Coping with illness, pain and disability

How to cope with chronic pain, disability, and long-term illness…

A practical guide, straight from the experts

By Punteha van Terheyden

As featured in Daily Mirror and Daily Express.

If you’re one of the 28 million Brits living in chronic pain, you’ll know the frustration when turmeric and Pilates are pushed as magical cures.

The reality, as confirmed in a recent survey, is over half* of sufferers haven’t found a remedy that helped their pain in the last five years.

Alongside are the 14.6 million Brits coping with disabilities - this Mirror writer included - and 15 million living with chronic illnesses.

Instead of fad offerings, we spoke to three top experts to bring you tips that may actually improve your quality of life.

THE PSYCHOLOGIST

Dr Meg ArrollCORR, author of Tiny Traumas (on sale 2nd February) says, “There’s no cheat sheet to cope with long term illness, pain or disability and accepting the issues you’re facing can be hard. There’s no shame in wanting a quick-fix, but the reality is often different.

“The medical model works brilliantly if you break a leg, which usually has a clear recovery roadmap. Chronic illness is a different kettle of fish and we’re far from one-size-fits-all treatments.

“Improving a disabled or chronically ill person’s quality of life means dealing with physical, emotional, and social factors.”

Break boom or bust cycles

Dr Meg says a ‘boom’ in activity often leads to a pain flare or ‘bust’. Whilst you recover, tasks pile up. When you’re better, your overwhelming to-do list leads you to another ‘bust’.

The answer is finding your baseline - how daily activity looks when you’re low on symptoms or symptom free - and introducing ‘adaptive pacing’.

Categorise activities (domestic, work, social) and diarise tasks in manageable minute chunks e.g. don’t aim to fold 10 tops, but only fold for two minutes.

Spread tasks, cushioning with rest and recovery time.

Reframing

Society says if we try hard enough we’ll overcome challenges, but with chronic conditions, superhero levels of healing are unrealistic.

“Harmful narratives about our ability to heal ourselves exist because there’s a lucrative industry selling products to people desperate for improvement.

“Fad products, lotions and potions won’t help but breaking your boom and bust cycle will.”

Coping with guilt

Feelings of guilt are linked to expectations we have of ourselves, and are almost never helpful.

“Examine where those expectations come from. If it’s external like social media, curate a kinder, funnier, enjoyable feed.

“And, when guilt creeps in, consider if it’s helping you. If not, it’s a waste of valuable energy.”

Self care

Whilst a support network is crucial, sometimes close people hinder not help. Establish boundaries and learn how to say ‘no’.

We want to avoid upsetting people but don’t be afraid to push back if a social plan isn’t suitable, or take time to figure out if you want to say yes.

Dr Meg says, “We tend to jump ahead and ‘mind read’ - wrongly assuming we know how someone might react. You might worry the person will be disappointed but our reply doesn’t often matter to them as much as we think.”

Forgive yourself

Give yourself permission to rest or feel sad. Seeing it as an investment in your long-term wellbeing will shift your mindset from ‘lack’ (‘I have failed to do something’) to ‘gain’ (building strength and energy).

Combat stress

Stress zaps energy yet we often miss the signs. Watch for sensations in your body like dizziness, palpitations, and tense muscles. You might also feel on edge.

Recognising how your stress looks will help you reduce or avoid stressful situations.

Dr Meg says, “An effective breathing exercise to instantly reduce stress is exhaling for longer than you inhale. This triggers the para sympathetic nervous system and calms the stress response.”

THE DISABILITY EXPERT

Inclusion and accessibility consultant Shani Dhanda was born with osteogenesis imperfecta – brittle bone disease. She says, “It’s difficult to live with a health condition or disability, but life also costs £583 on average more for disabled people a month. Don’t be ashamed to seek support including Universal Credit and Personal Independence Payment. Use a free online benefits checker to see what you might be entitled to.

Other schemes

The Access to Work Government grant allows eligible applicants to claim up to £65,180CORR, depending on their circumstances, to help secure or stay in work. You can request support for job interviews, travelling to work, hire an interpreter, or any equipment you need at work. Backlogs and delays due to covid means the average processing for applications is currently nine months.

Seek advocates

There are volunteer and paid-for advocates who can help fill in lengthy forms for benefits and grants. Advocates know exactly how to articulate your day-to-day experiences in a meaningful way.

Know your rights

Get to grips with The Equality Act. Shani says, “Over the years, I’ve written countless letters to people and companies for everything from discriminatory parking fines to inadequate accessibility at concerts. Disability charities like Scope have fantastic, free letter templates on their websites.”

You can also ask your employer for reasonable adjustments - things like a change in hours or equipment. They have a duty to make sure you’re not substantially disadvantaged at work.

Lack of diagnosis 

Shani says, “It’s a privilege to have a medical diagnosis. For those who don’t, navigating healthcare is even harder.

“Keep records of every email, letter, or call. It could help you with PIP or raising a complaint.

“For calls, keep a log of the time, date, name of the person you spoke to and their job role. If they’re recording, request a copy or send them an email after the call summarising what was discussed.” 

Find communities

Finding a like-minded community can be helpful. Shani says, “Seek content creators who’ve built great communities relevant to you.”

You can also search online for ‘disabled person’s organisation’ or ‘DPO’ - led by disabled people - to find local support.

Navigating healthcare

Shani says, “For years, I didn’t know I could email my NHS consultant’s secretary. Now I don't have to wait to see my consultant annually, instead getting support and answers throughout the year."

Contact information is usually on the hospital’s website, but you can call the switchboard.

Shani says “The Patient Advisory and Liaison Service (PALS) is underutilised at most hospitals. Let them do the heavy lifting to find info, chase referrals, appointments and complaints.“

Use concessions

If you’re disabled you might be eligible for discounts on road tax, council tax, travel, and days out.

An Access Card, known as a ‘disability passport’ costs £5 a year and once you have it, you don’t have to prove or discuss your disability in detail and providers can quickly help.

THE EXPERIENCED GP

Dr Chintal Patel says, “Long term pain, illness or disability affects people in every way - work, life, family. It may also significantly impact finances and socialising, leading to isolation, frustration, depression, and anxiety.

“Long term medications can lead to dependence or addiction. All of these decrease the overall quality of life.”

But there are things that can help…

Set simple goals

Setting small daily targets are beneficial. Set a suitable pace and tick off achievements as you go.

Movement

Exercise has been shown to help with chronic pain and improve mood. Even if it’s a small amount, do what you can as it might help. Don't be put off by the concept - any movement is exercise. It can be stretching, chair exercise, a short stroll or movement in water.

Get talking

Talk to friends, family, or a trained therapist. Vocalising concerns might help manage the difficult emotions that come with pain or illness.

Sleep hygiene

Sleeping when you have pain is often difficult. Learn about ‘sleep hygiene’ and implement steps to improve yours, including having a set bed time and routine. Limit caffeine, alcohol and late night snacks.

Seek referrals

Your GP can refer you to NHS pain management clinics, physiotherapy, rehab centres, talking and lifestyle therapies, or organise ‘exercise on prescription’ with local clinics designing individualised programmes.

Second opinions

You are within your rights to request a second opinion if you feel you aren’t being listened to. Sometimes a fresh pair of eyes can help.

Managing flare-ups

Dr Chintal says, “Never be afraid to ask your GP for help. Maybe we need to increase your medication, or provide other measures to get you through a flare. We can also help with tapering off medication as needed. If medications stop being effective, speak to your GP instead of suffering alone. We may need to tweak doses, change to a different medication, or refer you for support at a pain clinic but please know you’re not alone.”

*A Survey in 2022 by Mamedica asked 2002 people in the U.K. about their chronic pain. 53% of those aged 55+ said they had not found a remedy to help with their chronic condition in the last 5 years. The medical cannabis clinic’s survery also found: 

·      16% of 55+-year-olds say they avoid their GP so they don't get prescribed strong medications for pain

·      53% of 55+-year-olds say they have not found a remedy to help with their chronic condition in the last 5 years

·      84% of 55-64-year-olds say they have accepted physical pain and discomfort as the norm.

Nuffield Health has a free 12-week joint pain wellbeing programme run by specially trained rehabilitation experts, and is well equipped to help people in chronic pain from conditions like osteoarthritis, psoriatic arthritis, rheumatoid arthritis, fibromyalgia, Lupus and undiagnosed chronic pain.

ENDS