Chronic Illness And Self-Employment: Reflecting On My Second Year As A Freelancer

This time last year, I wrote a blog post reflecting on my first full year as a chronically ill freelancer. The essence of it was that my self-employed life ended up drastically different from what I imagined it would be, and I was prepared for a little of that variability to carry through to this year. However, I didn’t expect I’d be sitting here now (December 2021 at the time of writing), reflecting on twelve months that have once again strayed far, far away from my initial expectations…

If you’re new around here, you may like to read last year’s post, or my piece on becoming a chronically ill freelancer, to give you a bit more context about my background and what I do. In a nutshell, I’m a writer and blogger, who also works in communication consultancy in the charity sector. I have a particular interest in life with energy-limiting conditions, stemming from my own experiences of managing a debilitating long-term illness called ME/CFS, and much of my work centres around inclusive education and employment for people with fluctuating conditions like my own.

As I’ve said many times before, self-employment comes with pros and cons; all the more so when you’re factoring chronic health conditions into the equation. It means a lot to me that other people find posts about my own experiences helpful, so in this one, I’ll be reflecting on my different avenues of work this year. This time, I want there to be less of a focus on the victories, and more of an emphasis on some of the new challenges that have presented themselves… and as always, I’ll be sharing plenty of the things I got horribly wrong. I really believe that acknowledging these things is how we grow, and goodness me, there’s plenty of stuff I need to learn from as we move into 2022.

Charity Sector Work

pie chart showing freelance income streams for 2021. these are charity sector work (41%), blog and social media collaborations (26%), freelance writing (13%), affiliate marketing (6%), PR and consultancy (6%), speaking and events (5%), and books, ebooks and products (3%)First and foremost, I obviously felt the need to make a majestic pie chart again. And from that pie chart, I can see that my predictions were correct – charity sector work still constitutes the biggest part of my income. Interestingly, though, this year even the biggest piece of the pie counts for less than 50% of my total income… even though I’m doing more hours in this area than I was in 2021.

Like I mentioned last year, I can’t imagine a time where I wouldn’t want to continue my work with charities, especially the smaller ones that too often are flying under the radar. There are no words that capture how fulfilling it feels to know you’re using your time and skills in a way that leads to visible change and improves the lives of others – especially when for so long chronic illness has made you question whether there’s anything you really have left to give. That said, this work can simultaneously be frustrating, disheartening, and can even be of detriment to my own wellbeing. All the different areas of my life, personal and professional, are beginning to overlap more and more (as you would imagine when you’re supporting causes you’re personally invested in), meaning setting boundaries and making necessary separations has become even more challenging.

However, the fact of the matter is that small charities need people who are committed to their cause. I can be that, and I want to be that. If anything, I worry I’m becoming too invested. It’s such a pivotal time for so many non-profit areas, and wherever I can add value, I’m all in. I just need to find healthier ways of being all in. That has to be one of my priorities for the start of the year.

Blogging and Social Media

I suspect the change in the percentage of my income from charity work might be due to blog and social media collaborations, of which there have been more this year (especially the latter months of 2021) than I’ve ever had before. I still have strongly mixed feelings about being called an ‘influencer’, but I can’t deny that getting to collaborate with some of my all-time favourite brands has been one of the most enjoyable parts of my work. Being a blogger has opened so many doors for me, and I’ll never not feel grateful to have a gorgeous audience willing to listen to me wittering on about all kinds of things. The fact that affiliate marketing is a sizeable piece of the pie consolidates it all for me, really – it means that what I’m sharing resonates with the community and they trust my voice on the things I choose to promote. That alone is a privilege.

Something I’ve never really spoken about is that over the years, I’ve been approached by various influencer agencies. However, none of them have ever felt like quite the right fit with my values. There have always been the names of a couple of specific agencies in the back of my head – ones I knew I liked and that I’d at least want to have the initial conversation about representation with, when the time was right. This year, one of those agencies approached me. I was over the moon and couldn’t wait to see the contract, and yet from the tone of the emails they sent and on seeing the (frankly quite despicable) contract myself, I knew with everything in me that it wasn’t right. I got myself out of there while I could, and I know now, after speaking with others, that it was 100% the right call. If I’m leaning into the influencer life and all the grey area that comes with it, it’s of utmost importance that I do it with integrity.

I went back and forth over whether to share this next point and how it might be perceived, but partway through this year, I found out I’ve been an absolute mug and I’m radically undercharging for most of my freelance work – especially sponsored social media posts. It didn’t really register at the time because valuing your own work is subjective and varies so much project-by-project, but when multiple PRs (whose job is to ensure cost-effectiveness in campaigns) are telling you that you need to be charging more and literally upping your fees for you, it’s probably time to sit up and take notice. So, there’s that. Know your worth, gang. I’m still not very good at it, but it’s a work in progress.

Speaking, Presenting and Media

Last year, I talked about how I was gently but firmly nudged into public speaking and presenting opportunities by various people in my working life. Last year’s focus was on building up my confidence. This year, bizarrely, these things seem to have become almost become second nature. I think it’s finally clicked that although there’s still so much I need to learn and goodness knows so much I can improve on, there’s no real right or wrong when it comes to speaking about the things you know most intimately. You are the expert in your own lived experience.

In 2020, about 50% of my speaking work was unpaid as I took on opportunities to practice. This year, I reckon that only about 25% was unpaid, and most of that was through choice and on behalf of causes close to my heart. I’ve been lucky enough to lead webinars and events, speak on panels, and provide internal talks and training for various businesses and organisations. Some of the positive feedback from organisers and attendees has brought me to tears, but I’m yet to shake the need to immediately email my contact afterward and tentatively ask ‘was that okay?’. We’ll work on that.

In a similar vein, there seem to have been more opportunities in the mainstream media cropping up this year, that have brought to light a whole new personal challenge for me. Although I have a platform on social media, and social media can only ever show snippets of somebody’s life, I feel confident that my audience have a good sense of who I am and what I stand for. I feel more comfortable putting myself out there, not only because I have editorial control, but because I’m fairly certain that whatever I share will be interpreted the way it was intentioned. Outside of that community, however, in the mainstream media, there’s every chance you’ll be left to the vultures. Anything that gets your message outside of your own echo chamber always feels worth it to me, but with that can come abuse, assumptions, and *all* the unsolicited advice.

As much as I’d love to try and remove that from the picture, I know full well I can’t control other people’s actions. So, if I’m going to continue engaging with these opportunities, and I hope I will, I need to find ways of developing a thicker skin and not bursting into a simmering ball of rage every time somebody gets in touch to explain that I’d be cured from my illness if only I was eating more leafy greens.

More Things That Were Not Quite Ideal

I turned down a big body confidence campaign with a brand I adore because I wasn’t body confident enough to take the photos. Love that for me.

This summer, my dream literary agency announced they were running a breakthrough mentoring scheme for five disabled writers. During the application process, I realised that I wanted this more than I’ve wanted anything for a really long time. Rejection emails are a routine part of my work, but I still haven’t quite bounced back from that one.

I let myself be talked into a working situation I knew full well wasn’t right for me, and I’m still dealing with the consequences of it. The toll it’s taking on my mental health is completely out of the ordinary for me, and yet I still don’t feel assertive enough to speak up and set the boundaries I need.

Increasing numbers of people are lifting words directly from my blog and social media and crediting them as their own. Some even go out of their way to remove my attempts to credit/watermark them. Imitation is flattery, but this is hurting me. I don’t know how to make it stop, either.

And finally, the big one…

Writing Is Breaking My Heart

I’ve found ways of separating the rest of my income streams out from each other, but pretty much all of them involve writing with research elements.  And it’s here where I want to acknowledge something that I’ve spent the last twelve months dutifully trying to pretend isn’t happening, because even thinking about it makes my heart hurt.

I am a writer. I will never sit here and call myself a good writer, but writing is what I love more than anything, and writing is what I want to do. Writing is when I feel most myself, these days. I’m beyond grateful for the opportunities that have come my way and diversified my freelance life, but at the core of all of them, it’s the writing elements that fulfill me the most.

That’s why it’s so painful to acknowledge that over the last twelve months, there has been a significant change in my physical ability to write.

In February this year, I experienced a spell of burnout that completely put to shame what I’d been incorrectly labelling with that word up until that point. It wasn’t complete physical burnout – I was still functioning and able to look after myself – but the first time in my life, everything in me that I give to writing felt completely hollowed out. The words were all there in the back of my brain, but no matter how hard I tried, I couldn’t squeeze them out of there onto paper. I had no choice but to stop trying at all, before the consequences became even more catastrophic. I’d never experienced anything like it before, but in the last twelve months, the same thing has happened another two times, and almost happened a handful more. And the worst part is that I think I know what’s been causing it and why it keeps repeating itself… and yet the things I need to do to resolve it simply aren’t compatible with my current working habits.

Where I’m Going Wrong

Let me try and explain – and let me try and do so without falling into the trap of woe-is-me victim behaviour. While some of this is unavoidable and represents the immense barriers that many, many self-employed people with chronic illnesses have to contend with, the rest is pretty much self-inflicted… and I want others to learn from my mistakes.

The primary reason I became a freelancer was that I wanted opportunities that matched my skills and ambition, that were still flexible enough for me to manage sustainably alongside my chronic illness. In the early days, I think I established that for myself – I wasn’t earning the same as what I’d been earning in employment, but my balance of work, condition management, and life was pretty decent. However, as increasing numbers of opportunities began to present themselves this year, thinking mindfully about the balance went straight out of the window. For the first time, I wasn’t having to hustle to put myself out there – opportunities started coming directly to me. And you bet I was saying yes to all of them. It’s easy to sit there and tell somebody to take on less and say no to things, but when you’re opening emails about projects that make your heart sing and your stomach dip with anticipation, saying no simply doesn’t seem a feasible option. Not for me, anyway.

With that in the back of your head, let me tell you about something else that’s impacted all of this over the last year. Again, I’ve never been my own biggest fan, but what I will say about myself is that I’m diligent; I’ve been told time and time again how easy I am to work with. What I’m about to reflect on here is by no means specific to any one organisation I work with, and it seems to be a challenge that’s followed me everywhere: I’ve become the go-to person when stuff needs to get done.

The positive consequence of that is that I’m able to secure long-term work, and readily earn people’s trust and respect. The negative consequence of that is that naturally, I’ve become the fielder for just about anything and everything people need, at all hours of the day. If people need something done speedily and to a good standard, they come to me, because 1), they know I can pull it off and 2), it’s very unlikely I’ll say no.

And why is that? Because I’m a pathological people-pleaser. And after being this way for 27 years, I really blummin’ need that to change.

screengrab of monia from friends looking anguished, captioned 'i have this uncontrollable need to please people'Something I’ve touched on in previous blog posts is feeling this constant internal need to prove myself. I crave approval, and I fear disappointing people. My brain thinks of these things in very black and white terms, despite the fact that I literally work in inclusive employment and know full well that the grey area is what it’s all about in terms of sustainable wellbeing. It’s just always so much easier to advise other people than apply that advice to yourself, isn’t it?

Anyway, the consequence of all those things led me to a point where I completely lost sight of the balance – not just immediately in the case of burn-out, but also over the longer-term. I may be chronically fatigued, but somehow I still justify putting all of my useable energy into chronically overworking and the sense of accomplishment it brings me. Although I’m not well enough to work full time and I’m still sensible about physical rest, I can’t say the same about the cognitive respite that’s just as crucial for our wellbeing. I spend my days flitting through different jobs with different hats on, bashing out thousands of words on the keyboard, and completely caught up my head. I’ll talk more about that last one another time, but it’s pretty much a case of my brain, my poor old brain, compulsively nattering away at me at all hours of the day.

My Boundaries Yeeted Themselves Into The Void

I reply to 99% of my emails within a day or two, and now, if I don’t manage to do that or even when I have an out of office on, I get chased via call or WhatsApp instead. People assume I can stay on meetings much longer than I’ve agreed, even when I’ve explained that the time limit is for health reasons… while simultaneously thinking it’s okay to cancel on me minutes beforehand when I’ve had to schedule my entire working week around making sure I’m well enough for those meetings. Even my social media DMs are primarily people asking for favours, meaning the only way I can actually create any separation from work is to switch my phone off altogether – something that isn’t realistic for me to do regularly, due to the fact I live alone and digital communication forms the basis of my social life when I’m not well enough to leave the house. Such fun!

So where are we now? The fact of the matter is that so often I’m so consumed by keeping all the plates spinning and fulfilling people’s expectations of me that I don’t always have the mental and physical capacity to write – not just for work, but for me. And that, more than anything, is what I want to change.

Did I Meet My Goal?

Last year, the commitment I made to myself was that I would make the time and space to be creative, and the question I ended last year’s post with was “Are you finding a way to do it all? Is it even possible to do it all and still find the balance and stability you need?”

My answer is that I am finding a way to do it all, and then some, but as for finding the balance and stability? I’m not so sure. And most crucially, the way I’m working now is not the example I want to be setting. I’m not here to glorify over-exertion. If I have some level of influence to help open the world of work for people with long-term illnesses, I have a responsibility to lead by example, figure out how to set realistic boundaries, and normalise accommodating all the under-recognised access needs that come with energy-limiting conditions.

Perhaps that might seem like a fairly obvious and baseline target to some. Maybe you’re surprised to know these things aren’t routinely considered already – and trust me, if I was advocating on behalf of somebody else, I’d be all over it. However, I know that moving into the New Year, it’s going to take some courage for me to squash down people-pleasing-Pippa to advocate for the things I really need. Not just for my condition management, but for my happiness and fulfillment too.

So that feels like a plan and a natural point to wrap things up, right? Not quite. Towards the end of this year, there’s been something of a curveball…

Looking To The Future

In these latter months, something kind of unbelievable has started to happen, that might be about to change the game altogether. I’m not ready to talk about it yet, and it’s safe to say the people involved believe in me far more than I currently do, but if comes to fruition, there’s a chance my career could one day evolve in a new and completely unexpected way. If it does, that’ll mean yet another slice to add to the trusty pie-chart next year, and yet another element to learn how to balance… one that even the thought of scares me more than anything I’ve ever done before, and yet one that I’m still willing to welcome and make space for.

And that’s what all of this boils down to, really – I’ve been very honest about some of the difficulties I’m contending with, but what I can’t emphasise enough is how lucky I feel that the work I do makes me come alive. I’m increasingly thrown headfirst into complex and quite frankly bizarre situations, but it’s because people believe I’ll swim rather than sink. I have opportunities that fulfill me, and that sometimes even help make the world a better place for other people. That’s all I’ve ever wanted. No matter what happens, I’ll never, ever lose sight of that.

I thought my target for next year was going to be being more selective and critical about what I’m taking on, but now that I’ve reflected on everything as I’m sat here typing it, I’m not sure that’s the right fit for this moment in time. Instead, I want to lean into opportunities, but have the confidence and self-belief to be vocal about my access needs, my worth, and my boundaries, so that I can keep on moving forward in a way that’s safe and sustainable for my health. That, quite possibly, might be the most challenging goal I’ve ever set myself – but the most important one of all.

So, 2022 Pippa reading this back, did you manage it? Do you know your worth? Are you more confident in advocating for the things you need to thrive?

Thanks for reading, and here’s to the healthiest and happiest 2022 possible for us all!

Featured/Thumbnail Image Credits: Timm Cleasby Photography

Where To Next?

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