During the covid pandemic, Rocio Castillero worked as a NHS Covid Responder in Liverpool and saw the sheer level of isolation people living with chronic conditions face. But this was not an unfamiliar situation for her.
Rocio herself lives with long-term chronic illnesses and also found herself housebound during the pandemic. But she is now helping to close this gap between chronic pain and social isolation in Liverpool, passing over the reins to patients so they can find their voice and open up to those sharing the same experiences.
Rocio said: “It was quite interesting because they were not aware that I was in the same situation and in a way it got me into their outlook and I saw many things that I couldn’t believe, I saw a sense of vulnerability that I haven't encountered. ”
“I was a party animal, but I went to somebody who was actually housebound, I couldn't actually get out. And of course, that actually has a massive impact on confidence and self esteem and I deemed myself almost unrecognisable.
"So I thought to myself, if that's happening to me, a person who is generally a confident person, what's going to happen to the other people, you know? I knew something had to be done." Rocio explained.
Rocio began hosting a series of three small virtual meetups via the app Next Door in 2020, and they quickly became popular.
Soon, 746 people from all over the UK were attending her 'Living With Chronic Illness'. meeting. This demand alerted Rocio to the fact that she needed to expand on her concept and create something permanent and in-person. That is how Incurably Wonderful was born.
“When it comes to fundamental things about chronic illnesses, there's always funding for certain illnesses. There are so many other people that are missing out on the information, I want people to actually know that they can have access, and they're not actually alone. I wanted something that was made by patients for patients.” Rocio said.
How chronic pain and loneliness go hand-in-hand
At the start of the pandemic, we all found ourselves isolating. Being trapped within four walls brought different experiences, some found it as a chance to regain time with family and hobbies, others found it more debilitating on their mental health.
Either way, this was not a new environment for chronic pain patients. Social isolation is one of the many challenges for those living with chronic illnesses. Just like pain might be invisible to the naked eye, many patients conceal themselves and find it hard to make connections.
This in turn creates a vicious cycle in which mental health can deteriorate, which then further aggravates symptoms of pain.
Evidence also suggests a 'pain divide' is happening between the North and South of England. According to Versus Arthritis, people living with severe chronic pain are twice as likely to live in the most deprived areas.
As the NHS is still recovering from the devastation caused by the pandemic, there is a lack of mental health support and provisions in place that specifically target chronic pain conditions.
Diagnosed at the age of three with Juvenile idiopathic arthritis, Carolann Cassidy was thrown into a world of pain. Her parents made sure she had a normal, active childhood but by the time she was a young adult, her arthritis had completely swiped her mobility.
“When I was 26 I was working down South as a pub manager and I suddenly had this flare up. My arms and legs just bent and wouldn't straighten." She said. “And after that I was diagnosed with secondary osteoarthritis in my knees and I had a total knee replacement but the first one was done incorrectly.”
Eleven years later, Carolann was diagnosed with fibromyalgia by her rheumatologist but instead of pain signals, it was brain fog caused by her Masters dissertation that eventually led to identifying the condition.
Carolann said: “I was really struggling to find words, the sentences that were written down, it was like I was in high school rather than as a graduate student.
“Fibromyalgia I would say that's been the toughest journey and regarding my health because the others I’ve grown up with, so I've never really known any difference. When this came along it just completely floored me, some days my legs were like cement, I couldn’t even climb the stairs.”
Carolann found herself slowly falling into isolation. She went from having a ‘hostess with the mostess’ attitude as a pub manager to suddenly not having the confidence to leave her house.
But once the pandemic hit, her friends began to reapproach her, as they were now in the same boat, looking to gain advice.
“One of my friends, she lived on her own and was working from home as well. She phoned me and said to me, I get it now, I don’t understand how you can do it every single day, not able to go out and have people to speak to. And I said, that's pretty much how it is, but for me, it's all the time.” Carolann explained.
Carolann, now 48, started volunteering for Versus Arthritis, which led her to the Next Door App, where she saw Rocio advertise an in-person meet-up at the Unitarian Church in Liverpool, one of the locations the group meets at.
“The only time I was leaving the house was to go and get my hair done, and that was my mum encouraging me but I put my big girl shoes on and went down for that first meeting, which was pretty scary.” She said.
But Carolann’s worries soon faded away. As she walked through the doors of the church, she was met with open arms by Rocio and began with a simple icebreaker.
Along with two other ladies, they all grabbed a sticky note and a pen to put their own spin on the ‘who am I game’ to guess what conditions each other had. This helped Carolann to feel comfortable and since then, Incurably wonderful has become her safe haven.
One day, Carolann found it was just her and Rocio. Sat in the Church’s library, with the coal fire warming the room, the two connected on a more personal level whilst exploring the never-ending shelves of books.
Rocio was trying to come up with some new ideas to engage men at the time, which was one of the difficulties she encountered because they were only appearing on the online sessions. But it didn't take long for the two to agree that starting a book club would be a great way to bring in new faces.
Reading in general is a form of escapism, a distraction from reality but one study from the University of Liverpool provides evidence that ‘shared reading’ and literature based intervention is effective for chronic pain patients.
Attendees at the book club are assigned books of various genres to read and return to have an open discussion. Whether it's about the plot or a personal connection to a character, they are able to learn more about themselves as individuals and those around them.
“I have to be honest, I haven't yet finished one of the books that we've read because I can't do it that fast in the month.”Carolann chuckled. “But it's really interesting to hear different people's views and perceptions of topics or the books we’re reading, it’s good fun and I enjoy it and it makes me feel like I've got control of something, I feel useful."
Carolann has continued to grow her new friendships outside of the scheduled meeting times, now she enjoys breakfast every Sunday morning with members of the group where they catch up and share smiles with one another.
“I think it’s quite difficult to develop a relationship as someone with chronic conditions. Especially as an adult because there’s the chance you’re going to wake up and not be able to move and if you let that person down you do feel awful. But if it’s someone else who has a similar experience, there’s no burden.” Carolann said.
Although Rocio launched Incurably Wonderful with the aim of helping people socialise, and to be able to live without the fear of stigma, she is also educating and advocating for a better understanding of chronic illnesses in the public eye, businesses and healthcare providers.
She said: “There is a level of ignorance when it comes to chronic conditions. And with that level of ignorance, unfortunately, comes prejudice. However, I don't see that as a terrible problem, I see that as a leeway to start educating people.”
To push forward this personal mission, Rocio occasionally allows people who don’t live with chronic illnesses to sit in on the sessions to create a level of understanding. There is one particular encounter that stayed in her mind.
“There was a dancer who came to one of the living with chronic illnesses sessions, and he'd never actually had a chronic illness, but when he left he was weeping and said ‘we have had quite a few dancers who ended up being kind of shamed out because of the illness.’” She said.
Rocio is also advocating for change outside of Incurably Wonderful as she tries to break down societal barriers and build better access to public spaces as people living with chronic illnesses and their needs are often being left excluded.
“Before I became disabled, I actually had an invisible disability. I was in pain, but people would not actually see anything but my smile. There has to be more of an idea of how to be able to treat these people.” Rocio explained.
The 2021 UK Disability Survey found that:
31% of disabled people had difficulty using public spaces ‘all the time’ or ‘often’
28% had difficulty accessing public buildings ‘all the time’ or ‘often’
78% had difficulty accessing shops and shopping centres
66% struggled to access pubs, bars, restaurants, and cafes
46% were unable to access or had extreme difficulty accessing medical facilities
“Many of the shopping centres, you'll see that there are no benches, you go to the street, many of the benches have actually disappeared.” Said Rocio. “In Otterspool right now they've taken the benches and put sun lounges. For people who are trying desperately to be mobile, there’s nothing in place for them.”
Rocio also shared that she has had personal experience in the past being discriminated against for using a disabled changing room. Now, it is only her crutches that act as a neon light. But this should not be the case.
Although these issues are still prevalent within society, Rocio has built a community where attendees can simply come and leave their conditions at the door and spend a few hours with like-minded people. She is also hoping to raise enough funds to buy a mini-bus so more of the virtual attendees can be involved.
Rocio said the bond that the group has is incredible: “We had five or six different religions sat at the same table and we can forget about our illnesses and talk about their religion, passion, political views and everything else because we have something very strong that unites us. “
However, Rocio believes that more organisations like Incurably Wonderful should exist and work in collaboration to give people living with chronic illnesses support that will bring them out of the shadows towards wellness.
“There has to be something there that we can all do and instead of actually seeing chronic illness as something that's wrong, see it for what it is, which is actually something that makes us incredibly strong.”
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