Navigating the health system while neurodivergent

Cancer treatment and autism

I found out I was autistic as an adult, just a month before finding a lump in my breast. I did not have time to process what it meant to have lived my whole life not knowing about, nor understanding my neurodivergence before being plunged straight into cancer treatment. But I was glad to have found out when I did. Knowing I am autistic helped me to better understand how to advocate for myself and my specific needs within the health system. Being in this tough situation really shone a light on my differences and challenges. In this post, I’m sharing some of the things I learned. I hope they might help others going through similar experiences. Much of this advice is not just for cancer treatment but for anyone navigating the health system. Obviously I’m not suggesting a one-size-fits-all approach – what works for you will be different, but I hope that in sharing some of my experiences and solutions, we can start a supportive conversation here. I’m sure many neurodivergent people have valuable experiences to share – please put yours in the comments below. 

Receiving healthcare while neurodivergent

Five colorful measuring spoons being held in a hand
Photo by sowmya seva on Unsplash

Navigating the health system presents particular problems when you are neurodivergent. Hospitals can be tough sensory environments, with long waiting hours, no clear schedule and the need to communicate well about intimate important details of your life with strangers in a very short and pressured time period. 

Many aspects of it can really make you feel like you don’t have much control. In general, I felt there definitely wasn’t enough knowledge across my care team of the kinds of accommodations and supports that neurodivergent patients need. This NHS report would be really helpful for healthcare providers to read. It would be good if the HSE had a similar report and provided more education to providers on supports, but in its absence, this may be a useful resource to share with healthcare providers.

In the meantime, there are also things you can control, which can help to reclaim a sense of power and agency. A useful metaphor for navigating the health system is the Spoon Theory, which describes the amount of physical, emotional and mental energy a person has for tasks of daily living and what it is like when that energy is limited. Here is an explanation of spoon theory for anyone wishing to read more.

If you only take one thing away from this post let it be to do whatever is in your power to conserve your spoons (resources) as best you can. What works will be individual to you. Being unwell and in a difficult environment is going to potentially rob all the ladles and serving spoons out of your drawer, so you need to work to keep every spoon you can – even if they are just tiny teaspoons – they will add up.

Saving your spoons through sensory self-care and managing the physical environment

  • Wear comfy clothes – trousers with big pockets to carry things, comfy shoes, layers on top as it can get very hot in hospital, a front-opening top so you can access arms easier for treatment, with pockets on your top too. I’ve seen people bring a blanket and slippers into the oncology ward to get comfy. Whatever works for you. I like to leave my coat in the car, even if it means a cold walk in to the hospital, it’s one less thing to manage.
  • Make yourself comfy. Even if you think you will only be waiting a short amount of time – it is worth taking the time in case you end up there for longer. Adjust the seat or bed to suit you. Ask for another pillow if you need it. Don’t wait to get uncomfortable – take action to be comfortable from the outset. Bring an inflatable cushion with you if it helps. 
  • Stand up and walk around whenever you can. When you can’t plan your day or schedule this is hard to do. But movement breaks help, and they are hard to do when you don’t know how long you will be waiting. Ask medical staff for clear timelines whenever possible, so you can plan movement breaks between treatments/interactions. (I would love to say this helped but so many times I was told I would only be waiting a short time and this turned into hours, so be prepared for anything.)
  • Limit/manage auditory input. For me wearing noise cancelling headphones from the moment I walked in to the hospital became essential – even if I didn’t think I needed them. At the end of the days where I had used them continually, I found I was less trashed and depleted than on days where I hadn’t. Even if the hospital isn’t particularly loud it’s a stream of input you don’t need to have. You can play music you love or listen to podcasts or books if you have the ability to concentrate. I always have earplugs in my bag too.
  • Have a charger for your phone or device and buy a 2-3m long cable for it or an extension lead so you can plug it in comfortably.
  • Wear tinted glasses or a cap to help reduce bright lights.
  • Bring food you like and water. Getting hungry can be the last straw on a long day in hospital.
  • Have a nice smelling lip balm. This can be helpful when there are overpowering smells. Rub it on your nose and lips to control what you can smell.
  • Have all your tools/aids accessible and handy. A trolley or a bag that sits open on the floor with all your stuff in it makes it easier to access all the tools you’ve brought to help.
  • Bring whatever makes you happy – stim toys or activities you can do. When I had the energy I brought drawing or knitting supplies and that helped so much by giving me a focus, a stim and a way to make the time pass quicker. It also became a way of helping me process everything that was happening. I found having a focus also helped me to have boundaries around keeping my head down and not spending spoons talking to other patients. However I had limited concentration for activities at times so screens were helpful too. 
  • Act on things sooner – if you are uncomfortable or there is a noise or the sun is in your eyes or if you are in pain – don’t just leave it, take action as soon as you can. Remember this experience may feel ok at the time as you are running on stress hormones but afterwards you may feel utterly depleted by being in this difficult sensory environment and being forced to socialise and deal with potentially difficult physical things happening to your body. I have walked out of the hospital weeping and not been able to talk for two hours after at times. I thought I was doing ok but it really all builds up.

Conserving your social spoons through limiting social interaction

  • Don’t feel like you have to talk to anyone – it is your preference. Talking to other patients can cost spoons you just can’t afford. I like being chatty and friendly but have found out the hard way that it can cost me too many spoons to engage a lot with other patients or staff. Other patients are often going through a hard time and might tell you some rough things they are going through. I am an emotional sponge with no filter and so much empathy it hurts. I wanted to say kind words back to everyone but it just cost me too many spoons and left me utterly drained and depleted. There was also a huge emotional cost to being around very sick people. I learned to keep my head down in order to preserve as many spoons as I could. Sometimes this meant literally not looking at anyone else, keeping my attention on whatever I brought with me to do and keeping my headphones on.
  • Ask to be moved if there are free seats in the room that would suit you better – e.g. away from noisy fans/flickering lights/very sick people.

Managing communication with limited spoons and supporting your processing needs.

  • Bring lists of questions – even at appointments with healthcare professionals with whom you have great rapport. Medical professionals sometimes give you an absolute wall of information including unfamiliar medical terms you’ve never heard before. Go in with an agenda of what you want to find out written down. Prioritise which questions are the most important and ask them first.
  • Summarise what they’ve said to you in bullet point back to them and ask if your understanding is correct.
  • Make a recording or take notes in order to enable you to process them later. I have asked to make a phone recording at some appointments as it’s just way too much information for me to take in. Some doctors have been fine with this and some not. I write things down or make notes on my phone otherwise.
  • Have someone to advocate for you. This can be really helpful on days where you don’t have many spoons. Make clear to that person what the most important questions you have are. Get them to take notes. 
  • Write down all the important points after an appointment. It can be hard to remember later. A notebook specially for appointments can be really handy.
  • Ask for more time to process new information. Find out if there is any way to ask questions the next day. I find it very hard to process a lot of new information immediately and often only think of crucial questions after the appointment. Often there isn’t the opportunity to ask later but where possible it can be helpful. Perhaps you can write them down for the next appointment either. Also asking whom to call with questions so you know where to start looking for information is helpful.
  • Get help with understanding symptoms. Let healthcare providers know if you have issues describing pain or bodily sensations or issues with interroception. I found nurses very helpful in helping me to figure out what the actual symptoms I was having were.
  • Above all give yourself a break. Remember the costs of just being in hospital are higher for you. This system is not designed with your needs in mind. Give yourself kudos for getting through each appointment. Do something nice for yourself afterwards if you can. Be kind to yourself. The health system can be brutal and the people who work in it are in my experience usually absolutely brilliant but sometimes can be quite immune to what the reality of being a patient is, never mind a neurodivergent patient. 

Filling the spoon drawer with crafty ideas and supports

If you are handy at crafts or know someone who is, I found the following items helpful. Some are specific to having a mastectomy and some more general. 

  • A horseshoe shaped pillow to use under your arm after a mastectomy. 
  • A small pillow to go under the seatbelt after surgery and keep the belt from rubbing on the scar. 
  • A small pouch to use as a drain bag for after surgery. 
  • A knitted prosthesis – I liked this pattern as a basis and found when made with cotton yarn and stuffing that it was so much more comfortable than the temporary prosthesis they gave me in the hospital or the permanent silicone one (which has an icky texture for me and is incredibly heavy.) Knitted ones can be made in colours that make you smile and you can line them with a light muslin bag with a hole in the back so you can stuff them a bit more if needed.
  • Covers for PICC lines – I made some from old T-shirts. I cut them up to make a tube to slide on my arm and keep the PICC line from catching on anything. It was much more comfortable than the gauze sleeve the hospital gave me. I also made a lumen cover out of a bit of fleece – like a tiny fleece bag with elastic at the end to hold it on. The lumen felt uncomfortable against my skin and this was so much nicer. 
  • I also made a couple of hospital bags to take with me to appointments and hold exactly the right things in all the right pockets, but this is very personal!
  • I am a big fan of visual supports and I found visual schedules very helpful – making a timetable for chemo for example – I drew lines of flowers, one per day and coloured them in as I went along. It helped me see how far along I’d gotten and also helped me predict which days would be harder. (I used a colour coded system to mark how good or bad I was feeling.) I also made visual supports to help me remember what to do when I felt awful and couldn’t even remember basics like taking medication, drinking water etc. I got some stickers, stamps and markers and made cheery charts for reminding me to take medications or record side effects too. A friend made me a badge for each day of radiotherapy and I found these a surprisingly lovely visual reminder of how far I had progressed in the course of it.

At the end of the day, it is you that will get yourself through this time. All the other great advice that organisations like the Irish Cancer Society give is helpful too. Ask for and take every bit of help you can get, don’t expect too much of yourself and treat yourself as well as you possibly can. Remember how you process all this will be very individual to you. There is no right way to process it all and you can take as much time as you need to process it. Cancer treatment can be such a heap of difficult things loaded on to you in a very short time frame, with no time to get your head around any of it before the next part begins. Give yourself all the love and gentleness you can.

I’d love to hear any tips anyone else has, so please do share below.

Caroline