I got asked today by a journalist about how I was able to get myself into the mindset of taking on the Long Covid Support Aotearoa (LCSA) work, on top of the very real and ongoing health challenges I faced. Partially the answer to that question is that this is just how I’m hardwired. But there’s something else too.

Someone suggested to me last week that life is about moving forward and that really resonated with my personal philosophies. I think that sums me up pretty well; life is always throwing challenges (entrepreneurship, divorce, endometriosis, IVF – the list goes on!), it’s been a series of twists and turns (as I’m sure it is for everybody). The only way I’ve ever approached them is head on – the only way out of it, is through it. It’s not in my nature to look back, or to want to go back to, or to regret, or wish for the way things were. I don’t suffer from nostalgia.

Looking ahead is where I’ll be, keeping my eye on what’s next and how I might navigate to it. I’m aware that there is undoubtedly privilege attached to being able to think like that and I know it’s vital that I acknowledge that too. Inequities are what keep me tethered to LCSA, no matter where I’m at in my own journey. Even when I didn’t have more than $30 in my bank account and no backstop (no rich parents here and the reality of being a start-up founder), it just never really made any sense for me to hold pity parties for myself. I had to keep looking ahead, figuring out how to proceed.

Don’t get me wrong, I’ve held more than a few glum-guts-ragers over the past few years and often for far longer than I hoped. There have been times where it’s been a grind to even have the energy to consider thinking about rolling over, let alone how to get out of bed and on with it. And, to be clear, that’s not the purpose of looking forward. It’s not about gaslighting myself, or minimising symptoms, or pretending they don’t exist – none of that will help you when you’re glued to the toilet with GI issues.

But what I knew of myself and my mindset was that I could get in my own way if I let myself – so often my mindset was the only thing that I could (try to) control. At times I had to fight like crazy to hold onto it! I have happily taken assistance medically to help with that too (one of my new meds has a low-dose mood stabiliser in it and it’s been transformative) and I take 5HTP every day (I swear by it). It would be an unfair challenge to expect anyone who has had their life stripped away from them to just ‘figure out a way to get on with it’. That is absolutely not the sentiment.

My philosophy is that by accepting what has happened to me, I no longer yearn for what my life used to look like and I can centre my recovery on a different future. That gives me hope. I actively look for silver linings; even when they’ve been super hard to come by, I have still found them to exist. There’s always something.

Maybe it’s a friend who showed up for you that you didn’t expect, or the loss of one job that made way for another that you actually love more, or a finding of purpose or a deeper understanding of who you are. Those things have all been true for me – getting to know myself better and what I stand for, where I want to spend my time and how I want my life to be. I might not get to control some of the functions – because when you live with autoimmune or chronic conditions, you learn to adapt. Life becomes about something else, the next thing for you.

The life I used to have had a whole raft of things I can’t do now, but that’s OK – I have things now that I didn’t have then.

Everything changes in life, nothing stays the same, and things will pass and evolve. Working on this LCSA project has given me such an incredible sense of purpose – to the point that I wonder if life could really ever be fulfilling unless you’re somehow in service of others. My adapted life is teaching me so much.

Hang in there, it will get better.

Jenene x

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