How to advocate for weight neutral care for PCOS

Being stigmatised and shamed by doctors has become the norm for so many people. Being told to lose weight if you have PCOS without further support is an unfortunate reality for many. Although people shouldn’t have to self-advocate to receive weight neutral care for PCOS it is often necessary in our environment and society to do so. With support from Fat-Positive Fertility Coach Nicola Salmon, we have gathered tips and advice to help you advocate for yourself at your doctor’s appointments.

What is PCOS?

PCOS is a common endocrine disorder that affects approximately 1 in 10 people assigned female at birth. Although the syndrome cannot be cured, it can be managed with medication, supplements and lifestyle changes to improve symptoms, boost quality of life and reduce the risk of other related conditions. Unfortunately, the majority of advice surrounding PCOS management is focused on weight loss and changing your body shape and size.

What does weight neutral mean?

A weight neutral approach to managing health is the idea of moving weight loss to the backburner and working outside of the confines of weight loss or changing your body shape. Instead, the focus is on managing your health through food, movement, medication, supplements, stress management and improving sleep quality, without fixating on weight.

At The PCOS Collective we consider ourselves a weight neutral, non-diet, HAES® informed evidence hub.

Can you manage PCOS without weight loss?

Often, when PCOS is diagnosed, numerous healthcare providers suggest weight loss and dietary changes. However, it’s important to note that dieting comes with several drawbacks, especially concerning PCOS. This includes weight cycling, increased inflammation, worsened insulin levels and even improved the likelihood of eating disorders.

Taking a weight-neutral approach and using methods like Intuitive Eating are likely to help with symptom management. This is because many weight-neutral changes like supplementing with inositol, improving your sleep quality, reducing stress levels and eating more fibre have all been seen to improve PCOS symptoms, whether weight changes or not.

How to advocate for weight neutral care for PCOS

As we’ve mentioned, you shouldn’t have to advocate for weight neutral care for PCOS but that is the unfortunate reality for so many. Here are some of our favourite pieces of advice for people with PCOS before and during the appointment.

Before the appointment

  • If you are able to, choose a practitioner who aligns with the non-diet approach. Check out our PCOS providers directory for some recommendations. Nicola says “Ask around local fat-friendly or PCOS Facebook and community groups asking specifically for recommendations of practitioners that offer weight-neutral support as part of their practice”.
  • You can write your practitioner a letter before the appointment if it feels safe to do so, so they understand your stance before you see them. You can explain your views on nutrition and weight and how you would like them addressed in your appointments.
  • Create an agenda of topics or questions you have for the practitioner. This will help you stay on track if the practitioner tries to lead the conversation to weight loss.
  • Consider taking a supportive friend or family member to the appointment. They may be able to take some of the burden of advocation away from you.

During the appointment

  • You can introduce your stance and alliance to the non-diet approach when you first arrive. Be clear and concise to explain that you’re not here to discuss weight loss and instead would like to discuss issues A, B and C.
  • During the appointment, you may want to use these helpful phrases:
    • Do those in smaller bodies have this health problem? What do you recommend for them?
    • The research I’ve seen shows that the vast majority of people who attempt weight loss fail, and many actually gain weight long-term. Feel free to quote studies you’ve researched.
    • In our limited time together I’d like to focus on [insert symptom here].
    • I am currently focusing on improving my health through sustainable habits.
  • Remember you can refuse to be weighed. There are times when being weighed may be necessary (such as for medication dosage purposes) but you can ask to face the other way on the scales and not to be told the number.
  • Ask your clinician to record details of those instances when they refuse to offer or discuss treatment. This one can be challenging but is important for anti-oppressive advocacy.

After the appointment

  • Nicola highlights the importance of caring for yourself post-appointment. Nicola says “You can spend a lot of time preparing for these appointments but it’s also essential to spend time caring for yourself afterwards. Navigating healthcare appointments can be activating for your nervous system so it’s important you take some time to regulate and care for you in whatever way feels best.”

Key takeaways: How to advocate for weight neutral care for PCOS

Although you should have to advocate for yourself to have weight neutral care for PCOS, it is often necessary. Preparing yourself before the appointment and equipping yourself during the appointment can be helpful to ensure you can access compassionate, inclusive care. Where possible, aim to find non-diet professionals to work with, but we realise this isn’t always realistic. As Nicola says, “Don’t forget, that no matter what happens, you deserve the very best care with your PCOS”.

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Alex Okell ANutr Founder and Editor

Founder and Editor | Registered Associate Nutritionist

  Founder of Be The Collective LTD [The PCOS Collective & The Endo Collective] Alex Okell ANutr is a London-based reproductive health nutritionist with experience in research, private practice and digital media. She holds a Master’s degree in Nutrition from King’s College London and has co-authored papers with the University of Cambridge, King’s College London, The Food Foundation and the Food Standards Agency. Alex offers 1:1 PCOS support in our virtual PCOS clinic.

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