Self-Advocacy
Advocating for oneself in health issues can be very important for ensuring you receive the best possible care, but first:-
What is ‘advocating’?
It's being able to speak up for yourself rather than relying on others – having the confidence to say or do something when you don't think something is right, or when something needs reviewing, or changing. Sometimes this is called self-advocacy and when it comes to our health that can really be important!
Have a goal!
What do you want to achieve?
This could be something as simple as ‘understanding what is said to you’, or to ‘get a referral to a specialist’. Or, more complicated such as ‘a change to medication’ or ‘get an explanation on a report’. Be realistic in your choice. It helps to decide your goal or target before you tackle self-advocating.
Sometimes it is better or easier to have a close friend, carer, or relative advocate for us, we may be ill or too weak or disabled to be able to self-advocate in which case perhaps suggest they read this post or share the information with them to help both of you advocate successfully.
Being disabled or ill with a condition can mean we feel very vulnerable and unable to support ourselves effectively in what can seem to be a very stressful situation like a doctor appointment. That is when preparation can be key to feeling like we have achieved the best.
Sometimes we may lack the confidence we need to make the best decisions and that is when learning as much as we can about our disability, condition, or mental health issues really can reap benefits.
Here are some strategies to help you effectively advocate for yourself:
1. Educate Yourself
Understand Your Condition: Research your health condition thoroughly. Use reputable sources such as medical journals, trusted health websites (like Mayo Clinic or WebMD), and patient advocacy groups.
Know Your Medications: Learn about the medications you're prescribed, including side effects, interactions, and the reason for taking them.
2. Communicate Clearly
Be Honest and Open: Clearly describe your symptoms, concerns, and how you're feeling. Don't downplay or exaggerate your condition.
Ask Questions: If you don't understand something, ask your healthcare provider to explain it in simpler terms. Questions like "Can you explain that again?" or "What does that mean?" can be very helpful.
3. Be Organized
Keep Records: Maintain a detailed health journal with your symptoms, medications, and any changes in your condition. Bring this journal to your appointments.
Prepare for Appointments: Make a list of questions and concerns before each visit. Prioritize the most important issues to ensure they get addressed.
Take Notes: During the appointment ask if you can take notes so that you remember clearly what is said, or ask a friend or family member to come with you to do this so you can concentrate on what is said and carefully choose a reply.
4. Build a Support Network
Bring an Advocate: Consider bringing a trusted friend or family member to appointments to help you remember information and provide emotional support.
Join Support Groups: Connect with others who have the same condition. They can provide valuable insights and support.
5. Know Your Rights
Patient Rights: Familiarize yourself with your rights as a patient. This includes the right to informed consent, the right to access your medical records, and the right to a second opinion. (not applicable to all countries so please check yours!)
Insurance and Coverage: Understand your health insurance policy, what it covers, and your rights regarding appeals and grievances. If you are in a country that does not routinely need health insurance then look at the applicable information such as ‘PALS’ in the UK,
Research your Doctor: hospital, or clinic. Know what they can and can’t do for you. Look at their website and read all the information there to familiarize yourself with their stance.
6. Be Assertive, Not Aggressive
Advocate Assertively: Assert your needs respectfully. Use “I” statements like “I need more information about...” or “I’m concerned about...” to communicate without seeming confrontational.
Be Polite: use please and thank-you when needed.
Set Boundaries: If a healthcare provider is dismissive or not listening, it’s okay to seek a second opinion or switch providers.
7. Utilize Resources
Patient Advocates: Many hospitals have patient advocates who can help you navigate the healthcare system.
Online Resources: Use online tools and resources for additional support, such as telemedicine services or patient advocacy organizations.
8. Follow Up
Clarify Instructions: Before leaving an appointment, make sure you understand the next steps, including any follow-up appointments, tests, or treatments.
Monitor Progress: Keep track of your progress and any changes in your condition, and report these to your healthcare provider. Use that journal to keep notes of pain or mobility and your condition.
9. Self-Care and Mental Health
Take Care of Yourself: Maintain a healthy lifestyle, manage stress, and seek mental health support if needed.
Mindfulness and Relaxation: Techniques such as mindfulness, meditation, and relaxation exercises can help manage anxiety related to health issues.
Conclusion
Advocating for yourself in health matters involves being informed, organized, and assertive while maintaining respectful communication with healthcare providers. By taking these steps, you can play an active role in your healthcare and improve your overall well-being.
But. . it isn’t always easy, in fact it can be quite challenging at first. It also takes a strong will to advocate and when we are facing a health problem that can be the last thing that we want to face.
Thoughts For You:
✅ Please share with us your experiences of self-advocacy.
❔Have you tried it, how did it work out?
💡 What tips can you share to help others have a better experience, please share them here.
💭 Might you try this approach in the future?