Neurodiversity Celebration Week: Living with cancer as a neurodivergent person

This week is Neurodiversity Celebration Week, so we wanted to take a moment to talk about the experience of living with cancer as a neurodivergent person. 

We've done a bit of research and looked at different experiences people have of living with cancer and being neurodivergent. Below are some of the challenges that can come up, along with a few tips we’ve come across that some people have found helpful.  

Everyone’s experience will be different, so if you are neurodivergent and living with cancer, we would love to hear from you. Reply to this blog to share your experiences, which may help others who are going through the same challenges. 

Receiving and processing a diagnosis 

Being told you have cancer can feel overwhelming for anyone. Neurodivergent people may process this news in different ways. 

Some people may need more time to take in what they’ve been told. Others may focus closely on practical details, such as treatment plans or timelines. 

Uncertainty can also be difficult for some people, so having clear information about what happens next may help. 

Some things that may be helpful: 

• Asking healthcare professionals to explain the next steps clearly 
• Requesting written information to look at later 
• Taking time after appointments to process the information, such as going for a walk or spending time alone 
• Writing down questions that come up afterwards to bring to your next appointment 

Communication and medical appointments 

Cancer appointments can involve a lot of complex information in a short space of time. Some neurodivergent people may feel overwhelmed and need more time to think about the information they are given. 

People also communicate in different ways. Some neurodivergent people prefer communication that is clear, direct, and literal. Medical words, unclear explanations, or fast conversations can make it harder to understand information or ask questions. 

Jessie, who is autistic, described her experience when talking about cervical screening: 

“It’s the difficult sensory environment of the waiting room, whether it’s your GP or whether it’s a hospital. And it’s also difficulties around being able to identify what’s going on in your body and then trying to communicate that to someone else.” 

Here’s what others have tried: 

• Asking for written summaries or bullet-pointed information after appointments 
• Preparing questions in advance and bringing them to the appointment 
• Writing down key points during the appointment 
• Bringing someone along to take notes or help talk through the information afterwards 

Managing hospital and treatment environments 

Hospitals can often be busy, noisy, and unpredictable places. Bright lights, busy waiting rooms, and new sounds or smells can feel overwhelming for some neurodivergent people. 

Knowing what to expect ahead of time, or making small adjustments, may help make these environments easier to manage. 

It could be supportive to try the following: 

• Asking in advance what will happen during an appointment or treatment 
• Bringing headphones or earplugs to reduce noise 
• Wearing your most comfortable clothing or bringing familiar items with you 
• Asking staff if there is a quieter place to wait 

Changes to routine and daily structure 

Many neurodivergent people rely on routines to help support their wellbeing. Cancer treatment can change daily routines. This may happen because of appointments, hospital visits, or experiencing new symptoms. 

Trying to keep some structure around treatment can help some people feel more grounded. 

Here’s what others have tried: 

• Building small routines around treatment days 
• Planning rest time before or after appointments 
• Keeping familiar daily habits where possible 

Managing symptoms and side effects 

Cancer treatment can cause side effects such as fatigue, pain, or nausea. For some neurodivergent people, these symptoms may feel different or be harder to describe. 

Tracking symptoms can sometimes make it easier to explain what is happening and get the right support. 

Some things that may be helpful: 

• Keeping a symptom journal using a phone, app, or notebook to track changes 
• Writing down questions about symptoms to ask your healthcare team 
• Bringing and sharing these notes with doctors or nurses during appointments 

Get support on the online community 

Online spaces can sometimes feel easier for neurodivergent people to get support because they allow time to read, think and respond in our own way and in our time.  

The Macmillan Online Community can be a place to share experiences, practical tips and encouragement with others who understand what living with cancer can feel like. 

If other aspects of your identity have shaped your cancer experience, you might want to visit the Identity forum. There you will find different forums where people talk about how topics, such as sexuality and religion, relate to their cancer experience. 

As part of Neurodiversity Celebration Week, we would really like to hear from you. 

If you feel comfortable sharing, you might want to reflect on questions like those below and reply to this blog: 

• What role has your identity played in your cancer experience? 
• If you are neurodivergent, what has helped you navigate appointments or treatment? 
• Are there small adjustments that have made a positive difference? 
• What do you wish healthcare professionals or others understood about neurodiversity and cancer? 

Your experiences could help others feel less alone and may offer ideas for people going through something similar.