Share4Rare toolkit for patient advocacy

Advocacy is an important work that adds a lot to the rare patient community. Without patient advocates, a lot of the progress achieved so far would have been very difficult.

But it is also hard, slow and often disappointing work. Working as a patient advocate in rare diseases means a lot of rejection and a lot of doors shutting in your face.

Crucial synergies are formed which fall apart unexpectedly, a government change brings in new policies which derails much of the work you have done, a medical trial you had been heavily advocating for loses all its funding. These are just a few scenarios that you can come up against in the arena of rare patient advocacy, and they can be quite hard to deal with.

This can start to impact on your mental health. So while you are taking care of the rare patient community, make sure that you are also taking care of yourself. Taking care of yourself is an often overlooked aspect of advocacy. It can be all too easy to forget about your own wellbeing when you hear all the heart-breaking stories, unanswered requests and planning pile up, resulting into stress. In order to help people, you first have to make sure you yourself are in optimal shape. Self-care isn’t selfish!

Photo by Fabian Møller on Unsplash

Below are some tips for coping with the pressure of advocacy which can be used individually or for teams:

• Accept that it’s alright to feel burnt out or that you have reached your limit, and allow yourself some time to regroup your resources mentally.
• Disappointment is built into patient advocacy. Every success will come in the wake of several failures.
• When you hit a wall, remind yourself of the good work you have done so far. The fact that you started is in itself a big positive!
• Keep your goals realistic to limit the scope of disappointments.
• Try not to become disillusioned - if a goal is not working out the way you expected, redesign it or remove it altogether to direct your energy more productively.
• Keep regular space in your life that is free from advocacy - a hobby that’s unconnected to what you do is a good place to start.
• If you find that you are constantly on call from others in the patient community and that this is impacting your well-being, put a limit in place, such as not answering calls after 9 pm or not checking emails after 8 pm. This is not abandoning people who need you, it’s ensuring that you have the energy you need to keep doing what you do.
• Step back - as a rare patient advocate, you may find yourself constantly repeating difficult information about the disease you are advocating for, such as mortality rates, lack of medication etc. If you find that this is happening, step back and ask someone else to carry out your research for a while, represent in your place, or reword your pitch with language that accommodates but does not emphasise the more difficult aspects.
• Open up - other advocates are great people to talk to when you feel you’re burning out.
• Ask for help - if your workload is getting too much, learn to delegate, even if you are a perfectionist.
• Exercise is a proven anti-depressant. When you are struggling mentally with your advocacy, take a break and go out to get some exercise. If this is not an option, do something which removes you entirely from the world of advocacy for a while, such as going to the cinema, a gallery or visiting friends who are neither in advocacy nor patients in your target condition.
• Consider professional counselling as one of your advocacy tools, and use it from time to time even when you are feeling fine to avoid burning out
• Remind yourself of the reasons why you wanted to start advocacy. If you are truly struggling, weigh up the reasons you started with why you want to continue.
• Remember - you are free to stop and take a break.

Requesting support

Even if you want to carry out your role alone, this won’t always be possible. Check out if you can get some support from people in the same arena as you, an umbrella advocacy organisation or a patient support group. There is no harm in reaching out to people who you think advocate effectively and asking for their advice, or even see if they’d be willing to mentor your effort until you find your feet.