Giving Too Much of Yourself to the Cause: A Letter

Dear Community,

I wanted to write this piece to you like a letter to an old friend. It's been too long, and I'm sorry for that.

What have I been up to?

I've been on an extraordinary adventure since I last wrote. I've travelled the world, attending conferences and speaking on stages – having seats at tables I never thought someone with lived experience would command. I've met health leaders, now have doctors following my advocacy work and even experienced having my picture painted in Spain, quite surreally, as part of an awareness campaign for World Psoriasis Day.

I thought it was everything I wanted. Everything I was fighting for. To be a voice for the experiences, the pain and the burden of psoriatic disease for others who were not as fortunate as I. And as this stone gathered moss, I continued to say yes to everything. I felt it was my duty. I felt the weight of the words that came into my inbox from other people living with psoriatic arthritis every single day. The empathy was suffocating.

What changed in my advocacy work?

Something changed in me when I recently found myself in Singapore for yet another meeting, having not slept for three days from jetlag, thousands of miles away from my young family. Without warning, I felt the fire in my belly go out – and with it, a crushing implosion of mixed emotions yet somehow still overwhelmingly dominated by guilt.

Wasn't this where I wanted to be? Am I not the most fortunate advocate in the world? Why am I so ungrateful? What's wrong with me? – were the questions I found myself asking over and over. Then, on the 14-hour plane ride home, and a rare moment for my thoughts, I realized...I was exhausted. I didn't know what day it was anymore, barely what came next after any meeting I sat in, what deadlines were due when, or if I'd even taken my medication that day. I was a mess flying by the seat of my pants.

How has it impacted my life and psoriatic arthritis?

Over the last year, I have ballooned in weight, barely slept, and completely isolated myself from real-world friends. People who supported me long before I was 'Joel the advocate.' People who I’m sure are reading this. I'm sorry.

I've missed my son's sports days and first transitional steps into school, which he starts in September. I couldn't tell you the last time I went for a drink for a friend, to the cinema, or to talk – talk about anything that isn't my relentless mission to raise awareness of autoimmune disease and mental health. Yet this entire time, I barely looked after my own mental health – although I've seen the signs enough to refer myself for another round of Cognitive Behavioral Therapy (CBT), which I am currently halfway through and probably deserves some credit for this recent epiphany.

When you zoom out like that, it's no surprise that I've also had a persistent flare for most of this year. I always tell people 'It's not your fault' when referring to their flares, but I have to accept some of the responsibility on this occasion. In trying to help everyone, I forgot to help myself.

What has been burning me out?

'I only seem to be able to write well when I'm sad' – I wrote in a journal once, and here I am again. Back in your lap, sobbing, hoping for another chance. You see, it wasn't just the work wearing me down. It was what I sacrificed to make room for the meetings, the panels, the travel, and various roles - the very things that started me on this advocacy journey.

How did this all start?

I wouldn't have achieved any of this to date if it were not for the first time I made my private blog public back in 2019. I never intended for anyone ever to read my words because I wrote to keep me well. To help me process, manage and get through to tomorrow. Unashamedly selfishly. And it worked. I almost solely pulled myself out of the worst mental health crisis I had ever experienced that year, initiated by a terrible flare, by writing to an invisible audience — a void.

When there suddenly was an audience – real people with real pain and faces – I felt pressure and passion in equal measure. A passion I had never felt for a cause in my life, and I soared with it. But at some point, the pressure took over. I stopped doing the things I loved, replacing them with things I felt would have the biggest impact for others, and in that storm, I lost myself – what I enjoyed and what kept me well.

Am I writing now?

It's still the early days, but I am writing again. Like a drug, I've reconnected with the warmth of its release. I've reached out to estranged friends, taken tentative steps to finding a hobby and feel closer to my wife than I have in almost a year.

Do I feel guilty about taking my foot off the advocacy pedal? Absolutely. Am I already feeling regret at saying 'no' again? Of course. Am I doing what I need to do for myself at this moment in time to allow me to fight for others another day? 100%.

For those who waited for the old me to return, thank you, I'm coming home. x

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