5th March 2024 • My Family Our Needs

For the first instalment in our Women’s History Month 2024 series, we talk to Pippa Stacey about her inspiring journey as a writer and advocate, navigating life with a chronic illness.

She highlights the importance of making one’s voice heard in the pursuit of empowerment and advocacy.

1. It’s Women’s History Month! Can you tell us a little bit about yourself and your incredible achievements?

Hello! I’m Pippa, I’m in my late twenties, and I’m from Yorkshire. I acquired my disability as a teenager which has definitely influenced the direction my life and career has taken. I began documenting my experiences of chronic illness on my blog and on my social media platforms which, over the years, has grown and blossomed into a career I love as a writer, speaker and communication consultant.

2. Could you share with us your journey of pursuing higher education while managing your chronic illness?

It was just after my first year of university that my health really took a nosedive. When I returned after the holidays for my second year, I felt like a totally different person. I’m grateful that I managed to go back and finish my degree, but it was incredibly tough – not only the studying and academic side of university but all the other components of student life too. There was so much I learned that I wish I’d had somebody to tell me, so a few years later I ended up writing my first book, University And Chronic Illness: A Survival Guide to hopefully give future chronically ill students more of a leg-up than I had back then!

3. Your blog, ‘Life of Pippa’, has been an incredible platform for sharing your experiences with chronic illness and disability. How has blogging and writing helped you navigate your journey, and how important is it to you that your and other women’s voices are heard?

Finding the online chronic illness community changed my life. It was the first time I found other people who I could relate to – people who were a similar age, managing similar conditions and often with similar interests too. I’ve always been a writer, but seeing people document their experiences and share their tips and advice motivated me to start doing the same. Having a platform to tell your story, in your own words, has been such a powerful way to counteract many of the misogynistic and inaccurate ways conditions like mine have been portrayed in the media in the past.

‘Your needs are valid, you are not being unreasonable and you deserve to be taken seriously‘

4. Could you share with us some of the most rewarding aspects of being self-employed, especially in terms of flexibility, pursuing your passions and overcoming obstacles?

There are definitely pros and cons to being self-employed, especially as a disabled person. But for me, it allows me to build working patterns that suit my condition management and lifestyle. I try as much as possible to pace myself and avoid overexertion, but if I do experience a poorly day, I have much more autonomy to adjust my schedule and take the recovery time I need. Being self-employed has also allowed me to build a career out of the things I love to do. That’s something I’m incredibly grateful for… even though it does make it difficult to stop and switch off sometimes!

5. What do you get up to when you’re not writing?

In my free time, I love reading and going to the theatre. Since I have a power-chair to accommodate my struggles with walking, I also try to plan little adventures when my health allows it – whether that’s travelling to a new town or city for the day or planning mini-breaks with friends. I’m also known for scoping out all the best brunch spots in York where I live… I take my research very seriously!

6. What advice would you offer to other women facing similar health challenges as they navigate their personal and professional journeys?

I know from my own experiences how hard it can be to make yourself heard – whether that’s when communicating with medical professionals about your symptoms or advocating for reasonable adjustments in your place of work. Something that’s really helped me is acquiring the language and vocabulary that can paint a better picture of what life is really like with a disabling chronic illness. If you have a condition similar to mine, you may find the work of researchers like Catherine Hale and Chronic Illness Inclusion helpful. Phrases like ‘energy limiting conditions’ (a specific impairment group that includes an estimated one in three disabled people) and ‘energy impairment’ (an alternative phrase to fatigue to differentiate it from the everyday tiredness that non-disabled people experience) can help you to communicate your reality. Your needs are valid, you are not being unreasonable and you deserve to be taken seriously.

‘I want to make sure that chronic illness is included in the disability advocacy and equality movement too‘

7. We’re very excited about your new book, How To Do Life With A Chronic Illness! Can you give us a teaser? Perhaps a quote or an overview? What message do you hope to deliver with this release?

I’ve loved writing this book! For a long time, the conversation around chronic illness has been deeply embedded in the medical model of disability. The focus tends to be on things like medication, symptom management and treatment (which goodness knows we need more of), but I felt there was a big knowledge gap about how to do the rest of life when you have a long-term health condition. Through the book, I’ve shared my own tips and experiences from areas of life that often go unspoken about – things like managing friendships and socialising, to rediscovering your identity, to adapting your hobbies and finding new interests. Above all else, I hope it helps people to seek out joy and live a life that really feels like theirs, alongside the challenges of chronic illness.

8. Looking ahead, what are your goals for the future, and how do you hope to continue making a positive impact within the community?

One of my goals for the future is to help people with chronic illnesses feel more included in the wider disability community and in the social model. Many of us, especially as women, have experienced so much medical gaslighting that we question whether we’re ‘allowed’ to identify as disabled, or whether energy impairment ‘counts’ as an access need. However, I know from my own experiences just how empowering it is to find a sense of belonging in the disability space and I’d love for others to experience this as well. There are important distinctions between energy limiting conditions and other kinds of disability, but ultimately, I want to make sure that chronic illness is included in the disability advocacy and equality movement too.

---