The Patient Advocate Grind

Patient advocacy definitely feels like a second job, much of the time. (or full time job. with overtime.) Advocates and patient leaders who have stepped up to this role are working as marketing and communications professionals, whether the realize it or not. Depending on their own advocate brand, they are also taking on work such as policy, mental health, education, and support. Throw in some ‘regular’ life things such as traditional employment, families and relationships, and managing our own health, and it’s downright overwhelming.

I’ve heard the conversation time after time – advocates feel the pressure to support their own communities, work within a larger patient advocate space, and keep up with the conversation. It’s exhausting and can actually lead to a loss of effectiveness and a muddling of communication when it’s not managed and balanced.

The Journey to Advocacy

Let’s take a moment and look at the journey of many patient advocates. After some sort of life-altering diagnosis, there’s a very human experience of a mix of pain and wisdom – a complex ‘new normal’ that patients often recognize is worth sharing in some regard. This, in many cases, starts out as a blog or social channel to either update friends and family, or insert messages into the greater narrative that these patients needed to hear themselves. Without realizing it, patients are masters at finding and filling information gaps. Without realizing it, they are growing into marketers, and creating their own personal and patient brands.

There is a great importance and authenticity to the messages that add to this space. Patient voices provide a perspective that’s vitally important, and can only truly be filled by those that are living with conditions. The greater patient community has recognized the value of this, and the need for this perspective, which is unlike that provided by physicians, caretakers, or any other voice. It’s more of a soft benefit, but patients need to hear the voices of other patients, to be able to emotionally connect and realize they aren’t alone.

In recent years, for a handful of reasons, many of these voices have risen to the top, entered new topics and new mediums, and established leading voices across nearly all health conditions. It’s exciting and powerful to see actual patients leading change and holding places at the tables of decision makers.

This journey often skews towards an organic, versus strategic growth. Regardless, it can be overwhelming to rise to this level and not know quite what to do with yourself.

Fitting Into a Crowded Space

So many patient advocates discuss feeling overwhelmed and on the edge of burnout. It’s intimidating to feel like you have to keep up or your voices is going to be forgotten.

Let’s reframe this and look at it this way:

As a single individual advocate, you’re working hard on your own channels, and looking out into an active space of fellow advocates. You’re seeing content covering just about the full range of topics, across channels. You’ve been there, the idea for a blog post you had 2 weeks ago but haven’t had time to write yet – being covered in a video by someone else. That newest research advancement that you’re planning to talk about as it relates to your community is making its way through social sharing already. Your awareness month graphic is coming together, but so are three other brands’.

As advocates, it’s so important to stop and analyze the scene that you’re looking out at – because you’re not one individual looking out at another individual who is doing more and better – you’re looking at a collection of individuals who are all pieces of the same puzzle, and you’re also in that puzzle. Break it down for yourself, and take a moment to recognize that you’re not getting lost in the grind, your perspective is just likely slightly skewed. It just takes a moment to sort through this and understand that you are likely doing great work, and you’re simply adding to the greater collective voice.

tl;dr: you’re doing great the way you are.

Turning the Grind into Momentum

Learning how to manage this environment and perspective can enable patient advocates to thrive in this space, and manage that overwhelming feeling. This can make a significant difference for protecting mental health and avoiding burnout, while also driving to cultivate a more effective, and thus, powerful voice in the space.

Take the time to breakdown what you’re looking at, and the source of that overwhelming feeling:

• Feeling like you can’t keep up? Take a look at the quantity of voices in that space that you’re looking back at. Who’s doing what? Who is covering what topics? Who is a leader at which channels? You’ll more than likely realize that you’re on much more of an equal playing field than it might seem. Again, you’re doing great as a contributing voice, not someone that’s drowning in the grind.
• Look at the leading voices. It seems like the leaders are just working tirelessly, but more likely, they have just gone through the process of learning to manage work and maintain balance. Do they focus on one, or a few topics? Do they let themselves take breaks from the space? Do they even bring self-care into their narrative? Being effective comes down to many of these things, not by doing all the things, all the time.
• Establish or sharpen your brand. Say it again for the people in the back. ‘Brand’ isn’t slapping your logo across things. It’s the accumulation of all of the perceptions that others have about you. Fostering this doesn’t dilute you into a corporate mouthpiece, it simply gives your audience a stronger impression of who you are, and what you can do for them. In this case, find the topics, channels, and/or information gaps in your space, and build your communications to grow an authentic and specific voice. Champion your channels and messages, and own your own space.
• It’s time to consider strategy. Taking the time and consideration to sort through brand identity lays a great framework for a more concentrated strategy. As we discussed in the journey, many advocates find themselves at a high level organically, they didn’t necessarily set out to get there. But to stay and succeed, a basic strategy can set you up to do really own your brand and become, or grow as a leader in the space, as well as alleviating some of the fatigue of the grind.