When Pip became unwell in her 40s, she struggled to find out what was wrong. “I kept tripping over and started to get really bad back pain,” she says. “I went from being able to hike and dance to losing control of one of my legs.”
In 2017, she was diagnosed with hereditary spastic paraplegia (HSP), a rare degenerative condition that affects the brain and nervous system. “The symptoms vary for different people and at the moment there’s no cure,” she says. “My case is complex, with symptoms that include spasticity of muscles, spasms, chronic pain, gastric, bladder and bowel issues, as well as sensory problems, brain fog and losing motor control in my hands.”
In 2020, when lockdown hit, life became harder. “I was living alone in Suffolk and had just come out of a relationship. My dad was dying from cancer so I really went through the wringer,” she says. By the following year, she was starting to feel more comfortable in her own skin and began working as a magazine editor. Pip joined a Facebook support group for people with her condition. “One day, one of the other members suggested setting up a dating group for people with HSP,” she says. “I decided to join for a laugh.”
Before long, her picture caught the attention of Steve. “I live in Iowa and was working in machinery product sales,” he says. “I was diagnosed more than a decade ago, but I had only been in the support group for a year.” Like Pip, his case is severe, and he lives with similar debilitating symptoms. “Simple stuff that everyone takes for granted becomes a logistical challenge or takes double the time to do,” he says. “I thought I would struggle to meet someone, so when the dating group started I decided to check it out. I sent Pip a message as soon as I saw her picture.”
They began chatting online and Steve says there was an instant attraction. “She was interested in what I had to say and the conversation flowed so easily.” They continued to talk online every day for the next six months, before eventually deciding to meet.
In February 2022, Pip flew to the US, booking a hotel close to where Steve lived. “I think my friends were slightly concerned – especially as I can have difficulties travelling. I rely a lot on passenger assistance, but travel gives me so much pleasure, I never wanted to give it up. It’s a real joy, but it is a military operation to plan.”
Steve met her at the airport and they felt there was chemistry between them. “It was a huge relief that he was exactly the same as he was online. We both wobbled into each other for a hug and a kiss,” she says.
The next day, they visited a town on the Mississippi River to see bald eagles. “I took her to a seafood restaurant, because we’d talked so much about English fish and chips. We then spent about 10 days together; it was so easy and felt so right.”
Afterwards, Pip returned to the UK, but they continued their long-distance relationship, enjoying regular FaceTime dinner dates. They continue to visit each other as often as they can, and hope to move somewhere warm together in the future. “This condition makes it very difficult to live in a cold climate because your muscles seize up more in the cold,” says Pip. “It helps that we both understand each other’s condition, and that we get fatigued easily, and that everything takes longer to organise. We are really patient with each other, but we also laugh about it too. I always say I walk like a drunk camel.”
Steve loves that they “walk better” when they are arm in arm and can support each other’s movements. “We can also talk about anything and she picks up on feelings that I can’t put into words. I love that we’re there for each other,” he says.
Pip says she has never trusted anyone as she does Steve. “When I was diagnosed with HSP, one of the scariest things was not knowing what the progression would look like for me,” she says. “There are only two in 100,000 with our condition, so the odds of us meeting each other was very low. Finding someone has made me feel a lot safer about the future.”