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Living Life With Psoriatic Arthritis

Updated: Mar 28, 2023

What's it like to live life in chronic pain? How does arthritis and psoriasis manifest itself? What lessons can be learnt from a life where ongoing pain is a daily struggle?

Joel Nelson is an award-winning arthritis and psoriasis patient leader, content creator and consultant, who is deeply passionate about sharing his lived experience with psoriasis.


On a mission to improve support and advocate for those living with arthritis and autoimmune disease, Joel is an International Ambassador for psoriasis, a member of the Health Union Patient Leadership Council and an international public speaker.



Joel is the founder of The Pain Company, a purpose-driven ethical clothing brand that exists to raise awareness of chronic pain and illness, and give a voice to the millions of people around the world that live with daily pain.He’s also a husband, father and the host of Joel vs Arthritis, a podcast, YouTube and Twitch channel where he talks with guests about the realities of living with chronic illness in a candid, no-filter way.


He joins Second Mountain Comms' founder Ben Veal for episode 12 of Good Journeys with Second Mountain, the podcast series that explores the lives of inspired people, to share his powerful, personal story of life with chronic pain.


Episode 12 of the Good Journeys with Second Mountain podcast is out now.


Listen/watch:


PSORIATIC ARTHRITIS ADVOCACY


"Advocacy is about sharing"

Speaking with great honesty and openness on the #GoodJourneysPod, Joel reflects on the rollercoaster ride that he has been on in his life; a life that has been heavily impacted by chronic pain, but not defined by it.


"I'm constantly mourning for yesterday, and worrying about tomorrow," says Joel. "You never get to live in the present: how can you enjoy the present when you don't know how bad your disability or pain will be like tomorrow, and when you're carrying around this baggage of what you had and lost?"


As an advocate, Joel is a powerful voice in the lived experience arena. "The people in their 30s and 40s are a bit of a forgotten bracket in the chronic pain conversation ... we're un-represented; I try and campaign for people who are living with [chronic pain] for a long period of time, who are largely forgotten because the system doesn't support people with long-term health conditions."


COVID-19: SHIELDING DURING LOCKDOWN


"It was a really scary time"

Joel, like so many across the UK and worldwide, was forced to face a hugely challenging period personally when the COVID-19 pandemic dictated that vulnerable people shield in their homes to protect their immune system from the virus. For Joel, this period of 'house arrest' coincided with being a father for the first time.



"From February until the end of August [2020] I never left my house," recalls Joel. "All of a sudden, I was stuck at home with an 18 month old, which were the most magical days looking back as a parent, but all of a sudden, all of those plans you had for them, those trips out and days away [all collapsed] ... the real challenge I had was that everything stopped for people like me [as all the NHS staff were fighting the COVID effort] and we couldn't get access to our drugs, treatment and support."


Several years on, the impact is still being felt by Joel and many immunocompromised individuals who found themselves in such a difficult position during the pandemic. "It was really surreal and the mental scars are still there; I'm still not comfortable going out and socialising ... I'm working through that. Through my advocacy work, I keep reminding people what we went through; that isn't something that gets repaired overnight."


THE CHRONIC PAIN COMMUNITY


"That's a win..."

For Joel, as a proud ambassador for the psoriatic disease community, all mountains climbed - whether big or small - are significant and worth celebrating: "When people think about disability and chronic illness and they haven't got it themselves, they think of the Paralympics or people achieving at the very highest level ... it's important to me to point out to people that it doesn't always have to be at that level. For a single mum with chronic pain, sometimes just getting their child to nursery could be their mountain and their win, and we should celebrate that."



Despite Joel recognising that "the weight of chronic illness can crush you," his positive attitude to the mountains he has had to climb in his life, and his passion for championing and cheering on others, is central to his ongoing #purpose and drive to be an ambassador and advocate for the chronic pain community.


"In a world of Instagram and filters, it's important to have real life and not filtered life. For me, the wins are individual and what's needed is to create a space for open conversation and to celebrate the small wins."


Listen/watch episode 12 of the Good Journeys with Second Mountain podcast now:


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