Management · 11 min read · 11 Nov 2021
Helping others understand how to help you
Receiving positive support from family, friends, and others like workmates and teachers can make a real difference to how young people manage their pain.
Learning helpful ways to talk about pain can make a real difference to young people in pain. Understanding pain can be challenging for those who don’t have a lived experience of pain. While most people have good intentions when trying to support young people living with pain, our words can be hurtful or unhelpful.
In the following content, helpful and unhelpful ways of communicating about pain are covered.
This section is for young people living with chronic pain
"People can’t see my pain – how can I help them understand?"
Pain is always real. However, because pain cannot always be seen by others, it isn’t always fully understood by those around us.
In addition, the level of pain that someone experiences isn’t always reflected in the results of medical investigations (ie. blood tests, x-ray findings, tissue injury). This means that young people can experience a lot of pain and not much tissue injury, or a lot of tissue injury and not much pain. Young people can also be experiencing a lot of pain, but their test results don’t reflect major issues. Don’t feel discouraged, or like you’re “making it up” if this happens to you. No one can fully comprehend your experience with pain the way you can.
To make further sense of pain, people need to understand that lots of factors can influence the experience of pain, beyond just body structures. These factors include:
- What we think and believe about the meaning of pain
- How we move when we have pain
- Our fears and worries about pain and life
- Our mood
- Our resilience
- Lifestyle factors such as physical activity and the quality of our sleep
- Our social relationships and connections
- Attitudes and beliefs of the people around us, including our support networks and health team
Understanding the many factors that can influence pain can help people make sense of pain. This short video is a helpful tool for the people around you to better understand pain.
Practical tips on educating others to better support me
Knowing how others can help you when you’re having a tough time with pain, or when you hit a rough patch, is important. Remember, the people who care about you will want to support you.
Sometimes they may need guidance to know how to best support you and what they can do to help. Here are some ideas that other young people have shared with us about how family and friends can help:
- Listening and showing empathy: Young people with pain have told us they don’t expect the people closest to them to have solutions for their pain. Often, what they find to be most helpful is people openly listening to their experiences without judgement. Young people have also told us that feeling believed and empathised with is really important. Consider having a discussion about this with the people closest to you to explain how this can help.
- Getting moving gently with the support of a friend: Movement can be really hard but also helpful when you are living with chronic pain. Movement can help dial the pain volume down when done in a paced graduated way. Try inviting a friend to go with you for a light walk, join you in some yoga, or a gentle swim in the pool, go for a bike ride, kick the footy, or play Frisbee. Check out the module movement with pain for more practical tips.
- Having fun and hanging out with friends: Socialising and being around people who love and care about you is really important for managing pain conditions. It can help lift your mood. Activities don’t have to require a lot of effort or cost. Things you might want to consider include going to the park for a picnic, playing video games, doing an art class together, going on beach walks, watching sport, or doing other activities that give you pleasure.
- Staying connected while taking time out: This can lift your mood and keep you socially engaged. Sometimes you need to rest, especially if you have a pain flare and fatigue is part of your pain story. Letting your friends and family know that you need some time out, but still want to stay in touch is a good idea. Using messaging systems on your phone, or video call functions can ensure you are supported during a rough patch. Alternatively, you may prefer to just hang out and listen to music, watch sports or a movie.
- Finding an appropriate health professional: Our further contacts page provides links to credible pain services and resources to support your care. You might want to consider asking a friend or family member to check out some of the resources to support young people living with pain.
This next section is designed for people who support young people living with pain.
In this section, we give some suggestions for positive ways to support, engage and communicate with a young person living with pain.
If you are a family member, friend, partner or study/workmate, ask your young person about which of these suggestions are most helpful for them. Working in partnership is key.
In this video, young people share their experiences of unhelpful and helpful communication, validation, empathy and support.
Language and pain: Words Matter
Language about pain is one of the most important issues for young people living with pain.
How words are used can have a profoundly positive or negative influence on a young person’s self-worth and wellbeing. Knowing what to say is the first step in knowing how to help young people with pain.
Helpful language is respectful, accurate, inclusive, empowering and not stigmatising or demeaning.
Being listened to, being truly heard, being believed, and having one’s pain acknowledged as real, can make all the difference to young people living with pain.
"Family and friends can make a big difference to young people’s experience of pain"
Words can amplify a pain experience, increase a young person’s worry and can also impact their self-esteem. Words can also promote unhelpful habits: encouraging over-protection, fear of movement, avoidance of normal activities, and prolonged rest or time off school, study or work. These are all well-known factors that are associated with poorer pain outcomes.
Good communication that better supports young people with pain can build confidence and self-esteem and can support young people in getting back to what matters in their lives.
Check out examples of helpful and unhelpful communication in the below table to help you when interacting with young people living with pain. The following content also provides further information on the experiences of young people living with persisting pain and the importance of good communication.
| Young person in pain | Unhelpful family/ friend response | Helpful family/ friend response |
|---|---|---|
| “My pain is killing me – I don’t think I can go to school/work.” |
Issue: Over protective focus “You had better rest up and take the day off.” “Be careful not to move and lift.” Issue: Lacking empathy “Toughen up and get moving.” “Just ignore it and go to school.” |
Re-framing: “It sounds like your pain is really distressing you.” “Have you tried doing some relaxation and gentle movement exercises before you go to school? Let’s do some together.” “Shall we go for a gentle walk before school? Moving usually helps with pain.” “Is there anything that has been on your mind lately?” |
| “I am frightened that because of my pain, doing exercise will damage my body.” |
Issue: Over protective: “Yes, you need to rest up.” “You shouldn’t do any movement or activity that causes pain.” “You need to work on your posture.” Issue: Lacking empathy: “You need to toughen up.” “You’re just weak.” |
Re-framing: “Yeah, pain can be really scary, but relaxing and moving is the best thing you can do.” “Have you tried to gently move and build up slowly – we can do it together?” “Have you checked out the pain stories on this website on how other young people have learnt to get in control of their pain?” |
| “My pain is really getting me down” |
Issue: Over protective: “There must be something really serious going on - we need to get another scan.” Issue: Lacking empathy: “You need to toughen up - you're young!” |
Re-framing: “It’s really normal to feel down when you are in pain and can’t do the things you love to do.” “Let’s do something fun like …….” “Let’s make a time to see someone who can coach you to get back in control of your pain so you can do the things you love.” |
| “I am worried that my pain will never get better” |
Issue: Over protective: “My mum has had pain all her life and ended up on workers comp.” “After having pain for 3 months, it won’t get better.” Issue: Lacking empathy: “It’s just mind over matter.” |
Re-framing: “When you have had pain for some time, it’s really normal to think it will never get better.” “There’s lots of research that shows that back pain can be effectively treated at any age and it usually gets better with time.” “Let’s get you to see someone to help you get in control of your back pain.” |
| “I feel so much pain and yet the doctors say there is nothing wrong with me” |
Issue: Over protective: “They must be missing something.” Issue: Lacking empathy: “If your scan is normal, your pain must be in your head.” |
Re-framing: “The pain is 100% real.” “It’s really confusing to feel so much pain when the scan is normal.” Re-framing: “Like a severe headache – pain can be really intense without there being damage or injury. It’s usually a sign that other things in our life are contributing to the pain.” |
| If your friend has back or neck pain: “The scan says I have a disc bulge and joint degeneration – I am terrified to move” |
Issue: Over protective: “That sounds terrible to have that at your age – you had better be really careful.” Issue: Lacking empathy: “Just ignore it – it's normal in people of your age.” |
Re-framing: “I understand that’s scary, why don’t we try some gentle exercise together?” “Gentle movement can help to reduce stiffness and reduce pain and do some of the things that you love.” |
Understanding the challenges young people living with chronic pain experience
Young Australian people living with chronic musculoskeletal pain experience significant challenges to their quality of life. You can read more about this work here.
The following section highlights some of these challenges and outlines practical tips for how you can engage and support your young person through these challenges.
Challenge: Fearing a life in pain is a common worry for young people
“Just that it [the pain] might not go away… when I’m say 50 or 60 years old… with the arthritis and all that sort of stuff set in, in my back area…”
Practical tip: Openly listen to the experiences of people with pain. Be there for them and sit with them. Do not dismiss their concerns or talk over them or tell them they are too young and shouldn’t have pain.
Challenge: Feeling invalidated and stigmatised about pain when others do not believe them
“…a lot of people don’t sort of believe you. Because it’s not visible, so it’s like, say if you have chicken pox then everyone would be like “Oh my God, are you alright?”… But if you’re always saying “Oh you know, I’ve got a really sore back”, it’s sort of like you’re always complaining. So, I try not to mention it ever”
Practical tip: Show that you believe and empathise with the experiences of the young person with pain. Do not show scepticism or question their experience of pain or offer “quick fixes”.
Challenge: Moving can be hard when young people are in pain and worry that they may be doing more damage
“It’s really hard because I like exercising, but particularly when I’m in back pain I don’t want to do anything in case it makes it worse, you know ... if I do the wrong stretch, I’m worried that it’s going to set it [pain] off and make it worse.”
Practical tip: Work together with a young person in pain to come up with ways to support them through a rough patch. Pain pushes on mood, interrupts sleep and drains energy. Ask the person with pain about what might work best for them, rather than what you think is best.
Challenge: Social isolation is common when young people are in pain
“I worry about my friends wanting to make plans to go out for a party or something…I don’t know if I’m going to be able to physically get out of bed and feel okay to do that kind of thing. So, it takes a big toll on, like, my social life in that nobody understands it so it’s quite difficult in that aspect.”
Practical tip: Respect a young person’s need for support or rest when a person with pain is going through a rough patch and try to encourage them gently, but do not push them into doing things they don’t feel up to, or ignore their request for support or rest.
Frequently asked questions (FAQs)
This section is designed for those supporting young people with pain.
I am a parent/friend of a young person with pain. Where can I get more help?
This website contains lots of practical information and tips to support young people manage their pain. Check out:
- Making sense of your pain to understand more about chronic pain.
- Approaching pain to understand ways to think about and better control pain.
- Movement with pain to understand how to keep active despite pain.
- Our ‘Further Contacts’ link on this website also provides a list of different healthcare providers that specialise in helping young people with pain. The National Pain Service Directory provides a registry of Australian pain specialists.
I’m worried my friend with pain is sinking into depression, what can I do?
Letting your friend know they are not alone and that you can support them to find help is key.
- The further contacts section on this website provides a link to mental health services where you can find psychological assistance. Headspace and Beyond Blue are also helpful links for mental health.
- The information and tips above can also guide you in helpful communication if someone close to you is depressed.
- Sometimes, having friends and loved ones simply being there for them and sitting with them is all the support they need. Learning to sit with someone can be tricky, particularly when we instinctively want to find ways to help people out of a depressive period. However, letting the person know you are there for them, and empathise with what they are experiencing, can be the best support you can give them.
How important is sleep for young people living with chronic musculoskeletal pain?
Sleep is very important when you have pain. A lack of sleep, or poor-quality sleep, can have a negative effect on our body’s immune and pain control systems.
You can find detailed info on our sleep and pain module.
What about rest with pain?
“But they are in pain – why shouldn’t they rest?” At times, resting due to pain is appropriate and important, particularly for conditions such as Juvenile Idiopathic Arthritis.
- Too much rest can be unhelpful for effectively managing and taking control of pain. When we rest for too long, our muscles and joints can become stiff and make the pain experience worse.
- Resting can also be quite isolating and contribute to feeling low or depressed. To find out more about how to strike a balance between movement and rest, see our getting back to what you want to do and movement with pain
Is movement and exercise dangerous or safe?
Not only is movement important for a person’s overall health, but it is also essential for the management of chronic pain. In most cases, movement with pain is safe and can help turn the pain volume down.
The most important thing is to not stop moving. Movement does not create more damage, although pain can increase at times. Learning to pace up activity is key here – pacing means doing little bits often. To learn more about keeping active with pain, see our movement with pain module.
What about if pain gets worse?
For many people with chronic pain, there will be times when their pain worsens – what’s often called a pain ‘flare’. This is very common and will pass.
- Your support here can be very reassuring for young people. Using the practical tips outlined above will help. You need to know that a pain flare is a tough time but does not necessarily mean the body is more damaged.
- Remember that pain can be influenced by many things including sleep, thoughts, worries, feelings and movement just to mention a few. Every person’s pain experience is unique, and the factors that contribute to a pain flare will be different for each person. Likewise, the practical coping tools that can help buffer a pain flare, or turn the pain volume down, will also be individual.
- A health professional with experience in pain management should be helpful in guiding a plan to manage pain flares.
- To better understand how to get through a pain flare see our approaching pain.
Are medicines safe for young people living with chronic musculoskeletal pain?
All medicines should be discussed with a medical practitioner. Many of the medicines used for adults have not been well tested for young people.
- In general, medications such as paracetamol and ibuprofen are safe for short term use, especially through a pain flare.
- Many other pain medications are higher risk, such as opioids, and should not be prescribed for chronic musculoskeletal pain.
- For some pain conditions such as arthritis, prescribed medication may be an important factor in overall disease management, including pain management.
- To find out more about medications, see our medications and pain module.
What about apps or other digital resources for young people living with chronic musculoskeletal pain?
Apps and websites can be great tools to help young people better manage and understand their pain. These should be from a credible source of health information.
- For mental health, Smiling Mind and Calm are designed to support meditation, sleep, mindfulness, and strategies to reduce anxiety. Smiling Mind offers a free app. Calm requires a subscription fee.
- Dreamy Sleep is a beautiful Australian co-creation with First Nation story tellers, psychologists and artists to support better restful and stress-free sleep. 5 stories are spoken by the story teller who created it with individual images for each story from collaborative artists.
- Pain specific apps include WebMap, which is a free app designed to help teens cope with pain. The app is set up with bite-size modules to assist the understanding of pain and provide practical tools to help manage pain. WebMap also offers helpful tools to track pain levels, sleep and activity, as well as goal setting. iCanCope is a free app tailored to youth and adults living with pain. The app offers short and simple pieces of information about pain, daily check-ins, and goal setting. Each app has differences in its look and feels, its depth of information, and its ability to customise to a person’s specific needs. Young people with pain can try both apps to see which one better fits into their pain management plan.
- For people with endometriosis, Qendo or Endozone may be helpful apps that allow tracking of pain, bleeding, gastrointestinal symptoms, exercise and food.
Want more information?
These are some useful tools for building your toolbox of strategies to reduce feelings of pain and anxiety. Alternatively, if you want to talk to someone, please seek further assistance.
Related management modules
References
- Slater H, Jordan JE, Chua J, Schütze S, Wark JD, Briggs AM. Young people’s experience of persistent musculoskeletal pain, needs, gaps and perceptions about the role of digital technologies to support their co-care: a qualitative study. British Medical Journal Open. 2016 Dec 9;6(12):e014007. doi: 10.1136/bmjopen-2016-014007. [PubMed]
Heffernan M, Wilson C, Keating K, McCarthy K. “Why isn’t is going away?”: A qualitative exploration of worry and pain experiences in adolescents with chronic pain. 2021 Feb 23;22(2):459-469. doi: 10.1093/pm/pnaa245. [PubMed]