Pippa Stacey on living with chronic illness rather than ‘overcoming’ it
“During my first year of university, I was your typical student: studying hard, partying harder, […] generally living my best life. By the same time the following year, I was struggling to stand up on my own.”
Image via Pippa Stacey
Seconds after hearing 27-year-old chronically ill blogger Pippa Stacey first speak, her confidence quite literally radiated through my laptop screen; not only was I fascinated by what she was saying, but also by her self-assured poise, and the way she spoke without even the slightest of stutters, on such pressing issues. Although speaking with assertiveness, she still showed such a lightness with her warm Yorkshire accent and a smile.
‘Redefining Success as a Disabled Person | Pippa Stacey | TEDxHolgateWomen’ via YouTube
Her realist, yet sincere demeanor was completely resonated in real life, as she matter of factly told me, “There’s no ‘right’ way to be chronically ill.”
What I immediately discovered by her attitude after interviewing her, is that she wants to see a shift in the way we view disabled people; I couldn’t wait to learn more about this (unfortunately still) taboo topic.
Pippa first began experiencing symptoms of her illness from age 15, however it wasn’t until her second year at university, after a significant relapse, when she was diagnosed with myalgic encephalomyelitis (ME/CFS).
According to Pippa, “ME/CFS is a neurological and energy-limiting condition, that affects different systems in the body and varies a lot from person to person.”
She went from being a busy, sociable university student, who also competed in dance, to having to quickly learn how to adjust to a new lifestyle. As you can imagine, this wasn’t at all easy.
“Adapting to life as a newly disabled student, I often felt so lonely and isolated. I'd find it difficult to talk to anybody, even my friends, about how I was feeling, and yet feel devastated when they didn't somehow magically understand” shared Pippa.
Image via Pippa Stacey
Pippa admitted how the lack of support she found that there was for disabled people, made the adjustment even harder. She often had to fight for herself, as she wasn’t properly accommodated for.
“I distinctly remember being shocked at what little support was available and how much I had to advocate for myself, how hard I had to fight even for the support and adjustments I was entitled to.”
After discovering what more should be out there, Pippa decided to create a resource for those chronically ill like herself. So, in January 2020, she released her debut book titled ‘University and Chronic Illness: A survival guide’.
“After I graduated, I knew that I wanted to create a resource that would fill the gap I so painfully felt during my own time at university.”
Image via Pippa Stacey
This venture has helped many across the country, with some universities using it as a resource to support their students. Pippa also said how moving it was to see parents buying it for their children.
“The thing that always makes me slightly emotional, is seeing parents buy a copy of the book for their child as they head off to start a new adventure.”
Some other of Pippa’s proudest moments include being named one of the most influential disabled people in the UK, working with various brands that she loves, winning several awards and establishing a career in the charity sector.
Image via Pippa Stacey
She has created a community via a blog, with her Instagram page (@lifeofpippa) with over 13k followers.
To many, Pippa would easily be viewed as an inspiration, however one of the things she’s most passionate about, is changing the common discourse that disabled people should be inspirational to others.
“I think the media portrays disability and chronic illness in a very binary way. You have the 'inspirational' people who 'defy' or 'overcome' their illness, either being medical miracles or making themselves unwell to achieve their goals. And then you have the others […] labelled as 'fakers' or even 'benefits scroungers’.”
Image via @lifeofpippa on Instagram
Pippa wants to see a change in the media’s stereotyping towards disabled people, often speaking on this issue via social media and even a TED talk.
“For me, I'd love to see more support in place and emphasis on helping people to live the life they choose alongside their illness in a safe and sustainable way, rather than success hinging on whether or not a person recovers or how much they're perceived to be struggling.”
Image via @lifeofpippa on Instagram
It’s truly amazing the journey Pippa has been on so far; from the lows of being diagnosed throughout one of the hardest points of her life, to creating resources for others and making a stand against stereotypes. However, one of the biggest take aways from Pippa I learnt is that a whole lot more still needs to be done for this community.
She tells me brightly and with optimism, “We have a long way to go, but hopefully with awareness and advocacy people's attitudes towards long-term illness will continue to evolve.”