re-traumatising!! I survived with minimal distress and for me that is huge. I wanted to share some of the steps I took, in the hope it might help others who are in similar positions/situations. I am not a doctor this is just my experience and everyone is different and unique as are their circumstances make sure you follow your medical team’s advice and ask them for support.
The week before (I only knew one week before it happened!) I was incredibly anxious, felt overwhelmed, was completely unregulated, very irritable and basically couldn’t sleep! I wound myself up thinking I was poorly, I basically got myself in a right state. I didn’t think I was worried per se but trauma stays in our bodies and my subconscious was having an absolute panic attack. I think due to my past experiences I was very much in a dissociated state to survive so it was my body and physical symptoms which was the only way the anxiety to make its way out. I wasn’t having anxious thoughts but my body was definitely showing signs of significant anxiety. To make it worse I had to travel up from London to Sheffield, leave uni and my room and these added to my stress. I find change hard and I was only just starting to settle in London and I felt completely uprooted all over again. I am back now and go back to uni today- didn’t sleep last night as I was anxious but I know that so I have stop forcing myself to sleep, panicking about the consequences of lack of sleep. This is how my body reacts and getting stressed about being stressed is only going to make things 10 times worse! Last night I just watched some of my comfort programme and did some of my inclusion project, not forcing myself to sleep or panicking as the clock ticked on was a first for me but really did help so much in lessening my anxiety.
Back to the hospital earlier this week though, I have to give full credit to the staff at Royal Hallamshire hospital for their understanding and support. I have never been to a hospital where the staff have been so kind, caring, understanding of autism and trauma informed- I am so grateful to everyone I met along my journey here as you truly don’t know the impact you made.
I wanted to share some of the things I did/took to help me navigate what is a very difficult experience for me. Remember this is all very personal and unique- everyone will be different and what the require unique. These are some of the things that worked for me, you don’t have all the context of my situations and therefore it’s not comparable however I know I find it so invaluable to hear others experiences and ideas as it makes me think of things I never have and can help me look at my own situation. Also, important to note that you need to follow the guidance of your own medical team and run things past them especially in relation to hospitals and surgery.
Bringing my main man- Teddy
He is my emotional support bear, biggest supported and best friend. With him by my side even the impossible feels more possible. I was even allowed to take him into surgery with me and I woke up with him still in my arms. It may seem small but I cannot tell you how much that meant. Knowing even when I was asleep, he was still there keeping a watchful eye and keeping me safe.
A Beverly
I know she would like to think she is my biggest supporter and she comes a very close 2nd but I am sorry Beverly you can’t compete with the main man and you know that! (she will be reading this as she proof reads all my writing so hello Beverly, don’t let your head get to big reading this next part!!). I am so lucky to have a mum who I am so close with and who understands me so well- don’t get me wrong she is a pain in the arse but we love her for it!! Her coming with me reduces so much pressure and relieves the anxiety I have for having to be ‘responsible’, I know while she is there she will be in charge and that I am safe and looked after. As someone with C-PTSD and who is in a state of constant hyper vigilance this means a lot. Beverly is the Hannah translator (only very few get that title!), she can articulate what I mean or why I am behaving the way I am in a way that the staff can better understand. It’s important for anyone going into hospital/medical setting to have someone with them, there is so much going on, anxiety, lots of information to process, all with the emotions and added medication! I am so grateful that she could be there for the majority of the day to support and allow me to feel safe. Also, company is a good distraction and adds some fun!
Bringing ‘special’ medication
This one I actually didn’t do and is something which I didn’t even think of (to note- taking medicine without your doctors knowing especially in relation to surgery is incredibly dangerous- always talk to your medical team and follow their advice and guidance) was to bring my liquid pain relief. As I am an adult (lol) and being in an adult hospital and with that actually just in the Theatre Admissions Unit, rather than on a ward- they didn’t have access to liquid pain killers, only tablets or dispersible. As an autistic person with ARFID I can’t take these so just had to ride out the pain as it wasn’t severe enough to need stronger. The nurses said that next time I should bring mine in and then they could have prescribed and given me that- all under their guidance and knowing. So, something to bear in mind and ask about if you have similar difficulties.
Support Passport, sunflower lanyard, communication cards, sensory aids
I have three different support passports two for healthcare settings. One is very detailed however being realistic busy departments don’t necessarily have the time or capacity to read them. I created myself a 1-page profile which highlights the key things and handed it to staff to be added to my folder. The nurse was lovely she read it and added to my notes so people could read it! My passport is a really good quick window into me, who I am as well as my difficulties and ways to help. Everyone who has read any of my passports has told me that they really do represent me in a way that they have never seen before in an access passport and that it’s so helpful. People aren’t’ mind readers and with complex conditions which are so unique and individual we cannot expect people to know why or how to help us. Of course, they have their part to play in reading and it’s very much a meet in the middle, two way process but by making a one page healthcare one it helps the professionals save time in their already busy schedules. It also allows them if they want more information to ask for the longer more in-depth one. On the whole since sharing my support passport, which is written in a way that is me, I have found my inclusion and experiences to be much more positive. People are kind and understanding and even though they never fully get it- which is totally okay, I don’t fully get it, so I don’t expect anyone else too! But just that awareness makes a huge difference.
Having my sunflower lanyard is also useful as just an obvious sign to everyone I meet/am around. Most people will know nothing about you or your care, there are so many people in a hospital but most people have some idea of the sunflower lanyard. Just that symbol gives people a sign that you may not behave in exactly a way they understand or might need extra support. It can help be a visual cue to prevent awkward encounters, people thinking your rude or getting into trouble. My communication cards are attached which I can use if I need to.
Same with sensory aids, we all know it’s so overstimulating- by wearing my loops and ear defenders from the beginning it helped dampen some of the overload. It can feel embarrassing but it’s just the same as wearing glasses, hearing aids, needing a wheelchair, crutches or a feeding tube. They are aids which help us to live a better life. There is still so much stigma surrounding sensory aids especially when it comes to adults- people being treated like they are stupid or like a child. This is a stigma I am actively wanting to address and combat, by doing what I need to do, does not diminish my capabilities or intelligence. Sensory aids aren’t just for children and they don’t make you incapable. I will not let societies misconceptions do any further damage to me and my wellbeing, if I need my ear defenders on that’s what I need to do. Its hard but I will continue to fight for better understanding and representation of autistic adults and our support needs. Don’t let idiots cause you to harm yourself!!
Safe Foods
Safe foods and drink- you often have to eat to be discharged so for me bringing foods I like and knew I could eat reduced the anxiety slightly. It also meant I had something I liked for when I woke up and knew I would be able to eat.
Things to do- music
Music is something which massively helps me. There is a lot of waiting around, noise and anticipation. I put my headphones on, ear defenders on top and I was transported into my own safe world. There is so much waiting around so having things to do (including things which don’t require wifi) is super important!
Texting friends
A nice distraction, made me smile! Feeling like I am still part of the world and have things to come back to. A reminder this is only temporary. As someone who spent a long time locked away, being back in hospital can cause those feelings to resurface- feeling claustrophobic, panicking that you are back and you can’t get out. Texting my friends helped keep me present and grounded- it reminded me that this is different. That this is just a quick thing and my life is all still out there. That it is different now and that I have friends, I have a life and I have opportunities. If you have a friend who is going into hospital who may find it hard, if you can send messages, a quick call/facetime (if they want to!) can really make all the difference. The fear of being in hospital when you have a history like mine is incompressible but just those texts helped keep me in the present moment and that I wasn’t losing everything again.
A Glimmer/ treat
Have something to look forward to afterwards, even if it’s in a few days. A glimmer which doesn’t cause additional anxiety which you can hold onto. Life is full of demands and stress, I find it hard to really look forward to most things even if I want to do them and am really excited due to the barriers I face, so having something which is wholly positive gives you something to hold on to and is a shining light in a dark time!
Cancel Plans
Seems really obvious but don’t underestimate how much this will take out of you, and that’s before you add in the recovery time of whatever you have had. My calendar is always full and I cram as much in as I can, but cancelling around this time has been essential- without it I would have broken and there really is no need- nothing is that important!
Comfort items/ comfy clothes
My clothes and spare clothes (even if you leave them in the car). I also had a blanket in the car just in case I had to stay as that helps me stay grounded.
Listened to my body and just let myself sleep afterwards- tried not to fight my body
These were some of the ways I helped myself during my procedure. Was I still massively anxious, overwhelmed and stressed- yes (I have not had a personality transplant!) however did I cope 3 million times better than I ever have- 100% yes. I guess if you compared it to a ‘normal’ person I massively struggled but that is why we don’t compare- I navigated this so so well and the impact on my wellbeing was greatly reduced. When we talk about disability rights it’s not about equality but equity. I won’t and don’t want to be the same as a non-disabled person however I do want the opportunity to succeed, thrive, support to navigate the additional barriers and the acceptance and understanding of who I am, how I work and what I may have to do, to cope. It’s small steps but for me this has been a huge win, evidence of how far I have come and my acceptance of my identity and who I am. I know life will be hard, but I am slowly stopping fighting this and allowing it to be, which in turn has made things easier.
I hope if you are navigating similar struggles, you find peace within your amazing existence. You are beautiful, amazing and loved for who you are. You don’t need to change; you just need to find the ways and the courage to ask and navigate the world in your own way.
Lots of love
Hannah xx