Advocating for Yourself in Medical Settings: A Guide for Neurodivergent Individuals

Navigating the healthcare system can be daunting, especially if you are neurodivergent (e.g. have ADHD, AuDHD, or are autistic) or have a chronic illness (like CFS or Long Covid) that causes brain fog or delayed processing. Whether you're visiting a doctor's surgery, attending a hospital appointment, or having a benefits assessment regarding your health (such as PIP), advocating for yourself is crucial to ensure you receive the care and support you need. Here are some practical strategies and tips to help you effectively advocate for yourself in medical settings.

1. Prepare in Advance For Medical Appointments

Taking a list of your symptoms to the doctor can help you to advocate confidently

Preparation is key to a successful medical appointment, especially if you find it challenging to articulate your thoughts on the spot. Here’s how to prepare:

• Make a List of Concerns: Write down all your symptoms, questions, and concerns before your appointment. This ensures you cover everything you need to discuss and helps organise your thoughts. You might also include things you have tried initially to address each concern or what other consultants have said to try that has not worked for you.

• Bring Documentation: It is helpful to carry a folder containing any relevant medical records, test results, or a list of medications you're taking. This information can provide valuable context to your healthcare provider. If you applied for PIP or other health benefits, make sure you have a summarised copy of your application to hand.

• Use a Symptom Tracker: Apps like Bearable or Flaredown can help you track symptoms over time, providing a clear picture of your health. You can also try our free downloadable planner!

2. Use Visual Aids

Visual aids can be incredibly helpful, especially if you experience brain fog or difficulty processing information. Bring along:

• Diagrams or Pictures: If applicable, use diagrams or pictures to explain your symptoms or medical history. This can be particularly useful for explaining complex conditions.

• Mind Maps: Create a mind map to visually organise your thoughts and questions.

• A Visual Log of what you are able to manage each day. See our free downloadable planner to track and manage your pacing, pain, energy and mood.

3. Bring a Support Person

Having a trusted friend, family member, or advocate accompany you can provide emotional support and help you communicate effectively. They can:

• Take Notes: Your support person can take notes during the appointment, helping you remember important details.later.

• Clarify Information: They can help you ask clarifying questions if you're unsure about something the doctor says.

• Provide Moral Support: Sometimes, just having someone there can make a significant difference in your confidence and comfort level.

• Be Assertive for You: It is often easier to be assertive for someone else’s wellbeing than for yourself.
  
  
  
  

Use clear communication and be assertive when expressing your preferences

4. Use Clear Communication Techniques

Effective communication is essential when advocating for yourself. Here are some strategies:

• Be Direct: Clearly state your concerns and what you hope to achieve from the appointment. For example, "I'm experiencing severe fatigue and would like to discuss potential causes and treatments."

• Ask for Clarification: Don't hesitate to ask your healthcare provider to explain things in simpler terms if you're struggling to understand medical jargon. “Please explain how this medication will reduce my symptoms.

• Repeat Back Information: To ensure you've understood correctly, repeat back what you've heard in your own words. This can also help clarify any misunderstandings.
  
  
  
  

5. Set Boundaries and Be Assertive

It's important to set boundaries and be assertive about your needs and preferences. This might include:

• Expressing Your Preferences: If you have specific preferences for treatment or communication style, let your healthcare provider know. For instance, you might prefer written instructions over verbal ones.

• Clarify Side Effects: Don’t be scared to ask what are the side effects of new medication or if there are any herbal or natural alternatives. A lot of medication has awful side effects that isn’t discussed in GP appointments and it is important to be informed as to whether it will exasperate other medical conditions you have.

• Saying No: If you're uncomfortable with a suggested procedure or treatment, it's okay to say no or ask for alternative options. Remember, you're the expert on your own body.

• Asking for Reviews of Medication and Your Medical Notes: Don’t be reluctant to ask for a review of all medication you use to see if any are making any conditions worse.  About one quarter of NHS notes have errors in, which means often patients are prescribed things they do not need or that actually makes their condition(s) worse or have diagnosed conditions missed from their notes (or ones added that aren’t actually applicable!). So asking for a review can ensure you are only taking what is useful for the conditions you actual have. 
  
  
  

6. Request Accommodations

If you have specific needs, don't hesitate to request accommodations. This could include:

• Extended Appointment Times: If you need more time to process information or communicate, ask for a longer appointment. 

• Quiet Waiting Areas: If you're sensitive to sensory stimuli, ask if there's a quieter waiting area available, or bring noise cancelling headphones or ear plugs and ask the receptionist to wave at you when the doctor is ready for you, or for the doctor to approach you  rather than call out your name. 

7. Utilise Advocacy Resources

Several organisations and charities offer resources and support for self-advocacy in medical settings. For example:

• Mind: This mental health charity provides guides and resources on advocating for your mental health.

• The National Autistic Society: Offers advice on accessing healthcare and making reasonable adjustments.

• ADHD Foundation: Provides resources and support for navigating healthcare as an individual with ADHD.

• Solve M.E:  Has some great resources for advocacy for CFS / M.E.

These resources can offer valuable insights and strategies tailored to your specific needs.

8. Follow Up

After your appointment, follow up on any actions or next steps discussed.  If needed, ask for help from a friend, family member or PA. This might include scheduling and booking tests, filling prescriptions,  gathering medical evidence, or booking follow-up appointments. Keep a record of what was discussed and any agreed-upon actions to ensure continuity of care.

Advocating for yourself in medical settings is vital, especially if you experience challenges like brain fog or difficulty thinking on the spot. By preparing in advance, using clear communication techniques, good record keeping, and seeking support, you can ensure that your voice is heard and your needs are met.

If you're looking for personalised strategies and support to navigate healthcare or other aspects of life, I'm here to help.  As a coach specialising in neurodivergent and chronically ill individuals, I can provide tailored guidance to empower you in advocating for your needs. 

Click the button below to book a discovery session and learn more about how we can work together to build your confidence and self-advocacy skills. Let's ensure you get the care and support you deserve, every step of the way!

Please Note:

This website is provided for informational purposes only and does not constitute providing medical advice or professional services. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment.

Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition before making changes. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.