If you’re new around here, welcome! My name is Pippa and around three years ago, I made the daunting decision to move from employment in the charity sector into self-employment and freelance life as a disabled writer, speaker, and communication consultant. To say that freelancing with a chronic illness is tough is an understatement, so every year I sit down to reflect on the past twelve months to help me look ahead with a clear mind.

Before you read this post, you may find it helpful to scroll through my original post about becoming a chronically ill freelancer. Things have changed a lot over the years, so you may be interested in my first-year reflection and last year’s post too. There’s more about my disability in my chronic illness story, and plenty more about the work I do now elsewhere on the blog. I share these posts not only because I find them useful for my own self-development, but because others find them helpful too.

Chronic illness and work so often go unspoken about, even more so when it comes to self-employment with different roles and freelancing with a chronic illness, and I’m really glad that others find value in reading a little bit about how things work for me… and, as always, all the things I got horribly wrong too. Shall we begin?

Creating a majestic pie-chart of my income streams has become my go-to starting point for these reflective posts, and I don’t mind telling you that this year’s caught me quite by surprise…

Since last year I’ve stepped away from some of my more ‘desk-based’ freelance gigs (e.g. PR and marketing comms) to free up more time and energy for the things I’m most passionate about, so I knew there would be fewer pieces of the pie to start with. However, seeing a visual representation of how my income was split this year confirmed two suspicions that have been in the back of my mind for the last few months. The first is that my speaking work is consistently bringing in more income than my writing work, and the second is that for the first time ever, my influencer income preceded my charity sector comms income. And I have strongly mixed feelings about both of those things.

The Influencer Thing

Something I’ve spoken about before is that I became a disabled influencer quite by accident. Back in the day, when my health first took a nosedive, I turned to social media because I wanted to find other people I could relate to. Seeing so many brilliant people telling their stories made me want to start sharing my own. My social media audience slowly and steadily grew, and in 2017 I launched this blog too – still having no idea that other people made this kind of thing their job. From there, the opportunities to get involved with creative projects and collaborate with brands began to present themselves.

The word ‘influencer’ makes me feel a bit funny sometimes. Partly due to the negative connotations attributed to the word from the wider public, who see a few people with large platforms using them irresponsibly and make assumptions about the rest of us, and partly because it sounds so passive. I don’t want to be a marketing device – I’m a person, with unique lived experiences. I want to add something of real value and substance to the world, the way I assumed would be more doable through my charity sector work than my influencer and content creation work… but this is where the grey area comes in.

I’ve poured so much of my heart into writing and sharing my story over the years, that I steadfastly refuse to cheapen that by taking on meaningless social media collaborations just for the sake of a paycheque. I don’t want to be promoting teeth-whitening kits or skinny teas, especially since much of my audience is made up of brilliant disabled people – if they’re going to use their invaluable time and energy engaging with the posts I share, they deserve to know that even the sponsored ones were created with full integrity. When I first suspected that my influencer income was going to overtake my charity sector income, I had something of a crisis about it. I’m not even going to go into the pay discrepancy between influencer marketing and the charity sector and how it correlates to the time I put into each because the mere thought of it makes me feel a bit depressed, but I felt uneasy at the idea that other people might think that I valued the influencer work more.

However, when I voiced this to a trusted contact of mine, who knows absolutely nothing about the influencer marketing world but who sees the content I create, their response gave me food for thought. They felt that many of my social media collaborations added value to the world too: just in a really different kind of way. I’d never be delusional enough to think that collaborating with brands is something noble that will change the world… but as they put it, I’ve grasped each opportunity, shown up to represent the disability community, and put my own stamp on it. And hearing that made me feel much better.

I’m still very selective in the opportunities I choose to engage with, and instead of mindlessly promoting products that I have no real connection to, I’ve been lucky enough to work with some of my all-time favourite brands on campaigns that make my heart glow. I’ve interviewed amazing disabled authors for publishing houses, highlighted free services and support for vulnerable people, and even helped shape accessible tourism in the UK. I always feel tremendously privileged to be able to engage with these activities, especially because I really enjoy the process, but reflecting on this has really reinforced my desire to make sure that the influencer work I engage with going forward continues to be ethical and adds positive value for others too.

I feel extra grateful for the influencer opportunities I’ve had this year, because to say it’s been a topsy-turvy twelve months would be a severe understatement. As you might remember, my main goal since becoming self-employed has been for my monthly income to consistently match what I was once earning in employment. It’s been three years and I’m yet to achieve that, but at the beginning of 2022, I really thought this year might be the year. For the first few months, I was not only matching my previous income but even exceeding it… but that’s when it all went rather wrong.  

The Dark Side Of Self-Employment

I’ve always been transparent about the fact that self-employment has pros and cons, especially when you have a chronic illness. I find that the flexibility and autonomy that comes with freelance life lends itself well to my condition management and the level of illness I live with now, but this year I found out what happens when your ability to work quickly disappears… and I found out in the worst possible way.

In April this year, my Dad passed away from terminal illness. I set boundaries in what I choose to share online, but during that time, I had my first taste of managing caring responsibilities alongside chronic illness too. And let me tell you, it’s tougher than you could ever imagine. I now have an indescribable level of respect for anybody who is parenting or caring alongside ME/CFS – because the only way I could physically cope during the thick of it was to step away from the vast majority of my work. And when you’re self-employed, no work means no income.

It was during this time that I was reminded all too harshly of some of the benefits of traditional employment – you can book time off without compromising pay, request compassionate leave, perhaps temporarily lean on team-mates or hand over work if a crisis occurs. When it’s just you, juggling multiple freelance projects with multiple contacts, there’s no situation where you can just whack on an out-of-office and turn your attention to the more pressing issue. To free myself at all required handing over work that I was usually solely responsible for, re-negotiating deadlines (something I’ve never had to do before, especially in such uncertain circumstances) and managing working relationships to ensure my rapport with contacts wasn’t damaged by my time away. It was an exhausting thing to take on alongside everything else, and even then, I wasn’t completely free. I remember that I was badly let down by another freelancer at this time, and the day before my Dad’s funeral I was having to conceal immense levels of stress resolving an issue that could have been completely avoided.

It was only after stepping away from work for a month or so that I realised just how much of my career relies on me being in the constant swing of things. Not much of my income is passive – it’s always a case of me showing up and performing at my best. I’m very lucky to have never really had issues with motivation – I love my work, I’m a perpetual people-pleaser, and I find immense reward in doing things as well as I can. I realised that I pretty much spend most of my working life ‘on call’ – I need to be ready and switched on for any opportunity that presents itself, often with a speedy turnaround. I’ve learned (to an extent) how to negotiate that within the context of my chronic illness and managing my fluctuating health condition, but figuring out how to tentatively step back into that world when feeling completely drained and very much not like yourself was a whole other issue.

Again, there are boundaries with what I choose to share online, but the rest of the year has held some significant personal challenges for me too. It’s without a doubt been one of the toughest years of my life, and even now that things are much better, I feel as though I’m carrying an extra heavy weight on my chronically fatigued shoulders. This has been the first time in my life where there have been occasions where I’ve felt as though I don’t have it in me to work or squeeze a single coherent thought out of my head – like the tank has run empty and I have nothing more to give.

The feeling, funnily enough, isn’t quite the same as burnout (which perhaps unsurprisingly, I’m much more familiar with), but I’ve found that I have to approach it just as carefully. It isn’t news to me that much of my happiness and fulfilment comes from personal accomplishments (again, quite problematic), and this year I’ve been forced to confront exactly where that leaves me if the ability to chase after those dreams one day goes away.

And this is the thing. It could very easily go away again. Not only because of life events, but maybe because of my health too. I’m very conscious of the fact that I live with an unpredictable and widely untreatable condition, but I’ve spent the past three years steadfastly refusing to think about what might happen to my career if my health ever takes another nosedive. This year’s events have shown me it might be time to begin thinking about that, and what precautions I can take with the longer term in mind.

Working For Free, Three Years In

On a related note, I’d be lying if I said I hadn’t been affected by the UK’s Cost of Living crisis. I’m not giving it too much airtime here as I’m not suffering anywhere near the level of hardship that other disabled people are, and despite being freelance, I’m lucky enough to earn a regular monthly income through my charity sector roles.

I’m quite ashamed to admit this given that I’m an advocate for equal opportunities, but I’m still doing a lot of work for free. Some of it I’m completely okay with – I work with small charities facing soaring demand, and I genuinely don’t mind volunteering a couple of extra hours where I can. Other situations are more difficult. As the work is confidential, I’m not at liberty to talk about this as much as I would like to, but this year I’ve unexpectedly found myself being given a voice and a seat at some quite prestigious tables. And in many ways it’s epic – I want a seat at those tables and I’m quite proud that I managed to get here. I only wish there was a paycheck to match.

These instances are extra tricky because most delegates are there on behalf of the organisations they’re employed by, meaning meetings and discussions are part of their regular working day. For me, when I’m there as myself rather than on behalf of an organisation that I freelance for, I’m compromising my own time and energy – not only am I not getting paid for attending, I have less capacity for my other paid work too.

Perhaps you’d think the solution would be to just say no to these opportunities, or demand a consultancy fee. However, if you knew more about the work, I think you would understand why that isn’t really an option. If the choice is between having input into influential decisions from somebody with lived experience with chronic illness (especially an Energy Limiting Condition that is still so poorly understood) or not having this input at all, then of course I’m going to do it. I’m by no means the only person capable of it, but I understand that I’m in quite a unique situation – I’ve lived with significant disabling illness for many years but experienced enough improvement to be able to work and engage with opportunities. I’m a decent communicator, especially considering the circumstances of my health condition, and through my charity sector roles, I have a good level of insight to understand both sides of the coin and make meaningful contributions. Maybe one day I’ll be able to negotiate pay, but I don’t see it happening in the immediate future. And that continues to be tough.  

This Is What Was Meant For Me

So, I’ll be totally honest here. I’m three years into self-employment and about to embark on year four. This is no longer a trial run to see if I can hack it – this is the path I’ve chosen for myself and given my all to. However, given the rise in the cost of living and the issues I faced earlier this year, there have been several times in recent months when I’ve questioned whether self-employment is the right path for me after all. Employment once wasn’t particularly accessible to me, but there have been immense improvements in terms of remote, reduced hours and flexible job opportunities over the past couple of years – ironically thanks (in no small part) to Astriid, the main charity I work with for on a self-employed basis. And because of that, for the first time in my whole journey, I’ve occasionally found myself browsing what other roles, in an employed capacity, are out there.

But from having an occasional snoop at these listings, here’s the thing I’ve come to realise more profoundly than ever: I really love what I do. Even if I did get a ‘normal’ job and became employed again, and even if I reaped the benefits of that and most likely began earning more per year than I do as a freelancer, deep down I know I would still want to be doing all the things I do now. I’d want to carry on leaning into influencer opportunities, improving my skills as a speaker, perhaps even exploring more mainstream media opportunities. I’d want to carry on championing small charities that are changing people’s lives. And above all else, I’d be writing. I’d be writing exactly how I do these days, because I can’t not. Whether it’s paid or unpaid, seen or unseen, I don’t feel like myself unless I’m writing.

I know what I’m like. I have absolutely no chill. Even if I had a ‘proper’ job, I’d still be trying to do all the squillion things my heart and my mind want me to do. I wouldn’t be able to let it go. It’s exactly what happened when I was last employed, and it was one of the key reasons I transitioned to the self-employed life. Yes, I might reap the benefits of more support and a higher income if I was employed, but my severe lack of chill means I could very feasibly end up more burned out and unwell than I’ve ever been before. If I still have a shot at taking all of these things that fuel me with purpose and shaping them into an inclusive and sustainable career, then clearly that’s the way forward for me.

I’m not the most patient person in the world, and sometimes when I’m trying to do all of the things all of the time and cursing my limited energy, I forget to give myself credit for getting this far. When I was first diagnosed with my illness, I spent whole nights laid awake in bed worrying about the future and how I would ever support myself. I wish I could tell Past Pippa that one day she’d be named one of the most influential disabled people in the UK, that she’d be published in BMC Neurology as part of a team behind the world’s biggest study into ME/CFS, that she’d log into Instagram and find a blue tick next to her name. Past Pippa wouldn’t have believed a word of it. She would have thought she was dreaming, if she didn’t have such relentless sleep disturbance that the mere thought of dreaming was fairly off the cards.

I’m a long way from the security I need for the longer term, but heaven knows I’m a hard worker, and truthfully, I’ve come further than I ever could have imagined. Regardless of the various existential crises that only seem to be becoming more regular with regard to my career, I still feel like this is exactly where I’m meant to be. This is the path that was meant for me. I have to hold onto that conviction, even when things are tough.

A Year Of Extremes

It’s quite strange to think that even though this has been one of the hardest years of my life and my freelance career so far, this year has contained some of the best things that have ever happened to me too. I’m not a huge believer in signs or fate, but it was during one of the toughest personal lows I’ve ever had to endure that an email landed in my inbox and one of my biggest dreams came true. The process has been slow and steady over many months now, but in this post, I’ve deliberately omitted one other element of my work that has consumed a lot of my time this year and signifies a big milestone moment in my career. It all came about in quite an unusual way, and I can’t wait to be able to talk about it properly with you in the coming months. For me, though, this means everything. I signed my contract in the final weeks of December, which means it’s official: over the next couple of years, I’m pursuing something I’ve secretly dreamed about ever since I was a little girl. Even writing this now, it still doesn’t quite feel real.

I’m writing this piece in December 2022, and my life looks very different from how it did this time last year… in many ways for worse, but in many others for better too. These days I have more to carry than ever before and I’m not going to pretend it’s easy, but I think 2023 is going to be another year of great change. Becoming a chronically ill freelancer, I’ve learned to embrace the unknown, but I think anybody would feel apprehensive about the uncertainty – especially when living with a long-term illness in these wobbly times.

The challenge I set for myself last year was to be more selective in where I spent my time and energy, and I do think I’ve made good progress there. However, I also asked future Pippa whether I knew my worth yet, and whether I had the confidence to advocate for the things I need to thrive. That one is still very much a work in progress. I’m going to carry that mission forward this year, and also combine it with the one that I need to pull my neck out of the sand for and deal with – I need to start thinking more about the future. How can I make this squiggly career of mine sustainable over the longer term, no matter what life throws at me?

I know that my future self will read this reflection at the end of 2023, probably when I’m writing next year’s post, so I’d like this to go on record too: I want to always remember that this year I have survived things that could have utterly crushed me. I can and will thrive, no matter what life throws at me next, and I’ll find ways of doing it as the best, most authentic version of myself that I can be. No matter what my work life looks like or what I do or don’t manage to accomplish, I think handling these last twelve months with my career and my spirit still intact is one of my proudest moments of all. Future Pippa, I hope you’re remembering that.

For now, though, thank you so much for reading. If you’ve found yourself here as a chronically ill freelancer yourself, or somebody considering making the move over to self-employment, I hope this year has been as fulfilling as possible – whatever that looks like for you. I hope you give yourself credit for the things you’ve accomplished, and that you’re able to look ahead with optimism.

If you’re reading this because you’re a fellow nosey person or simply interested in posts like these, I want to say thank you for your ongoing support. Whether we regularly chat online or you’re a silent scroller, I’m incredibly grateful for you, and for the time and energy you’ve given to reading my ramblings. It means more than you will ever know. I hope I can make you proud.

Thank you for reading, and here’s to 2023!

Where To Next?

• My Chronic Illness Story
• Work With Me!
• Finding Accessible Work With A Chronic Illness
• My YouTube Channel
• The Turtle Of Overexertion – A Chronic Illness Metaphor