Follow our practical guide, straight from the experts
If you’re one of the 28 million Brits living with chronic pain, you’ll know the frustration when turmeric and Pilates are pushed as magic cures. The reality is over half of sufferers haven’t found a remedy that helped in the last five years. Alongside are millions of Brits coping with disabilities as well as millions living with chronic illnesses. If you’re struggling — or caring for someone who is — life can be tough. Here, three experts give everyday tips to improve your quality of life.
THE PSYCHOLOGIST
Dr Meg Arroll, author of Tiny Traumas, says: ‘While there’s no shame in wanting a quick fix, the reality is often different. We’re far from one-size-fits-all treatments.’
Boom and bust cycles
Dr Arroll says a ‘boom’ in activity often leads to a pain flare or ‘bust’. While you recover, tasks pile up leading to another ‘bust’. She advises finding your baseline — how daily activity looks when you’re low on symptoms or symptom-free — and introducing adaptive pacing. Diarise tasks into manageable chunks. For example, don’t aim to fold 10 tops, but only fold for two minutes.
Lose the guilt
Guilt is linked to expectations we have of ourselves and is almost never helpful.
‘Examine where those expectations come from,’ says Dr Arroll. ‘If it’s external, like social media, curate a kinder, funnier, more enjoyable feed.’ Give yourself permission to rest or feel sad. See it as an investment in your long-term wellbeing. Instead of rest meaning you failed to do something, see it as a gaining of strength and energy.
THE DISABILITY EXPERT
Inclusion and accessibility consultant Shani Dhanda was born with osteogenesis imperfecta, or brittle bone disease.
She says: ‘It’s difficult to live with a health condition or disability, and it also costs £583 more a month on average. Don’t be ashamed to seek support, including Universal Credit and Personal Independence Payment. Use a free online benefits checker to start.’
Other financial schemes include The Access to Work Government grant, which allows eligible applicants to claim up to £65,180 to help secure or stay in work. You might also be eligible for discounts on road tax and council tax — talk to your council. An Access Card, or ‘disability passport’, costs £5 a year and, once you have it, you don’t have to prove or discuss your disability in detail for providers to help.
Seek advocates and know your rights
Volunteer and paid-for advocates can help you to fill in lengthy benefit forms and know how to articulate your day-to-day experiences in a meaningful way.
Understanding The Equality Act is useful, too. Shani says: ‘I’ve written many letters about everything from discriminatory parking fines to inadequate accessibility at concerts. Charities like Scope have free letter templates on their websites.’
Employers have a duty to make reasonable adjustments — things like a change in hours or equipment — so you’re not substantially disadvantaged at work.
Navigating healthcare
Shani says: ‘Keep every email and letter for benefits or complaints. For calls, log the time, date, person you spoke to and their job role. If they’re recording, request a copy or send them an email summarising what was discussed. Search for “disabled person’s organisation” or DPO for local support.
‘For years, I didn’t know that I could email my NHS consultant’s secretary for support between appointments. Search online for their email or call the hospital’s Patient Advisory and Liaison Service (PALS). Let them do the heavy lifting to find information, chase referrals, appointments and complaints.’
THE EXPERIENCED GP
Dr Chintal Patel says: ‘Long-term pain, illness or disability affects work, life, family, finances and socialising, leading to isolation, depression and anxiety. Long-term medications can lead to dependence or addiction. These all decrease quality of life.’ But simple changes can help.
Even a small amount of exercise has been shown to help chronic pain and improve your mood. Try stretching, chair exercise, a short stroll or movement in water. And talk to friends, family, or a trained therapist to help manage the difficult emotions that come with pain or illness. Sleeping with pain is difficult. Improve your sleep by having a bedtime routine. Limit caffeine, alcohol and late snacking.
Use your GP
Your GP can refer you to NHS pain management clinics, physiotherapy, rehab centres, talking and lifestyle therapies, or organise ‘exercise on prescription’ with individualised programmes.
Dr Chintal says: ‘Never be afraid to ask your GP for help. Maybe we need to change or increase your medication, or taper you off. Please know, you’re not alone.’