Freelancing With A Chronic Illness: My Fourth Year of Self-Employment

Hello! If this is the first blog post of mine you’re reading, let me briefly introduce myself. My name is Pippa, and around four years ago I made the daunting decision to leave my job employed in the charity sector and wade into freelancing with a chronic illness. These days I’m best known for being a disabled writer, speaker, and communication consultant. Being self-employed with a disabling long-term health condition is no walk in the park, so at the end of each 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, finding my feet in the second year, and keeping things going while experiencing huge personal loss in the year previous to this one. There’s more context 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 other people considering a similar career path or freelancing with a chronic illness find them helpful too. For reference, I am writing this post in Dec 2023, to go live in Jan 2024.

This year is going to be a difficult one to write about. But let’s just get started and see how we go.

Feeling Secure In Insecure Work

As always, may I present you with my majestic annual pie chart? I have various income streams as a freelancer, and this chart shows how much of my total earnings have come from each strand. I’ve labelled things a little differently this year – I’ve used the name ‘disability comms’ to include my ongoing charity sector work alongside similar opportunities that come my way as a disabled communication consultant, I’ve included affiliate marketing income in the ‘influencer/content creation’ slice rather than give it a separate category, and I’ve evolved ‘writing’ to ‘writing and editing’, again to reflect some broader content opportunities that I now say yes to.

Pie chart with four segments. Disability Comms (41.8%), Influencer/Content Creation (37.8%), Writing and Editing (12.2%), Speaking (8.2%).

Overall, I’m quite happy with the split this year. The opportunities I take on within each slice continue to be wide-ranging, but I’m fairly happy with the four labels I feel best describe my work and the percentage each one takes up. I finally feel reassured that new opportunities will continue to find me, and if I want to, I will find them. I’ve worked hard to establish a name and reputation for myself in each of these spaces, and it’s not lost on me what a privilege this is – especially as somebody who isn’t always able to get out of the house and network, or make myself seen, in physical spaces where these introductions are typically made. It’s a relief to not have to allocate as much energy to ‘putting myself out there’ as before, so I can focus more on meaningful work instead.

The Highlight Reel

It makes sense to start with the good, right? I haven’t done the best job of celebrating my wins lately for reasons that will become apparent, so perhaps writing these things down here will help me to recognise them. Because the highs of this year really have been highs, and I never want to take these things for granted.

As always, there is work that I can’t discuss due to confidentiality agreements. But on the ‘day-job’ side of my life, I’ve continued helping make change happen within the organisations I work most closely with. A particular highlight was co-authoring Astriid’s Making Employment Work report – identifying the unique barriers that people with energy limiting conditions face in the world of work. This year I’ve also been working more closely with AccessAble, creating and managing useful online content around accessibility. Additionally, I’ve experimented with taking on ad-hoc projects as a communication consultant, but I’ve found that I much prefer the opportunity to work closely and regularly with the causes and organisations that mean the most to me.

I’ve been fortunate to enjoy a diverse range of opportunities as a disabled influencer this year. They include raising awareness of free support for disabled and chronically ill people, working with tourism boards to review their accessible attractions, and even being sent on an adventure into the North York Moors by BBC iPlayer to explore what ‘Wild Isles’ means to me. Earlier this year I listened to my gut and stepped back from my former talent management agency when some of their internal changes didn’t quite sit right with me. I knew there was no guarantee I would find another manager, but I’m now finding my feet with a new agency and looking forward to seeing how this develops.

This year I’ve had the opportunity to take on more speaking work than ever before, including in-person events as well as online sessions on a range of topics. This includes chatting with university students and staff networks, leading workshops for disabled creatives, and being part of various panels and roundtable discussions. The speaking work peaks significantly during certain times of the year (Disability History Month in December being particularly wild), and I’m still learning how to anticipate this and pace myself accordingly, while remaining present and fully enjoying the experience. It’s still wild to me that speaking of this kind is part of my job.

And as always, I’ve been writing. Writing things you see, writing things you won’t see, writing things you might see one day but with no guarantee. But among other things I’ve enjoyed another year of being a columnist for Passenger Assist, writing articles for print magazines around disability and healthcare, and even being hired by disability charities to fact-check and finesse their online content. Out of everything, writing is the thing I’ll always be doing and always prioritise whether I’m paid for it or not. It’s the one thing I love and value above anything else, but it certainly takes a toll on my physical health. I’m continuing to work hard and experiment with how to make the time and space to pursue the writing as much as I can, at the least cost to my physical wellbeing. If/when I finally find something that suits me best, I’ll be sure to report back.

All The Things I Got Horribly Wrong

Before I dive into my usual dollop of mistakes that have taken place over the last twelve months, perhaps you should have a little bit of context. As always, I set boundaries with what I share online out of respect for myself and others, but this year has been tough beyond words. Not long after losing my Dad in 2022, we unexpectedly lost my Nan-Nan – my last living grandparent. The consequences of this loss have reverberated through my whole family, and led to challenges that span far beyond grief alone. I learned for the first time that heartbreak and the end of a relationship can lead to a unique and long-lasting grief too. I lost three of the most important people in my life in a very short space of time, and carrying this sense of misalignment and isolation isn’t easy.

Working has always brought me comfort and a sense of accomplishment. I know that’s problematic, but it’s true. Work has always given me a means of escapism when I’m feeling insecure and inadequate – it reminds me that I can still do something meaningful. But working life has been topsy-turvy this year too, and I’ve made many erroneous decisions while in the grips of what I now recognise was probably a prolonged state of fight-or-flight. I let people take me for granted and underpay my skills. I watched people use my name to promote their products or further their own agendas (without my involvement), and didn’t feel able to call them out on it. I developed a stress response eye-twitch and spent a day having to start every Zoom call by clarifying I wasn’t winking at all the participants. Would not recommend.

I let an intimidating PR make me cry. I set boundaries only to cast them aside for fear of inconveniencing others. I spent at least six months in denial that my current power-chair is no longer fit for use and has come to a complete stop midway down (never up, bizarrely) my local bus ramp more times than I can count. Many apologies to all the drivers who’ve had to awkwardly help drag me onto the pavement and sincerely wish me luck as I set off on my way. Hopefully a new and less problematic power-chair will be on the horizon next year.

And at a time when the feelings of loss and isolation were at their strongest, I talked about living with M.E. on the national news and experienced a barrage of online abuse.

The Mainstream Media Thing

When you curate your own online space and build up a community of like-minded people, sometimes you forget that the rest of the world doesn’t have the same values you do. I’m sure this is the case for other disabled content creators too. Even though we aren’t a homogenous group, and we all have our unique challenges and opinions, it’s generally the case that people support you and wish you no harm. However, I’ve always been conscious that the online disability community can be something of an echo chamber, and in all my work I aim to try and connect with people outside of this immediate community too.

Being a media case study isn’t new to me – I’ve been doing it for years, usually as a favour to others. However, most of the reports I’ve helped with have had a broad focus on disability, rather than chronic illness or my specific condition. I’m no stranger to receiving harsh words or criticism from people who don’t understand or empathise with my reality, but I’ve never experienced anything like what happened when I spoke on national television about living with M.E.

The piece was in aid of the world’s biggest research study that is currently taking place. As I’m part of the team behind it and assist with their marketing and comms, I said yes when I asked whether I’d be willing to do it – namely in the hope of spreading the word and helping them recruit the thousands of participants needed. I filmed the piece with a great team, and thought nothing else of it until it aired a few months later. Soon after it went out, there came horrific feedback that people thought I looked too happy to have a disabling chronic illness. They couldn’t see outward signs of struggle, so they assumed it wasn’t real. Some commenters decided I was playing chronically ill for the money (seriously, what money?) or some kind of attention, that it clearly wasn’t as life-altering as I said it was because I was typing on my laptop on the sofa with no obvious signs of pain.

Although comments were generally aimed at the M.E. community as a whole, something that sadly we have all come to expect, the abusive comments under social media posts and videos spanned from everything from my appearance, to my actions, to my words. And the part I found hardest of all was that some of them came from people in the M.E. community who felt that the constructive way I chose to phrase things didn’t reflect their own pain, anger, and anguish. People generally don’t know that you usually talk and film for at least two hours for these things, which is condensed down into just two minutes of content. The case study does not get to choose what makes it into the final edit – we share our reality and then it’s out of our hands. Not even the most skilled person in the world could tell the full story under those conditions, but I still feel a barrage of shame and self-hatred at the idea of letting down the people more severely affected than me, the fact that they wouldn’t know that I advocated for them and caveated my own experiences at every possible opportunity. That wasn’t the stuff that made the final cut this time and although that wasn’t my call or something I had any sway over, I still feel partially responsible.

That whole experience took the final shred of self-worth I was holding onto and diminished it completely. I felt completely alone in my personal life, and for once, I couldn’t use work as a coping mechanism because I felt painfully self-conscious there too. Over the last few years my profile has grown and I’ve had a fair few opportunities in the mainstream media – but I know for a fact that, unless it’s as a subject expert or professional, I will never get involved as a media case study again. For a while, I didn’t tell anybody what I was experiencing following this piece going out. But when I felt a bit stronger, I shared what was happening with the news channel and charities involved and I’m pleased to report they were incredibly receptive – they made sure I had what I needed (which was nothing except to feel heard and stop it happening to anybody else), and there is now robust support and safeguarding in place for anybody who takes on similar opportunities in the future.

I lost a lot of my sparkle this year. It’s not easy to say, but it’s true. When much of your work relies on you showing up as ‘you’, and you don’t feel like yourself, it’s a very difficult path to navigate. For a long time, I’ve just wanted to hide away. I’ve seriously considered removing all traces of myself from the internet, walking away from this line of work, and trying to start again somewhere else. For most of this year, I feel like both my personal and my business decisions have been dictated by coping, managing, getting through, making sure everybody else is okay before myself. Right now, I don’t feel like the same bright and ambitious person I was a few years ago when I started out on this freelance journey, the person always forging ahead and ready to take a leap of faith. For the latter part of the year, I’ve also felt less comfortable than usual sharing my reality online, because I’m worried about how my words will be perceived. I regularly feel the need to apologise. For having a platform, for taking up space, for having certain privileges when there are so many people who are more unwell than me. But I’m working on how to transform those feelings of guilt into actions that will better serve everybody, and how I’ll position myself in the disability/chronic illness space going forward. Again, there’s a much broader conversation to be had there – but this post is already so long. Let’s save that for another time.

Finding Silver Linings

Minimising my struggles is something I do by default, but I’m learning that it’s okay to say that this year has felt like a battle. There is much I’ve learned, and much I need to consider going forward. These issues aren’t going to disappear or magically be solved when the clock strikes twelve on New Year’s Eve. But I did want to end this piece on a more positive note, and tell you why I’m going into 2024 with a renewed and genuine sense of optimism too.

In December, right at the end of this year, something took me by surprise. I had several speaking gigs in a row, one a day for consecutive days. If you’ve read my previous posts you’ll know that speaking was never really in my plan or something I prioritised, but taking on these opportunities over those days gave me a glimpse of the spark that I worried was gone for good. Being in those environments and knowing that I’d impacted people left me feeling so fulfilled – like I was glowing from the inside out. And even though things are still incredibly tough, just knowing that the spark is still in there somewhere is enough. It’s still part of me, and it’s my job now to find meaningful ways forward where I can make space for the sorrow and all the ways my life has changed, but also forge ahead and find the joy in this line of work again. It’s there. I know it is. And I’m choosing to believe I still have it in me to make magic happen.

You may remember that I hinted at something at the end of my 2022 post – something I couldn’t tell you about yet, but would be one of my biggest dreams come true. I haven’t shared anything else since then, but it genuinely won’t be long now. In the early months of the New Year, you’ll know about one of my most magical victories to date. Something that I never thought would happen in the way it has. Knowing that something so good has come about even during one of the most painful times is comforting beyond words. It’s been the very best reminder that the highs and the lows are never mutually exclusive. When you’re freelancing with chronic illness, that could be the most important lesson I’ve learned of all.

So, What Happens Now?

Here’s the ironic thing. When I started out as a disabled freelancer, I had one main goal – to one day match what I was earning at my highest point when I was in employment. Taking a significant loss in income was the price I paid for forging a self-employed career, pursuing passion projects and doing the things I love in a way that was slightly more flexible and accommodating of my health condition. And after four years of freelancing with a chronic illness, 2023 was the year I finally achieved that goal. I didn’t only match the highest salary I was earning in employment. This year, I topped it. 

Of course it happened on a year when celebrating any of my wins feels a little impossible. But I did it. And I hope next year’s Pippa reading this post back is in a better place to recognise that this is a big deal and that despite everything, my grit and hard work helped make it happen.

Just as I’ve got here though, everything is about to change again. In January 2024, I’m practicing what I preach and taking some disability leave – a month away from most of my work. I’ll still be working on some personal projects, but I plan to use the extra time and brain space to try and build myself back up and get a better handle on things. And after that, I’ve been given the green light by the main organisations I work with to try out a unique new pattern of working – one that I’ve never seen anybody try before. But given the length of this post, I’m going to tell you more about that and the reasons behind it at another time instead. It’s a big risk, and it will likely have a negative impact on my finances, but there’s a chance it could give me the clarity I’m looking for. And if not, it will have been a learning experience regardless.

At the end of these annual posts, I usually set an intention for my future self. But given that these twelve months have mostly been dictated by surviving rather than thriving, I’m going to carry last year’s forward instead. I need to start thinking about the future, as well as the here and now. How can I make this squiggly career of mine sustainable over the longer term and make sure I can look after myself and others, no matter what life throws my way?

If you’ve read this far, quite frankly you deserve a medal. Thank you for being here, and for listening. No matter what challenges you’re facing at the moment, I hope that this post reminds you that you’re not alone. Despite it all, I still believe there is always a way forward, there is always good to be found, and I’m ready to see what lies ahead next. No period of time is ever all bad or all good. But I’m optimistic that the odds of more of the good stuff are tipped in 2024’s favour. And I very much hope that’s the case for you too.

Where To Next?

4 Responses

  1. I was originally diagnosed with ME 30 years ago at 16 years old, back when it was called “yuppie flu” and GP’s general opinion was that the symptoms were make believe. A few years later I was seemingly fully recovered and went on to do things I could never have dreamed of in those first years. Unfortunately in 2023 my biggest fear came true and the fatigue came back, right now I’m still in survival mode and trying to make sense of what has happened to my life.

    The world has changed a lot in 30 years and I discovered your blog whilst researching mobility aids. I didn’t know anybody else like me when I was a teenager and had no way of connecting with anyone who might understand what I was going through. Being able to read your story has helped me with the feelings of isolation and given me hope that although my world has changed I will be able to take control of my own life again.

    Your bravery in writing about the things that happened to you this year reduced me to tears. Your words do make a difference to people and I’m so sorry that you suffered personal attacks for speaking out and advocating for people like you and I.

    I hope your break in January gives you the space and time you need to build up your confidence again nurture that spark back to life. You’ve made a difference to this person’s life.

    1. I’m so sorry to hear of what you’re going through Hannah, and even more grateful for this comment because I know even typing can drain your limited energy. Thank you so much for your support and kind words, you’ve absolutely made my day xx

  2. Hi Pippa, this post brought tears to my eyes. You clearly have such a good heart and that really shines though. I’m so sorry you have had such a tough year. I wanted to say thank you so much for all you do . Reading about the mainstream media part was devastating. It must feel like so much responsibility being put in a position where you are seen to speak for and represent a whole diverse community. But that is only the case because so few voices get heard. It struck me that just by telling your story and being you that is still one more story out there than there normally is. I’m sorry you went through all of that. You are already doing SO much of value and I hope you can find a way to hold on to that this year and focus on looking after yourself. You doing that is a helpful modelling for all those around you and who follow you anyway. Thank you for being you and sending love. I hope you find your sparkle again soon xxx

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