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Three people talk us through what it’s actually like to live with chronic pain…
Chronic pain is a common condition which affects over one third of adults in the UK. It isn’t just a little ache, it can have a big effect on your day, making everything from getting out of bed to enjoying your favourite activities a challenge.
Chronic pain can affect anyone and this gives a high likelihood that you or someone close to you might be living with it. Dealing with it day in and day out can be tricky, but not everyone knows what that’s like.
To shed light on the reality of living with chronic pain, we connected with three people who deal with it regularly.
What is chronic pain?
Chronic pain is a pain that continues for longer than three months. It can be part of another health condition or not have an obvious cause. In some cases, you might feel pain when there’s no damage or harm to your body.
Chronic pain:
• Can’t always be explained
• Isn’t always helped by medicine
• Can make you feel low, overwhelmed or tired
• Can be misunderstood
Meet Alix, Fiona and Liv – three people whose lives have been affected by chronic pain. They all navigate the challenges of chronic pain in their own way, drawing on their coping strategies to navigate life with chronic pain.
The following stories are their personal experiences. If you’re struggling or affected by any of the medical conditions mentioned or chronic pain, make sure to speak to your GP and seek medical help.
Alix’s story
Some people describe living with chronic pain like riding a rollercoaster, with its ups, downs, twists and turns and the constant anticipation of the next dip. For Alix, this metaphor couldn’t be more accurate. At 14 years old, she began experiencing severe, crippling pain in her stomach, which often brought her to the floor in tears. She didn’t know that this would be the beginning of her journey with Crohn’s disease. When she was finally diagnosed, she began trying to understand her condition, learning to manage and control it to reduce the impact of the symptoms causing her pain.
“My flare-ups used to be continuous pain throughout the day, levelling up at certain points. But now, I probably flare on average once every couple of months, lasting anywhere between two days and sometimes two weeks,” Alix shares, showing the progress she’s made in managing her pain.
However, living with chronic pain isn’t just about managing physical symptoms, it’s about navigating the emotional toll it can take on your wellbeing and relationships. From the physical limitations that prevent her from leaving the house or doing certain activities, to the emotional strain of cancelling plans with friends and family, Alix talked us through the challenges she faces.
“It has sometimes prevented me from leaving the house, challenged me to get out of bed, and even just turning over. I’ve had to cancel plans with friends and family because I physically and emotionally couldn’t do it.”
Despite the obstacles, Alix shows that you can still live a fulfilling life with chronic pain. She found coping strategies to help her navigate challenges while trying to live a ‘normal’ life. Her coping strategies include:
• Being kind to herself
• Listening to her body and noticing when she’s coming close to her boundaries
• Reminding herself about the positive things in her life
If you’re struggling with chronic pain or Crohn’s disease, speak to your doctor about a personalised treatment or management plan.
Liv’s story
For Liv, her experiences with chronic pain started when she was 15 and she noticed a persistent discomfort in her ankle. At first, she thought it was from the wear and tear of many hobbies, but as time went on, she spoke to her GP and she was diagnosed with a condition called Os Trigonum.
Living with chronic ankle pain has presented Liv with challenges, especially as someone who enjoys having an active lifestyle. The pain sometimes spreads through her lower leg, making simple activities like walking or standing difficult.
"My specific pain affects my ankles and legs, so it can be quite frustrating as someone who likes to keep fit and be out and about – especially in summer for festival season! If I walk around or stand up for too long, the pain can spread through the whole lower half of my leg, making it really painful to even just walk around!"
Despite the challenges, Liv has learned to recognise her triggers and early signs of the pain getting worse, which has allowed her to adapt her plans accordingly. Whether it’s taking pain relief medicines, resting or doing yoga for relief, Liv has mastered a proactive approach to help her to manage her condition and help her to stay in control of her health and wellbeing.
Liv knows all too well the emotional toll of chronic pain, especially the anxiety and frustration of having to cancel plans or miss out on events she’s been looking forward to.
"It can be really frustrating to have to cancel plans or not attend events you've been really excited for. I've even had a few occasions where I've been quite anxious leading up to a big day, knowing that there's a possibility my pain could flare up and affect what I'm able to do or enjoy,"
Through it all, her journey with chronic pain has taught her lessons about self-care and seeking support. Her advice to other people who are facing a similar challenge is simple but important: “Just talk to the experts. There really is no such thing as a silly question, so just make yourself as knowledgeable as possible so you know what’s going on with your body.”
Fiona’s story
Fiona’s first encounter with migraine left her frightened and confused, she wasn’t sure of what was happening or what to do to help.
"I've suffered with migraines for around 30 years. I can recall the first one – I was visiting a friend at university, I had no idea what was happening and I was scared, didn't know what to do, how long it would last etc.,"
Despite years of trying out different migraine medications, Fiona found little relief. Instead, she relies on avoiding and steering clear of triggers like alcohol and certain foods which make her condition worse.
"Medication doesn't work for me – I’ve been prescribed various migraine medication but nothing stops them evolving and due to having to move or drink to take the tablet I’m violently ill. I just avoid triggers such as alcohol and food triggers. It’s difficult as I feel I’m being punished for relaxing!" Fiona reveals, grappling with the frustrating reality of her condition.
If you’ve been prescribed any medication by your doctor and they aren’t working, make sure to go back to your doctor. They can help you explore different treatment options that may be more appropriate for you.
Staying positive can sometimes be challenging when dealing with chronic pain, but Fiona’s view on life helps her to maintain a positive attitude. “My view is that I’m super healthy and it’s just one thing that impacts me occasionally”.
Top tips
As well as sharing their stories, Alix, Liv and Fiona offered some advice for other people dealing with chronic pain.
“There’s no right or wrong way to deal with chronic pain… try and learn what triggers your pain to get worse… being able to listen to your body and know the early signs will be so helpful later down the line!” – Liv
“Seek your support networks and use them, understand more about what’s causing your pain… try to focus on the thought that there’s something that will help, you just may not have found it yet.” – Alix
“Get to know your symptoms – that way it becomes less scary. Find ways for you that help ease the pain.” – Fiona
If you’re feeling distressed, in a state of despair, suicidal or you feel like you need emotional support because of your pain, you can phone NHS 111 on 111, speak to your GP, the Samaritans on 116 123 or you can text SHOUT on 85258.
Living with chronic pain isn’t easy. If your chronic pain is making you feel overwhelmed, make sure to speak to your GP, especially if:
• You’re not coping with your pain
• You’re struggling at work because of your pain
• Your medication isn’t working
• Your symptoms have changed
• You want to learn more about your pain
• You’re worried or concerned about your pain
So, whether your pain is a rollercoaster like Alix, you’re mastering the art of management like Liv or maintaining a positive attitude like Fiona, know that you’re not alone. Chronic pain affects people in different ways and living with it is about embracing what works for you.
For more advice on managing pain, visit our pain hub.
