Family dynamics can vastly change when chronic pain comes into play. Healthy family connections and coping strategies can be challenging to maintain. This study states that chronic pain, “impinges on almost every aspect of family life, and, over time, is likely to bring about significant consequences for the family”

Feeling helpless

Seeing your loved one in pain, struggling to function and potentially struggling mentally as a result, can be very distressing. It’s not nice to see someone you love going through so much. Often family members can feel helpless because they aren’t able to ‘fix’ the problem. Sometimes loved ones can be unsure how to help, even though they desperately want to.

This feeling of helplessness can lead to frustration and emotional distress within family members. The person in pain may feel extra pressure, trying both to cope with their pain and reassure their loved ones. This study explains that, “uncertainty is often accompanied by feelings of hopelessness and helplessness as they struggle to understand the pain and fear what the future holds for both them and their families”

Invisible symptoms are hard to understand

A lot of symptoms which come with chronic pain are invisible from an outside perspective. This can lead to family members not understanding what the person in pain is going through. They may underestimate the severity of their symptoms and may not understand why they cannot keep up with day-to-day tasks. It’s common to hear that you ‘don’t look sick’.

This can be really frustrating for the person in pain. It can feel isolating to not be understood. It can be frustrating to have to try and explain your symptoms, or to feel your experience is invalidated because others can’t see the illness or injury. This can often lead to tension within family relationships, and a sense of distance. The person in pain may pull away so that they don’t have to explain themselves.

Feeling like a burden

When your level of functioning is reduced and you need help from family members, it’s common to feel like a ‘burden’. This can take a toll emotionally on the person in pain, making them feel less confident and even more helpless against their pain.

Conversely, family members may view their loved one not being able to keep up with activities as frustrating. Despite the familial love, they may see the person in pain as a burden and this can cause a rift in the relationship.

Taking on a caring role

Chronic pain can impede a person’s level of functioning, particularly when it is left untreated. Often family members will take on a caring role. This might involve helping patients to perform daily tasks, helping them keep up with hygiene, taking them shopping and accompanying them to appointments, for example.

This new dynamic of ‘carer’ and ‘patient’ can be difficult to adjust to and can strain relationships. Particularly when it comes to chronic pain and marriage, this role can become an obstacle to romance and sexuality. This study states that, “research findings show high levels of sexual dysfunction amongst the most happily-married couples coping with chronic pain”

This role of caring, if not maintained in a healthy way on both sides, can lead to the person in pain becoming dependant. This means that they are less likely to try and be active or overcome their symptoms. This can contribute to inactivity, which leads to deconditioning; this means that the muscles weaken when they are not used. Therefore, when the person in pain does try to engage in activity, their pain is worsened as explained here.

Increased practical responsibilities

The caring role often entails a big rise in the practical responsibilities around the house for other family members. This can mean that they need to keep up with their own household chores as well as those which the person in pain used to be responsible for. 

They may be responsible for repairs, keeping the house running, doing laundry, shopping for food, cooking the meals and any other household tasks. This can feel like a lot of pressure, particularly if this responsibility all falls to one person. It can take a toll on their mental health with high levels of stress and can also leave them feeling physically exhausted with very little time for themselves.

This study references the effect these additional responsibilities can have on family members: “As a result of these new obligations, which they often find difficult to cope with, relatives may suffer negative effects that produce a physical and psychological deterioration: feelings of sadness, being overburdened, frustration, and impotence.”

Increased financial responsibilities

Many chronically ill people are not able to work due to reduced levels of functioning. This means that one wage in a household is missing. This can lead to financial difficulties for the family and increased pressure on the adults who do work to ‘pick up the slack’ financially.

This study found that, “In households containing a male patient, the total employment full time equivalent (FTE) decreased by 47%” and “In those with a female patient, there was a reduction in FTE of 29%” These are significant decreases which can lead to families ending up in debt and really struggling financially. This adds more stress to the family dynamic.

In many countries, medical care must be paid for either through insurance or out of pocket. These expenses can mount up. Even in the UK where we are lucky enough to have the National Health Service (NHS), often mobility aids and other treatments are only given at a very basic level, so many turn to financing their own mobility aids or private health care to get the help they need.

Loved ones not feeling able to ask for support

When your loved one is in pain, family members may feel that they cannot talk about their own problems because they don’t want to give their loved one ‘any more to deal with’. This can leave them struggling on in silence, feeling that they always need to be strong for the person in pain.

This lack of communication can result in emotional distance between the family members, because the support level is not being reciprocated. It can be frustrating for the person in pain, because they want to be there for their loved ones but are not being given that opportunity

It can even feel patronising to not be told the truth about certain situations because family members do not feel that you are equipped to handle it. This can lead to a feeling of distrust and dishonesty, as well as increasing the person in pain’s sense of isolation and worthlessness because they are not being involved in their loved one’s life.

Withdrawing from social activities

Chronic pain is not only isolating for pain patients. It can also be isolating for family members as explained here. With the extra responsibilities they take on, they may have very little time for going out with friends. They may feel guilty leaving the person in pain at home alone so that they can go out to enjoy themselves even when they do have time. Financial pressures can mean that going out to socialize is off the table as other financial priorities take its place.

The need to be constantly ‘cheerful’

Family members may have an innate sense of always feeling that they need to be cheerful, to keep the person in pain’s spirits up and make things easier for them. It can be tiring to mask your emotions and put on an act.

It can also be patronising and frustrating for the person in pain. We are still people, and we know that nobody can be happy all the time. Going through chronic pain is tough, and we won’t always want to be positive. Sometimes, we might want to be negative and feel a little bit sorry for ourselves, and that’s completely valid. Being constantly ‘cheered up’ can feel immensely pressuring and even dismissive of our feelings.  

Hostility and anger

All these aspects which come into play when a member of the family has chronic pain can make things very tense. Often there will be disagreements and hostility between the person in pain and their relatives. Hostility and anger can come from either side as they struggle to maintain a healthy connection and tempers become frayed. This study explains this communication breakdown: “They (relatives) tend to avoid interactions with the pain sufferer in order to avoid hostile responses.”

Reinforcing fear avoidance and inactivity

Loved ones want to protect the person in pain and even when they feel they are doing the right thing, sometimes they are reinforcing maladaptive (unhelpful) behaviours. Often pain patients avoid activity because they worry that it is going to worsen their pain: this is known as fear avoidance. Avoiding activity can contribute to maintaining and increasing pain levels.

When relatives are worried about activities causing pain, it often compounds these fears within the person in pain. This means that they can avoid activity even more, losing more confidence and being more reliant on their loved ones. Their level of functioning can become increasingly reduced.

This study looks at the effect of this reinforcement of fear on pain patient’s returning to work and found that “relatives sometimes shared and even reinforced certain feelings, such as a fear of pain or the development of a new work-related injury, and they may be pessimistic about the possibility of the patient going back to work.”

How family dynamics can be incorporated in a medical setting

The more medical professionals realise the impact chronic pain can have on the family as well as the patient themselves, the more they can take this into consideration when it comes to treatment. If the patient feels comfortable with it, the family should be involved in treatment because it affects them too. This study focused on treating the whole family rather than just the individual with chronic pain and found that with this approach, “75% of the patients and families were able to lead normally active and satisfactory lives again.”

Relatives should be given appropriate pain education so that they can understand what their loved one is going through and the science behind chronic pain. Practical advice should be given on how relatives can help patients with adaptive (helpful) behaviours. 

This study concluded that, “Nurses can help reduce the negative impact of pain by including families in assessment, education, referral and treatment processes, and by offering support and education to partners/families.”

When equipped with this type of education, family members will be in a better position to encourage and really help their loved one. They will go home feeling empowered and confident rather than frustrated and hopeless. 

When patients have the right type of support from family members, they can be so much more independent and take control of their chronic illness. This study concluded that patients who have this support, “reported significantly less pain intensity, less reliance on medication and greater activity levels.”

Guidance for coping as a family

References