Self-advocacy – 6 Ways to Get What You Need from Your Healthcare Team

Have you ever asked yourself, “how do I get my practitioner to take me seriously?” and “how can I get what I want and need from this appointment?”

You're not alone.

When it comes to your health journey, who is the person who most frequently speaks on your behalf? Who knows the most about your symptoms, your experiences, your lifestyle and your goals? Who is going to benefit the most from good experiences with healthcare professionals?

You! You are the person who speaks for you every day and who knows what’s going on and where you want to be. You are your biggest advocate.

Self-advocacy is the act of speaking up for yourself effectively. In your healthcare journey, this can help you to receive a diagnosis, and get the support and care that you want and need, when you need it. Self-advocating also improves the healthcare experience and can reduce emotional and financial stresses¹. This makes it an important part of your chronic pain toolkit.

Advocating for yourself can be daunting, especially if you have learned to keep the peace, or if you’ve been knocked back in the past. And, unfortunately, people with chronic pain often experience knock backs when trying to be taken seriously. But, if you shy away from speaking up for yourself, you’re more likely to be stuck with care that does not meet your needs. Although it might be daunting in the moment, knowing that you are getting the best care for you is empowering and uplifting.

What is gaslighting?

Before we go any further, let’s talk about medical gaslighting. What is it? Gaslighting can happen in all sorts of relationships when one person – consciously or unconsciously – attempts to manipulate another, often by making the other person feel confusion and self-doubt.

If your healthcare professional blames your symptoms on your mental health or denies them entirely, be wary. You might have had a doctor imply (or say outright) that you are not sick at all and that it’s “all in your head” because you’re crazy, overreacting, being “a drama queen” or are a hypochondriac. If this is the case, you may be experiencing medical gaslighting.

If possible, seek a second opinion or go to a different practitioner. If you can’t do this – perhaps because you live in a small or isolated area and don’t have a choice – take someone with you to your appointments. Someone who can stand up for you, give you courage, or perhaps encourage better behavior from your practitioner, just by being there!

Here are our top 6 suggestions for effectively advocating for yourself in healthcare settings.

1. Find the right doctor

Choosing a healthcare provider who is a good fit for you is the beginning of your care journey. Ask yourself the following questions about your healthcare provider:

• Do they listen attentively and show me that they hear and understand what I say?
• Can I tell them about any and all of my symptoms and personal circumstances?
• Will they explain things in a different way if I don’t understand what they are saying?
• Will they explain a decision if I don’t agree with them?
• When I am going to an appointment, do I feel relatively at ease, about seeing the person (even if the medical side of the appointment makes you feel a bit tense)?
• Do I leave an appointment feeling respected, hopeful or like I understand what my practitioner is doing?

2. Know what you want

You need to know what you’re asking for before you can ask for it. Reflect on the following questions to crystallize your needs right now.

• What do I want to come away with? This could include answers to questions, a diagnosis, a prescription for a certain treatment or test, a referral or second opinion, or a medical certificate for your workplace.
• What are my main concerns? What things are bothering you the most at the moment? This could be your physical symptoms, emotional distress, problems with how your condition affects your work or home life, or side effects from your medication.
• What tests, results or treatments would I like to discuss?
• What do I definitely not want?
• What questions do I want to ask? What things do I not understand? The more direct and concise, the better.

3. Preparation is key

Go into the appointment ready equipped with the information that your practitioner needs from you. You know your pain and medical journey better than anyone. But have you ever been asked a question by a specialist and drawn a blank? Appointments can be stressful, and can coincide with a pain flare, fatigue or brain fog, and these factors can make it hard to answer questions succinctly.

So, how do you prepare for a consult when you have brain fog or another symptom or experience that makes it challenging? Depending on what you want from an appointment, your practitioner might need slightly different things from you. However, as a base, we recommend tracking the following – your medical and family history, your symptoms (specifics as well as the impact of them on your daily life), what treatments you have tried and how they made you feel.

4. Practice makes perfect

The more clearly and confidently you can speak, the better your results are likely to be. So give it a shot beforehand. If you don’t feel very confident or find it difficult to speak up it can be very helpful to practice what you want to say and find other ways to build up your confidence and skills. Ask a trusted friend or a family member to role play with you. And if you often struggle with confidence or self-esteem, consider addressing those with a counsellor or psychologist as part of your whole person treatment plan.

Remember to be clear and calm, assertive, and be willing to compromise – to a point: You may not get everything you want, but know your non-negotiables beforehand.

5. Curiosity doesn't kill the cat – ask questions

It’s your healthcare journey and there are no stupid questions. If you don’t understand something, it is your practitioner’s job to explain it in a way that makes sense to you.

Here are some questions that you might wish to ask:

• Do I really need this test or treatment? What do we expect this medication or treatment to do?
• What are the risks or side effects? Are there simpler or safer options?
• What might happen if I don’t do anything?
• Have I been taking the medication or treatment for long enough to notice an effect?
• Is the dose that I take, or the time of day I take it, likely to be effective for me?
• Are any of my medications or supplements likely to be interacting with each other?
• Am I on the minimal dose needed to achieve the outcome desired?
• What other treatments might help me? For example, should I work with a psychologist?
• How much will this cost? Can any of it be covered by insurance or government Medicare?
• What’s the best way for me to follow up with you if I have more questions after the appointment?

Remember, it is your right to feel confident with what you are being told and you are not a burden for asking questions.

6. Teamwork makes the dream work – bring a support person

You might like to take a support person who can speak up for you if you find it hard. Support is so important so consider taking an ally to your appointment. This could be a friend or partner who can provide emotional and practical support for you. Someone who knows your needs and can speak up if you start to feel overwhelmed. Someone to help remember the conversation.

Next steps

How confident are you in your appointments? What could you gain by better advocating for yourself?

Get started with our self-advocacy topics that delve further into the world of healthcare settings and how to navigate them with confidence.

If you want to chat with people who have ‘been there, done that!’ when it comes to appointments, doctors and specialists, you may like to join our Living well with fibromyalgia Facebook Community.