Looking after yourself as a patient advocate

Lauren Roberts is CEO of RareMinds, a charity which supports the mental health of people living with rare disorders. She has this advice for our learners, which is applicable to patient advocates everywhere.

Patient advocates are often very creative and altruistic, with a high drive to effect change. They often achieve highly despite limited or scant resources. Many work alone, or within a very small team.

Many patient advocates also bring lived experience to the role. While this can bring invaluable insight, it can also mean that successes and failures might be felt more deeply. This empathy and identification can also mean a tendency to over-ride or ignore your own needs whilst prioritising the needs of others.

The passion, dedication and strong desire not to disappoint which leads many to take on the role of a patient advocate can also mean that you’re more likely to sideline your own mental health and wellbeing. Avoiding burnout and prioritising your own self-care must also form part of the picture in order for you to remain engaged sustainably over time.

Mental health and wellbeing is not one thing. Although there may be universal challenges and promoters across different conditions and countries, there are also concerns that are unique and specific to every individual. What feels helpful and appropriate support for mental health and wellbeing for one person may feel less helpful, or less able to be taken up, by another.

Avoiding burnout

The World Health Organisation recognises burnout as a syndrome of ‘chronic workspace stress’. It often involves energy depletion, increased negativity or cynicism, and reduced efficacy.

This can result over time in reduced passion, or personal satisfaction.

What might burnout look like for you?

• Burnout is progressive. Recognise as early as possible if you are ‘on the path’.
• It may not always feel like burnout, or be hard to acknowledge.
• Knowing yourself and your own capacity for, and response to, stress is key.

How you might behave:

• Difficulty in focussing, or task completion
• Fatigue, or insomnia
• Irritability with others, or withdrawing

How you might think or feel:

• Anxious, angry and resentful
• Cynical or detached
• Overwhelmed

Your body might also show you through symptoms such as headaches, or existing health condition ‘flare-ups’.

Avoiding burnout is an ongoing endeavour.

Working with boundaries

Try and set boundaries around your advocacy work.

An internal boundary is your personal capacity to ‘draw a line around’ and give yourself permission for, and importance to your own needs

An external boundary is that which we draw around time, a physical environment, roles/responsibilities and other activities in order to preserve internal boundaries.

Imposing a physical boundary can help support inner boundaries. This could be having a dedicated desk, a cupboard to put your advocacy work away when you aren’t working, or a dedicated office space.

Leave your phone out of reach at night if possible, and have a separate email for your advocacy work.

Be clear in yourself about:

• Time frames – How many hours/days a week can you dedicate to your advocacy work, and how long will tasks take? (‘It’ll just take a minute’ is usually a red flag!).
• The level of commitment you can provide and when you are going to do these tasks.
• Outside your dedicated advocacy work time use voicemail/out of office alerts etc.

REMEMBER: It is better to under promise and ‘over deliver’, than to over-promise and under deliver!

What can make boundaries hard to keep?

We all know that boundaries are important, but they can feel very hard to keep in practice. This might be because we have a desire to be liked, accepted or approved of, or because we have a ‘need to be needed’.

We can all feel guilty when we fall short of others’ expectations – or our own. We might fear someone will be angry, or worry about our reputation.

It is important however, to look after your own needs – as well as that of others.

If a boundary is being challenged you may feel anxious, drained, stressed, angry or resentful.

• Try to notice inner discomfort, conflict, or a sense of pressure or resentment.
• Also notice if you feel excited or flattered.
• Insert a personal ‘cooling off’ period and then make conscious choices and decisions about how to respond.

TIP – Press pause! Try to be curious about how you are feeling, not reactive.

THINK:

• Do I need to respond straight away?
• Do I need time to think how to respond?

Accept your limitations

Managing your time , and other people’s expectations, are both important skills:

• Be explicit: ask people exactly what they want, and say what you want
• Avoid assumptions
• Clarify exactly what you can do and can’t (or won’t)
• Summarise verbally/in writing any agreements or next steps

Tip: Communication is key – if something seems unclear then it probably is!

Remember: Looking after our own mental health and wellbeing is always ‘work in progress!

Rareminds is a registered charity in England and Wales (registered charity no. 1205120 providing specialist mental health and wellbeing services to everyone impacted by rare conditions. Find out more on our website or visit our Wellbeing Hub <www.rareminds.org/wellbeing-hub>.