Hi, I’m Emilia, a BSc Occupational Therapy student currently on placement with JB Occupational Therapy. I also have many years of lived experience of being chronically ill. I wanted to write a blog post about self-advocacy, as I have consistently found within my own experiences and on this placement the importance of being able to advocate for yourself, particularly within healthcare. This blog is a mixture of my own self-advocating experiences and information from other sources.
What is self-advocacy?
Well, apparently, self-advocacy is when you advocate for yourself (AOTA, 2020). Much clearer, right? Maybe we should start with what advocacy is.
According to the Cambridge dictionary, advocacy is ‘public support for an idea, plan, or way of doing something’.
So, when advocacy becomes self-advocacy, you support your idea, plan or way of doing something. This could include: making your own decisions, finding and learning information to gain an understanding about an issue you are interested in, knowing your rights, creating your own support network, and seeking assistance when you need it (AOTA, 2020).
What is the link between occupational therapy and self-advocacy?
Occupational therapists (OTs) are all about supporting a person’s health and well-being by enabling and promoting the engagement in meaningful occupations (AOTA, 2020). With occupations being a fancy word for activities rather than necessarily relating to your job. Basically, our role is to support people to do activities they want or need to be able to do.
Self-advocacy plays an important role within occupational therapy (AOTA, 2020). In fact, it is listed as a factor that directly influences the cornerstones of occupational therapy (AOTA, 2020). Self-advocacy is also a key intervention within the profession (AOTA, 2020). With an intervention being strategies used by the OT to help support people (AOTA, 2020). This could include teaching new ways of doing things, aids and providing education on your condition. So, if a person’s self-advocacy allows them to participate in an occupation, then it becomes relevant for an occupational therapist to help facilitate it (Schmidt, Faieta and Tanner, 2020). This can take many forms.
For example, helping clients communicate their needs (Schmidt, Faieta and Tanner, 2020). At JB Occupational Therapy, there is a letter template to help clients write to their GP. Using this template allows us, the OTs, to help our clients advocate for themselves by providing them with some tools to support them. This could then allow the GP to prescribe appropriate medication, improving general quality of life and enabling engagement in meaningful occupations.
Why is self-advocacy important with a chronic illness?
Self-advocacy is an important skill for chronically ill people (Cornett, 2023). I find that being able to advocate for myself can allow me to have more control over my healthcare. Which was also found by Cornett (2023). While, having the added benefit of empowering us in the process (Cornett, 2023). It does this by letting chronically ill people better communicate their needs, concerns and preferences to healthcare professionals (Cornett, 2023). This can lead to better health outcomes as decisions in healthcare often align more closely with the person’s values and goals (Cornett, 2023).
Education
Educating yourself can be useful when advocating with a chronic illness. By learning as much as you can about your diagnosis, possible diagnosis, symptoms, treatments and/or management strategies can help you make better informed decisions and communicate more effectively (Cornett, 2023; Di Bon, 2022). However, it is important to educate yourself from reliable sources.
Having an idea about your symptoms or diagnosis can be helpful if you do not feel the healthcare professional is listening to you (Di Bon, 2022). Even with self-advocacy, some healthcare professionals will not listen to your concerns. So, remember, it is fine to get a second opinion if you do not feel the first one was right or you want some more input (Cornett, 2023; Di Bon, 2022).
Also, having knowledge about your symptoms, treatment options, and management strategies can help you know what to ask for. For example, if you have chronic pain, you can look up the next treatment options and ask about them during your appointment. The worst that can happen is that the healthcare professional explains why this option is inappropriate for you.
Communication and self-advocacy
Communicating effectively can be a large part of advocating for yourself (Carers UK, 2024), I find particularly during medical appointments.
Communicating effectively during an appointment can involve expressing your needs, asking questions, and being honest (Cornett, 2023). Often, as appointments have time limits, you also need to be concise (Di Bon, 2022). However, it can be easier said than done.
Preparing for an appointment could actually help you advocate better (Di Bon, 2022). This could be thinking about what you want to say in the appointment. Remember, this is your chance to give your side. These could be problems you’re having, e.g. new symptoms, or questions you have about your diagnosis. This is your time to ask questions that you have. Do not forget to write these thoughts down. I usually write these as a list, but do what is best for your brain. Maybe a mind map works better for you? Do you prefer handwriting or typing? Could you use colours to group symptoms? Then take your written-down thoughts with you to the appointment. This way, you can use it during the appointment. It’s better to have it and not need it than need it and not have it with you!
Tip: I write the list on my phone as I know I am going to take my phone, so there is less chance of me losing the list before the appointment. If you prefer handwriting, then take a photo.
Prioritise your thoughts. You can rank them from most to least important (Di Bon, 2022). Then, work your way down from most to least important during the appointment. This means the important problems are less likely to get left if you run out of time.
You could also consider just handing your written thoughts to the doctor. If you think that will get your point across better, why not?
It can also be a good idea to practice your appointments with trusted friends & family (Di Bon, 2022). Get your family/friend to pretend to be the doctor, and explain your symptoms. This should give you some confidence and help you think through what you want to say before the actual appointment.
Have your medications, diagnoses, and allergies written down so you can give them out at each appointment (Di Bon, 2022). I’ve created a template you can use to do this:
This summary can save a lot of time, energy and explaining (Di Bon, 2022). But it is also pretty useful for your own reference (Di Bon, 2022). Especially when brain fog hits and remembering your own name is hard, let alone your list of medications. Also, it is handy to have a copy saved on your phone (Di Bon, 2022). There are apps like Medisafe that can help with this.
Don’t forget when communicating – you know your body and mind best (Cornett, 2023). You know the impacts of the symptoms and when things become concerning to you (Di Bon, 2022). Don’t be afraid to trust yourself and speak up about them (Cornett, 2023; Di Bon, 2022).
If you want to find out more about getting the most out of your medical appointments have a look HERE.
What if I don’t communicate or experience the world in ‘standard’ ways?
There is nothing wrong with needing to communicate or experiencing the world in different ways. There are different ways to tell people that you communicate differently. One great way is to use a health passport.
The NHS website has a template for a health passport
Or the Autistic Girl Network has a great health passport template. It may be specifically for autism, but it can work for other neurodivergences and beyond, e.g. ME/CFS
Another way would be to use communication cards like those by Stickman Communications
Make sure to tell the department and/or your healthcare professional that you communicate or experience the world differently. Also, request that your needs be put on file for future reference.
Don’t self-advocate alone
Sounds a bit counterintuitive, right? If you remember back in the ‘What is self-advocacy?’ section, which talked about knowing when you need help, it is a key part of being your own advocate (AOTA, 2020). While sometimes to self-advocate to the best of your abilities, you might need some help. For example, sometimes I get someone to read my list before speaking to the doctor to ensure I have not missed anything important. This means I do not accidentally leave out a really important point that would then have to wait for my next appointment.
Be kind to yourself
Being your own advocate is hard, and it takes practice. Trust me. I have been self-advocating with a chronic illness for many years. The reality is, I do not always get it right. I do my best to learn from the bad experiences. I do my best to celebrate the wins.
Hopefully this blog post has encouraged you to consider advocating for yourself more. To find out more about self-advocacy, check out the reference list.
Reference list
American Occupational Therapy Association [AOTA] (2020) Occupational Therapy Practice Framework: domain and process. 4th edition. North Bethesda, MD: American Occupational Therapy Association.
‘Advocacy’ (2025) Cambridge Dictionary. Available at: https://dictionary.cambridge.org/dictionary/english/advocacy#google_vignette. (Accessed: 28 July 2025)
Carers UK (2024) Being heard – a self-advocacy guide for carers. London: Carers UK. Available at: https://www.carersuk.org/media/4ahpa34k/cuk-self-advocacy-guide-2024-england.pdf (Accessed: 30 July 2025)
Cornett, A. (2023) ‘The importance of self-advocacy’, IG Living (August-September) p6. Available at: https://www.igliving.com/magazine/articles/IGL_2023-08_AR_The-Importance-of-Self-Advocacy.pdf (Accessed: 30 July 2025)
Di Bon, J. (2022) EDS patient advocacy with Maggie Buckley – Finding your range S2 E11 [Podcast]. 10 April. Available at: https://www.youtube.com/watch?v=BfaOucXOqd0 (Accessed: 29 July 2025).
Schmidt, E.K., Faieta, J. and Tanner, K. (2020) ‘Scoping Review of Self-Advocacy Education Interventions to Improve Care’, OTJR: Occupational Therapy Journal of Research, 40(1), pp. 50–56. Available at: https://doi.org/10.1177/1539449219860583.
