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Turning the tide for rare disease

Brace! Brace! Brace… for burnout!

Nicola Miller, editor-in-chief, RARE Revolution Magazine

Brace! Brace! Brace… for burnout!

Brace! Brace! Brace… for burnout! If a plane suddenly lost height or cabin pressure, we would all know (thanks to standard in-flight briefings and safety cards) the procedure: “Place the mask over your own mouth and nose before assisting others,” and the reason is obvious—right? It is well understood that in that moment of urgent need we cannot effectively care for the needs of others without first making ourselves safe.

Social media is awash with well-meaning memes with the old adage “You can’t refill from an empty cup,” and messages about the importance of “self-care” and “me-time”. Even high-profile celebrities and royals are lending their weight to the buzz. The truth is everything in life is better when our cup runneth over, nature’s own batteries are charged, and our energy stores are at maximum capacity. But, and it’s a big but, this simply isn’t the reality for the vast global army of unpaid volunteers within the third sector. Those who commit their everything to rare disease advocacy and furtherance of rare disease causes, who prop up the third sector with their blood, sweat and—let’s be honest—at times, tears.

While some make it into the big league, managing to climb to the heady heights of having paid staff, a vast number of rare disease charities start on the kitchen table or in the car on school drop-off and pick-up, and they continue like this, for years, decades and for some in perpetuity.

Tiny charities: Herculean feats

Outwardly, these smaller organisations are big players—conceiving and delivering award-winning patient and family support programmes, lobbying governments, tackling societal stigmas and injustice through in-school curriculum changes, creating education modules and webinars for healthcare professionals, managing patient data registries, speaking at world congress events and even driving pioneering research—seeing drug discoveries move from bench to bedside in their own lifetime (and the myriad other things I missed out). But behind closed doors, quite staggeringly, these Herculean feats are, more often than not, still being delivered by that founding mum and dad, or family member, or by a micro team of steadfast individuals who refuse to be deterred from their primary objective—but at what cost?

I believe the cost is burnout. Burnout on a large scale across the sector, and the implications of this could be huge.

We all know it to be true, and I think deep down we can all see it coming, but it is an uncomfortable truth because there is no plan B. To address the problem, society and industry need to take a good look in the mirror and reflect on their part in this, and their willingness to turn a blind eye.

The strain on the people behind the charities

As a society, when we are in a time of need, we all want to be able to reach out a shaking hand and know that someone out there will take it and guide us down the path to safety. And that is what thousands of rare disease charities represent to millions of people 365 days a year, year in, year out. But how often does society stop to think about the people behind those organisations?

Industry is banging the drum for patient-centricity and “patients first”, and it wants charities to be the conduit between the families and the boardrooms. Industry wants charities’ insights, their access to patients, and the time and passion of these organisations to propel their research, therapy advancement and PR machines. But how often does it stop and think about the infrastructure behind these organisations and the strain its demands may place on them?

These incredible charities—many of which have been born out of personal trauma and grief—have stepped up and risen to the challenge, and society and industry gladly takes their offerings. Of course, they do—that’s as it should be; this is the reason these organisations exist: they want to serve this space. They want to be the guiding light of hope to a family in need. They want to be the propulsion to breakthroughs and therapies for current and future generations.

But that willingness doesn’t absolve us of moral responsibility for the well-being of these wonderful individuals and organisations.

Peeling back the veneer: living on the brink

If we dared to peel back the veneer, behind the smile and willingness to help at any cost, you will likely find tired mums and dads, husbands and wives, aunts and uncles, friends and family—many on the brink of exhaustion.

These organisations are built by people who juggle their advocacy endeavours alongside the chronic pain and fatigue brought about by their own rare disease, or alongside the extensive and complex care needs of a loved one. They may themselves be grieving a devastating loss, or they may be mourning the loss of the life they dreamed of before rare disease. Odds on, they are also managing their global charity alongside a day job, seeing them working on emails and resources late into the night. Or they may have had to give up their day job to dedicate time to their organisation, plunging them into financial uncertainty.

Behind that veneer, we will find individuals who face, at times, overwhelming guilt. Guilt that this time dedicated to their purpose takes them away from their own families. Guilt that they let that email enquiry slide or didn’t get to that voice message. Guilt that they aren’t doing enough, being enough, reaching enough people, bringing enough progress. 

Then, we throw in the newest curveball for these organisations. COVID-19. 

Fundraising has never been so hard. Volunteer support dropped away during lockdown, yet these organisations had to maintain their services. Someone had to keep the lights on! They had to think on their feet to offer new online activities, services and opportunities to serve their communities, all the while with little to no volunteer support, no funds rolling in, oh, and now possibly bouts of homeschooling too!

We are at breaking point now: it is time for change

We simply cannot in good conscience stand by. We cannot allow these courageous and selfless humans, on whom we all so rely, to reach breaking point before we address this elephant (or zebra if you will) in the room.

Somewhere in the process of moving from being the community to serving the community, something gets lots. Where is the outreached hand to steady those who drive these organisations? Who picks up the phone, or messages them to ask if they need support? Who can they share their personal health fears or professional anxieties with? Who cares for them? But they are the source of strength—they aren’t supposed to ask for help, right? Wrong!

Let’s get real here. This is not a sustainable model for the future.

These organisations need help, and they need it yesterday. 

Take my word for it. I run one of these organisations—while doing my day job at RARE Rev, while being a wife, while being a mother raising two sons, including one with an ultra-rare life-limiting condition. And I feel the strain profoundly every day. 

Brace! Brace! Brace… for burnout!
Volunteering at Teddington Trust Camp
Brace! Brace! Brace… for burnout!
Volunteering at Teddington Trust Camp

The urgent need for a sustainable system

We have to come together to find a model that works, that allows these vital services to be appropriately funded, resourced and supported. We have to engage society and industry to work with these charities in a new way—characterised by partnership and shared responsibility and ownership. We need industry to step up and bring practical solutions to help shore up these organisations, so that they can sustainably meet the needs of their communities in a fast-evolving and increasingly professionalised space. Failure is not an option.

Mark my words, the burnout is coming and it’s coming fast. Now the question is, what are we as a community and our industry friends and partners going to do about it?

I sincerely hope that, together, we can find the answer before the cabin pressure drops and takes us all down… Brace! Brace! Brace.


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