When Lara started experiencing pain in her stomach and chest at the age of 15, she couldn’t understand why, and nor could the doctors at first. She was unable to do sports, she constantly felt nauseous, and when she tried to take Ibuprofen for the pain it would only make it worse. “It hurt so much that I’d lie on the sofa thinking I was going to die” she says, looking back. After a year of tests she was eventually diagnosed with something called gastro-oesophageal reflux disease (GORD), where acid from the stomach leaks up into the oesophagus, leading to regular and severe pain. It’s exacerbated by certain types of painkillers, foods or exercise, and for Lara it took a while to work out which – resulting in total agony.
According to the British Pain Society, 10 million Britons suffer pain daily, impacting their quality of life or ability to go to work. When you look into how many people will experience ongoing pain in their lifetime, the statistics indicate that it could be almost half of us. Pain is usually divided into two categories: acute and chronic. “Essentially that’s about timescale,” says Owen Hughes, a psychologist at the NHS’ Pain and Fatigue Management Centre in mid-Wales. “Shorter than three months is acute, longer is chronic,” he explains. Although he suggests that these terms aren’t always relevant because “pain changes for people on a day-to-day basis – some days people have it, some days they’re pain-free and then sometimes it goes away for a while and comes back.”
This is what Lara experiences today. Almost a decade since her diagnosis, she’s learnt to manage her pain by taking daily medication and avoiding high-risk lifestyle choices, meaning that she only has crippling pain “every now and again” and noticeable pain about “a third of the time”. There are good days and bad days, she says, but she constantly has to worry about how she treats her body and what she puts in it. There’s also the fact that it’s difficult to communicate to people about it; “‘GORD’ isn’t exactly sexy, is it?” she jokes. “When your illness is to do with digestion, you don’t really feel like you can discuss those symptoms because it’s gross, even if you are in pain.”
When we talk about illness and disability, we often talk about it like we can read it on people’s bodies, because they’re older, say, or in a wheelchair, or else because they look sick. However, according to Owen, the biggest challenge for people living with pain, beyond the actual physicality of it, is the fact that it’s often invisible, not just to friends, families and colleagues but to health workers, too. "A lot of pain conditions won’t show up on a scan or an MRI,” he explains, “so as well as taking the biological perspective – ‘How can we get people’s bodies working as well as they can?’ – the social side is really important, too. How do you explain to people you have this condition? How do you respond to people who don’t believe you’ve got one?”
For Aisling, 24, from London, pain affects every part of their life. After experiencing symptoms at 21 they went straight to their GP and asked for a referral. Aisling was then diagnosed with fibromyalgia, which is sometimes known as chronic pain syndrome, and is thought to occur when the body’s nerve receptors are too sensitive. The diagnosis was a relief, in a way, because the pain meant Aisling couldn’t always walk and needed the diagnosis to get a freedom pass. Now Aisling’s on strong painkillers but their condition has worsened over the course of three years: it can take Aisling an entire afternoon to change their bedsheets because the pain leaves them so fatigued. Aisling also can’t work full-time – something which has had a massive financial impact. Aisling is now on disability benefits, but it’s not much to live off.
Talking to Aisling over the phone, it quickly becomes clear that the ramifications of their condition extend to their personal life as well as their professional life: “I have a partner and they do quite a lot of what would be considered care work, like helping me with chores when I physically cannot do it,” Aisling explains. “I rely on them a lot and sometimes it scares me how much.” Then there are the friendships. “When you have to cancel all the time, people stop asking or they aren’t willing to get the Tube to where you live. People don’t understand disability and aren’t willing to make accommodations… my friends don’t see me at home so they don’t see the impact.”
Aisling has had a relatively good experience on the NHS; they point out that while a lot of friends who consider themselves to be fat have just been told by GPs to lose weight, Aisling’s condition was taken seriously by theirs. Aisling then enrolled at a centre like Owen’s, where workshops helped to explain the biology of their condition, and how to pace yourself to reduce fatigue. Lots of specialist pain centres like this do exist on the NHS, says Owen, if not residential then community-based. The problem, he says, is that "not everyone in GP-land knows that these programmes exist.”
Julie, a lawyer, 28, from London, says the most hurtful thing about getting ill with a pain-related syndrome wasn’t always the pain itself but the loneliness; “I would have loved it if people in my life met me where I was at more, I felt really isolated.” Julie suffers from painful bladder syndrome, or intercystitis, which causes excruciating long-term pain to the pelvis and searing pain when you urinate. When you have a really bad flare-up, explains Julie, the whole body aches and you can feel feverish, while lowered dopamine levels make you feel down. Other days, partly due to various medication she’s on (including morphine), the pain fades to a dull mute. “That’s where people misunderstand,” she comments, “they’ll be like, ‘I saw you the other day – surely you’re well enough to do work full-time or to come to the pub?’”
Like Lara, Julie’s pain is very unpredictable, which makes her anxious about how she’s going to feel in the future, or whether this or that action will play a part in exacerbating it. Because painful bladder syndrome can be exacerbated by diet, sex, smoking, alcohol or stress, doctors recommended Julie make lifestyle changes. Giving up those things made her feel more lonely – she couldn’t do all the things her friends could do – and the NHS even gave her counselling to come to terms with the fact she might never have a sexual relationship again. To add insult to injury, because she’d quit drinking and smoking and working long hours at her law firm, when she did see people they’d always say she looked healthy: “It was like they didn’t believe I was ill,” she remembers.
After years of failed attempts by NHS doctors to treat her condition with antibiotics, Julie’s now found a doctor who treats her privately and the condition has become manageable. “I feel lucky because I found a doctor on Google and bullied my private health insurer into paying. I’m a lawyer so I’m good at fighting with them, plus I can pay for ongoing treatment with my job.” The difference is marked: “It makes me so sad when I think about where I was a year ago, I couldn’t hang out with my friends, or have a job, or have a relationship. I thought I was looking at that as a lifelong sentence. To know that was unnecessary and treatable makes me angry.”
Over-archingly, Lara, Aisling and Julie’s experiences demonstrate how pain conditions affect more than just your physical health. For that reason, says Owen, healthcare professionals and friends and families very much need to view pain within a web – “physical and mental and social as a whole” – and, since pain isn’t always measurable, to look at how pain is interfering with a person’s ability to function – if they’re not able to go to work, do the things they want to do with friends or family, well, they probably need help. Lara agrees, adding that if she could tell people one thing she’s learnt from living with pain, it’s that “healthy” and “unwell” are not binaries, but that there’s a lot of space in between.
As for how to treat people living with acute, chronic or persistent pain, Julie recommends just being there for them: “If someone is anxious about their ability to do something fun or even be fun, sometimes they need some coaxing – or offer to go to theirs,” she suggests. “And remember, people who are ill can be spiky or inward-looking because they’re living with the overwhelming feeling that it’s unfair. Don’t take that personally, and be sensitive to the fact that when you’re complaining about your boyfriend or your job or your sex life, the person in pain who you’re speaking to might secretly long to have those things, or just secretly long to be well.”
Aisling feels similarly on this last point: “I would trade anything in my life not to have this pain condition, I can find no upside in it at all.” They adamantly believe that there needs to be space for people to say that and not feel bad about it, while at the same time believing that society needs to do better to meet the needs of people with disabilities – hidden or otherwise. “You can never assume anyone’s health, so give people the benefit of the doubt, whether that’s offering someone your seat on the Tube, or travelling to see a friend in pain.” Their final suggestion is another simple one: “Try to imagine what it’s like being in pain every single second of the day. Because if you’re not disabled, there’s no incentive to go out your way to learn about what disability is like, and that needs to be changed.”