If you’ve never experienced chronic pain, it can be hard to understand how it differs from acute pain. It can be challenging for the family of pain patients to get their heads around invisible symptoms.
Chronic pain can be hard to understand yourself, so how do you get your family to understand what you’re going through? Don’t worry – we’ll cover everything you need to know.
Why It’s Important Family Understand
I know it can be difficult to talk to your family about your chronic pain, it’s something I struggle with a lot. Despite those difficulties, it’s crucial that you communicate about your condition with your loved ones. There are lots of reasons it’s important that you have family support.
Stress and pain are related, with one worsening the other. When your family understands what you’re going through and is there to support you, stress levels are reduced which can in turn reduce pain levels and improve your quality of life.
This 2023 study on women with fibromyalgia found that the more positive relationships with partners and family members are, the: “lower the perceived loneliness, people feel happier, more satisfied with their lives and the lower the impact that fibromyalgia has on their lives.”
Open communication is the best way to keep relationships strong. When family members are supportive, it can help the pain patient feel encouraged and more positive about their life.
Validation is Vital
For many of us, the majority of our symptoms are invisible. This can often lead to people not believing us when we describe what we’re experiencing. Being dismissed or invalidated can be incredibly disheartening and worsen our mental health.
This can hurt even more when it’s from the people closest to you. This 2022 article states that: “Chronic pain patients may experience additional, and unique, harms by being misunderstood or invalidated by those in their close social circle.”
Validation is not only key for mental health, but it also impacts pain symptoms. The article goes on to explain: “Invalidation of pain experiences has been shown to negatively impact not only pain outcomes and psychological distress, but also individuals’ ability to cope.”
Improved Treatment Outcomes
Plenty of research shows that when chronic pain patients have the understanding and support of their family, they cope better; are more likely to stick to treatments, and are less likely to catastrophize about their pain.
The mind and body are connected, and if you are in a family environment which worsens your mental health, it can also make your chronic pain symptoms worse. This 2019 study from the International Journal of Behavioral Medicine states that: “A negative family environment may be related to the development of depression, which may be associated with the severity and inability to cope with chronic pain.”
A book on the topic by doctor Julie K Silver explains that: “family perceptions can greatly influence the medical treatment someone receives.” When families understand the science of chronic pain and how treatments work, they can help the pain patient seek appropriate treatment.
Helps Loved Ones Cope
Chronic pain doesn’t just impact us – it’s also tough for loved ones to cope with. It’s hard to see someone you care about in pain and struggling.
Research shows that families of chronic pain patients often feel: “feel powerless, alienated, emotionally distressed and isolated.” They may feel worried about you which can impact their mental health.
Helping those around you to understand what you’re going through can enable them to feel empowered. It can also help them to open up to you, so you can be there for each other.
11 Ways to Help Your Family Understand Your Chronic Pain
1. Educate Yourself First
If your chronic pain is new to you, you might not fully understand yourself yet. Take your time to do some research and learn as much as you can. Not only does this help you to understand what’s going on with your own body, but it also prepares you for talking to your family about it.
2. Communicate Openly
Be open and honest about what you’re going through. Let your family communicate with you too – they will likely have questions and concerns.
Be aware that it might be hard for them to get their head around, so don’t be too disappointed if they don’t understand at first. It will be an ongoing journey for them just as it is for you.
It can be helpful to think about subjects you want to discuss with your loved ones. You might want to cover:
- What chronic pain is: Depending on how much your family knows, it can be useful to start with a clear definition of what chronic pain is.
- Your symptoms: Describe the symptoms you experience in a way that’s easy to understand.
- The basic science: Explaining the basics of the science behind chronic pain can help to give loved ones a more in-depth understanding of what’s going on inside your body.
- Good and bad days: You may want to explain that your symptoms are changeable and some days may be better than others. It’s important they understand that if you’re having a good day, it doesn’t mean your condition has vanished or that you won’t have bad days again.
- Mental health: People often underestimate the emotional toll of living with chronic pain. Explaining how it affects your mental health is an important part of the puzzle.
- The help you may need: It’s a good idea to chat about the help you might need moving forward, whether that’s from them or professionally.
- Unpredictability: Often the most difficult thing for others to understand is how unpredictable chronic pain can be. Sometimes loved ones can get frustrated when we have to cancel or change plans. Talking about the unpredictability of your illness can help them to be more understanding.
- What is and isn’t helpful: Loved ones often want to help but sometimes their help can be misguided. It can be useful for both you and them to make it clear what you do and don’t find helpful.
- Treatments: Treatments may be trial and error and unlike acute pain, chronic pain treatments aren’t a simple ‘cure’. It can be helpful to talk to your family about potential treatments and what their expectations from them should be.
3. Provide Resources
If you don’t feel able to explain your illness to your family yourself, consider giving them some resources to learn from themselves. Providing resources is also really useful in addition to your explanation to help them get a better understanding.
Depending on your diagnosis, you might be able to find videos, articles, and blog posts online. You may be able to find books and leaflets on the topic too.
4. Write It Down
If you struggle to communicate verbally, it might be helpful to write it down. You could make notes of points you want to cover to keep you on track during conversations with family if you tend to get flustered. Alternatively, you could write everything you want them to know for them to read in their own time.
5. Use Analogies and Metaphors
Using relatable comparisons can help people understand the experience of chronic pain by likening it to something they can relate to. This 2020 review states that: “Performing pain education by using metaphors has shown to be helpful in increasing pain knowledge in an adult population.”
For example, some people find it helpful to think of central sensitization as similar to a faulty car alarm that goes off even though there isn’t any danger. Others find it useful to think of chronic pain conditions in terms of the brain and nervous system being a computer – the issue is with the software and how it runs, rather than with the hardware.
To describe how a symptom feels specifically, I find it best to compare it to something that the other person has personally experienced. Making it relatable for the individual can help with understanding.
6. Get Them Involved
Having family members come along to appointments and be involved in your treatment can be helpful for you and them. Medical appointments can be stressful and nerve-wracking. Having moral support there can be reassuring and help you advocate for the treatment you deserve. It can also give your family a deeper understanding of what you’re going through.
If you have a doctor or specialist you trust, it may be worth asking them if you can make an appointment for you and your family members specifically to give them more information on your condition. This can also give them a chance to ask a medical professional questions they may have.
A study on family involvement in chronic pain management programmes found that pain patients felt: “ the involvement of significant others to be important because managing pain necessitates ‘being on the same page’ and significant others also needed an opportunity to access support and information.”
7. Don’t Sugarcoat Symptoms
Some days you may look as though nothing is wrong! This makes it even more important to be honest about your symptoms with those around you. Don’t sugarcoat it! It might be upsetting for those who love you, but being raw and honest is the best way to help others understand.
8. Challenge Stigma or Misunderstandings
If a family member says something stigmatising about your chronic pain or misunderstands your symptoms, it’s important to challenge it. For example, if they make an insensitive joke or if they say something flippant like “Oh yes I hurt my leg once so I know how you feel” or “We all get tired sometimes”.
I know from personal experience this can be hard to do, especially if they mean well. However, if those perceptions are left unchallenged the other person doesn’t learn they were wrong, and you are left feeling frustrated and hurt. It’s far better to explain why their assumptions are incorrect and educate them further if you feel able.
9. Set Clear Boundaries
Family members often want to help but sometimes their fears, worries, or eagerness to ‘push’ you can be unhelpful or even harmful. Don’t be afraid to set clear boundaries about what help or advice you want. Of course, relatives must be able to have their boundaries respected too.
Something I find really useful with family members is letting them know that if I need help, I will ask for it clearly and specifically (and I would prefer they didn’t offer advice or help out with that). I also try to speak up if they say something that makes me more nervous about my symptoms. It’s all about being honest with yourself and them.
If you have tried to help loved ones understand over time and they are committed to misunderstanding or invalidating your pain, remember that you can set clear boundaries with them. You may want to distance yourself from them if possible or make it clear you no longer want them to talk about your condition.
10. Try a Personalised Symptom Scale
Many people find it helpful to use a pain scale to ‘measure’ their pain levels. This can help loved ones to understand how bad your pain is on any given day.
I have found that pain scales don’t represent my symptoms properly, so instead, I created my own symptom scales. This allows me to ‘rate’ my symptoms and let my support system know how bad (or good) things are without having to try and describe them every day. I highly recommend doing this if you find it draining to talk through your symptoms regularly.
11. Family Therapy
If you’re struggling to communicate with your loved ones, attending therapy together is a fantastic idea. A therapist can help you all with healthy communication and give you tools to cope with your chronic pain as a family.
Can Family Members Understand Chronic Pain?
Family members who have never experienced chronic pain will never know what it feels like, but they can get a good understanding of what you’re going through. It takes time, open communication, and patience on both sides to help your loved ones understand your chronic pain.
- Ana Raquel Ortega-Martínez, María Luisa Grande-Gascón, & María José Calero-García (2023), “Influence of socio-affective factors on quality of life in women diagnosed with fibromyalgia”. Front. Psychol., 08 November 2023, Sec. Health Psychology.
- Jieun Lee, Brian M Green, Amy Wachholtz, et al, (2022), “Negative impact of chronic pain: The role of locus of control and perceived family validation of chronic pain”. Health Psychology Open. 2022;9(2).
- Akbari F, Dehghani M, Khatibi A, Vervoort T., (2016), “ Incorporating Family Function into Chronic Pain Disability: The Role of Catastrophizing” Pain Res Manag. 2016;2016:6838596.
- Boone, D., Kim, S.Y., (2019), “ Family Strain, Depression, and Somatic Amplification in Adults with Chronic Pain.” Int.J. Behav. Med. 26, 427–436.
- Julie. K. Sliver, M.D., (2004), “Chronic Pain and the Family”. Harvard University Press.
- Caryn West, Kim Usher, Kim Foster, Lee Stewart, (2012), “Chronic pain and the family: the experience of the partners of people living with chronic pain”. Journal of Clinical Nursing, Volume 21, Issue 23-24, December 2012, Pages 3352-3360.
- Koechlin, H.; Locher, C.; Prchal, A, (2020), “Talking to Children and Families about Chronic Pain: The Importance of Pain Education—An Introduction for Pediatricians and Other Health Care Providers.” Children 2020, 7, 179.
- Swift CM, Reed K, Hocking C., (2014), “A new perspective on family involvement in chronic pain management programmes.” Musculoskeletal Care. 2014 Mar;12(1):47-55.