Living with Chronic Pain

Living with Chronic or Persistent Pain

Chronic pain can have a huge impact on many aspects of life and be downright miserable. If you are a sufferer yourself you will be all too aware of this. It may affect your sense of identity, your relationships, and your mental health.

The emotional aspects of chronic pain are often poorly understood by those not experiencing it. Meaning many sufferers end up feeling frustrated and lonely.

This article looks at the various mental health impacts, coping strategies, and possible sources of help for living with chronic pain.

What is chronic or persistent pain?

These are terms used to describe pain that is experienced for 12 weeks or more. This pain may be constant, vary in intensity, or come and go.

What is acute pain?

Acute pain is the result of inflammation, illness, injury, or tissue damage. Such pain, whilst unpleasant may be helpful. For example, if we break a bone we don’t want to be applying pressure to it. Once the injury or illness has resolved the pain then goes away.

Chronic pain persists beyond recovery or is an ongoing issue with no known cause.

What causes chronic pain?

Persistent pain can be a complex condition that may be caused by a number of factors. Sometimes there is a known reason for what is causing it, like damage to nerves following surgery, joints affected by arthritis, cancer, etc. However, there are many people struggling with persistent pain where medical professionals are unable to pinpoint the physical cause. It’s not to say the pain isn’t real in these cases, it certainly is, there are still many aspects of pain science does not fully understand.

Sometimes chronic pain started out as acute pain following an injury, surgery, or illness. In these situations, the person’s physical condition heals or clears up but the pain persists. It is thought that there may be some malfunction with the nerves continuing to send signals to the brain or the brain misinterpreting the signals coming from those nerves.

Chronic pain may sometimes be the result of sleep deprivation, stress, anxiety, or depression. Such issues have been linked with increased sensitivity to pain and possible inflammation.

How chronic pain impacts daily life

Persistent pain can impact people in different ways. It is an individual experience that can vary according to the severity of the pain, any other health issues, support network, previous or current mental health difficulties, and so on.

Below I have listed some of the common issues faced by people suffering from chronic pain. It isn’t an exhaustive list and you may experience some of these, none of these, or other challenges.

Poor sleep

Not being able to get comfortable, medication, worries, or reduced physical activity have the potential to impact sleep quality and duration. Tiredness has been linked with reduced resilience, reduced well-being, and increased sensitivity to pain. This can then become a vicious cycle.

If you are experiencing any of the above you might want to consider:

• What do you need to get comfortable in order to sleep? This may include things like a body pillow, a supportive mattress, or a recliner chair;

• Practice sleep hygiene. For example, keeping a regular bedtime routine, getting up at the same time each day, limiting caffeine, and so on;

• Distraction techniques such as breathing exercises, body scans, visualisations, and audio bedtime stories;

• Discussing sleep issues with your GP.

The loss of independence

Severe pain may limit movement or be made worse by certain activities. Chronic pain may make personal care and practical tasks difficult or impossible to do. It may mean relying more on others to help or carry out these tasks for you. You may need help getting out of bed, getting dressed, traveling places, cooking, or doing the housework.

These are tasks you may have done without much thought in the past. To go from being able to manage day-to-day tasks to needing help can be difficult to adjust to. Needing help may result in feelings of shame, inadequacy, frustration, or guilt.

Here are some suggestions for helping you to cope:

• Be kind to yourself - Try not to beat yourself up for not being able to do the things you used to manage. You cannot help being in pain and it’s definitely not something you would choose to be experiencing. Notice if you are having negative thoughts and then offer yourself some compassion. In the same way you would to a friend or a loved one.

• Accept help - If someone offers help learn to accept this. If anything, you may be doing them a favour by taking them up on the offer. Sometimes friends or family members feel helpless and giving them direction may be a relief as they feel they are able to do something to support you. So you could both be benefiting by accepting assistance.

• Ask for help - It may feel awkward or uncomfortable to ask for help. It often gets easier with practice. As mentioned in the point above, some people will be glad to be asked as they feel they are able to do something to help.

• Turn down help you don’t want - You may find some people want to help ‘too’ much. Trying to take over tasks you can manage and want to do. It is likely coming from a place of caring but you may find it stifling. Be clear about what help you need and what help you don’t require. For example ‘I really appreciate you wanting to help with x, but I can manage that okay. What would be really useful is if you could do x instead. Is that something you can do?’

• Recognise your strengths - Losing the independence you had is likely to be a huge change to your life in many ways. You may have felt useful by working or doing household tasks. If you are no longer able to do the things that gave you a sense of purpose it may lead to low self-worth. Take time to reflect on your strengths. This could be things like being a good listener, being able to give good practical advice, or having in-depth knowledge on certain topics.

Loss of independence may impact your social life. I have added some suggestions below for helping maintain or develop a new social life.

Social Isolation

Persistant pain may impact your social life leading to isolation and loneliness. You may find:

• It may be harder to travel to meet people or to sit for a period of time in a chair that may not be supportive enough;

• You may not be able to take part in the group activities you used to enjoy;

• You may worry about needing to cancel plans last minute if you have a flare-up and worry about letting people down;

• It may be harder to be sociable when pain is at the forefront of your attention. It may feel difficult to concentrate on what another person is saying or offer empathy;

• If you work, you may need to take time off or end up leaving.

Join a support group - Joining a support group gives you an opportunity to meet and talk to others who are experiencing similar issues and challenges. It is a chance to feel part of a community of people who just ‘get it’. A group where you can contribute experiences and ideas whilst also learning from what others have to offer. Such a group may help you to rebuild your confidence and sense of well-being.

Learn a new skill - Is there something new you would like to learn? Some local colleges run classroom or online short courses. These can be a good way to try something out as well as a way of meeting like-minded people. Or, maybe there is an online or in-person workshop or group where people meet for something like meditation (which may be helpful for managing pain as well as the social side of doing a group activity)

Communicate - Stay in contact with others. Let them know you may need to cancel plans at the last minute, may not be able to stay as long as planned, or need them to come to you. If you are distracted by pain, let the other person know. It’s easy for people to read distraction as disinterest. If people know what is going on for you they are more likely to understand and be able to support you better.

Difficulties or a change in romantic relationships

Chronic pain has the potential to bring a lot of change in a romantic relationship:

• Pain may make sex difficult, unappealing, or impossible. Some medications may lower libido. Or, you may want sex but your spouse/partner is afraid of hurting you.

• The dynamic of your relationship may alter. For example, you may have gone from the carer to the cared-for, or the main income earner to working less or not at all.

• You may have had shared interests that you are no longer able to enjoy together.

• Your mood may be different. You may become more irritated, or angry.

• Your spouse/partner's mood may be different too. They may also be tired and feel helpless.

• There may be financial worries as a result of medication costs, reduced household income, and specialist equipment needed.

Communication Tips

Chronic pain has the potential to bring change in a romantic relationship. Having open, clear, and non-defensive communication is essential in navigating how you can try to move forward as a couple. Some communication tips include:

• Ask for help when needed. It’s a common issue to fall into the trap of assuming the other person knows what you need without actually asking.

• Talk about any difficulties with sex. I have included more about this further down.

• Share your appreciation for each other. This can include something they have done or said, or what you love about them.

• Voice frustrations. By not sharing frustrations carries a risk of them flooding out in anger or seeping out as passive aggression. Anger and frustration are natural human emotions. However, when expressed in unhelpful ways it doesn’t resolve anything and could lead to conflict.

• Tips to share frustrations:

  • Choose your moment. If the other person is busy and stressed they will be less likely to hear you and more likely to respond defensively.

  • Ask the person for their full attention or arrange a time when they can give it to you.

  • Speak from the ‘I’. For example ‘Whenever, I ask you to do the dishes I get the impression you are not happy about that. Is this the case?’ as opposed to ‘I am sick and tired of having to ask you to do the dishes and you pulling a face about it’ You can see how the second one is more likely to lead to an argument rather than understanding.

  • Listen to the other person’s response. Try and see it from their point of view. You don’t have to agree. It is about understanding where each of you is coming from.

• Regular structured talk time - Schedule a regular time to have an open conversation about your relationship and any difficulties or needs not being met:

  • Agree between yourselves on how often and when you would like to do this;

  • Set a length of time for the talk to last for example 30 or 60 minutes. Don’t go beyond this limit. If you do there is a risk of the conversation becoming stuck, tiring, or losing focus.

  • Set some ground rules in the first talk time. These may include:

    • How you will share the time for speaking and listening to make sure you both have an equal opportunity to speak and listen?

    • What to do if it gets heated e.g. take a five-minute time out or breathe together.

  • Set an intention to try and see the other’s point of view. You don’t have to agree but it is about understanding where each of you is coming from.

  • Both of you share things such as how you feel and what you need.

  • Be open to compromise.

  • Find a positive way to close down the talk time. For example, sharing a hug regardless of how the talk went. Sharing three things you’ve appreciated about that person since your last structured talk. It may include something they have done, a kind word, or time you enjoyed together.

• See a relationship counsellor - A relationship therapist offers a safe and supportive space for you and your partner to discuss your relationship. The therapist may be able to offer objective insights and suggestions on how you can communicate more effectively and cope with conflict and disagreements.

Spend time together

It is easy to get caught up in the busyness of life. Especially if your partner or spouse is working and needs to do house chores too. However, it is important you both find time for each other. That may mean getting additional help with practical tasks or putting off non-essential jobs.

Pain may limit what you can do, so you may need to find different ways to enjoy time together. This may involve going out somewhere but staying local or for a shorter duration. Have a regular date night, where you eat together, watch a movie, play games or solve the crossword puzzle.

Sex and chronic pain

• Communication. When it comes to sex communication is vital. Many people find sex a difficult subject to talk about. If people are not talking about it they cannot meet the needs of the other or find compromises. Talking also clears up any misunderstandings. If one person wants sex and the other doesn’t they may feel they are being rejected. Talking means being able to fully understand what is going on and offer or receive reassurance.

• Sex may require more planning. Finding times of the day you feel more mobile, in less pain, and more alert.

• Experiment with different positions that may make sex more comfortable.

• Don't feel pressured into doing things that feel painful, that may cause you to suffer afterwards, or that you just don’t want to do. Discuss options that may include, not having sex at all or other things you can both do and enjoy that are not ‘full sex’. For example, mutual masturbation, sex toys, or naked cuddles and caresses.

• If you are not having sexual contact maintain physical intimacy in other ways. This could involve cuddling up together, hugging, or holding hands.

• If sex does become an issue you may want to book an appointment with a psychosexual therapist.

Losing your sense of identity

Your life may look and feel very different when living with chronic pain from how it was before this. We form our sense of self around the things we do and the roles we take.

Before experiencing a chronic illness, your life may have evolved around work, caring for family, or being active. Yet the debilitating nature of pain can limit how much you’re able to do.  It may also affect your relationships with your family, friends, and colleagues and leave you feeling lonely and isolated.

Such major changes may leave you feeling lost and wondering who you are now. You may form a new identity around the pain and the limitations it brings. Understandably, pain can become consuming. It may limit your energy, focus, motivation, and self-esteem. It is easy to get stuck in a rut and feel overwhelmed and not be able to see a way forward.

We form our identity in several ways:

1. Our values e.g. honesty, kindness, and fairness

2. Our relationships e.g friendships, family, neighbours, and peers

3. Our interests e.g. sports, creativity, or travelling.

4. Our strengths e.g. confidence, good at listening, or knowledge on certain topics.

5. The roles we play e.g. parent, colleague, and friend.

To find a way to form a new identity go through each of the above:

• Values:

  • Find a list of values and circle the ones that are the most important to you.

  • Write down what each one means to you. For example, if you picked ‘courage’ what do you mean by this? I see it as doing something that feels right (for yourself or others) despite there being a fear of negative judgment or other consequences.

  • How have you lived by these values in the past?

  • How can you continue to live by these values when living with chronic pain?

• Relationships - See the section on ‘social isolation’ for ideas;

• Interests:

  • Write down what interests you had in the distant past or until you suffered from chronic pain;

  • Which, if any, of these can you still do?

  • For those you struggle to do now, is there a way of modifying this activity? For example, joining online groups rather than in-person, getting specialist equipment, or only doing the activity for a short amount of time.

  • If you are unable to adapt to previous activities, were there any interests you had in the past you could do now? Or new ones you could try?

• Strengths. Consider what your strengths were in the past and if they still apply now. You might find some do and some don’t. If you feel in pain it may be difficult to recognise these. If so, consider how a friend would describe you. Do you have skills such as being a good listener, creative, or good at problem-solving?

• Roles:

  • Write down the roles you played before the pain e.g. carer, homemaker, worker, partner, friend, etc.

  • Write down how you undertook these roles. For example, cooked the evening meals.

  • Is there a way you can still play those roles but in a different capacity? For example, homemaker to home organiser (listing jobs that need doing, asking for help to get these done).

Loss of purpose

Before experiencing chronic pain, you may have found a sense of purpose through the roles and activities you took part in. For example, caring for others, working, or being active. When limited by pain you may have to reduce or stop doing these things. This may leave you feeling aimless and lost.

You may find some of the suggestions in the above section (Losing your sense of identity) useful for building a new sense of purpose.

Mental Health Difficulties

There is no surprise that pain often impacts mood. It is miserable being in pain, and even more so when it becomes chronic. That in itself would be enough to potentially impact your mental health. Then on top of this persistent pain are the changes it can bring to your day-to-day life. From social activities and being independent to your sense of identity and purpose. That is a lot to be dealing with!

Chronic pain may bring about feelings of:

• Grief;

• Anger and frustration;

• Anxiety and depression;

• Loneliness;

• Shame & embarrassment;

• Emotional numbness and boredom.

This article contains various suggestions that I hope will be helpful for coping with the emotional impact of chronic pain. However, if you are struggling with your mental health you may find it useful to discuss this with your GP or a Counsellor.

Sources of help

Pain Specialist

The NHS has specialist pain clinics for people struggling to manage their pain. If you feel you have exhausted the medical route but have not yet seen a pain specialist, it might be worth speaking to your GP to request a referral.

In addition to medical help, there are other options that might support you in managing your condition.

Eye Movement Desensitisation Reprogramming (EMDR)

Research shows EMDR may be able to help people with persistent pain:

1. If the chronic pain was a result of a traumatic event, EMDR can help to process the traumatic memory;

2. EMDR may reduce or eliminate chronic pain from which there is no known organic cause. For example, EMDR would not reduce pain from nerve damage but if there was no known medical cause for the pain then EMDR could potentially help. It is thought that some types of pain may be held in the nervous system as a memory. When the pain memory has been processed the intensity of the pain may be reduced or disappear.

Counselling

Talking about your experience may allow you to make sense of what you are going through and the changes that pain has brought to your life.  Counselling can help you to explore how pain impacts your life and find ways of coping with this change. This is the type of therapy I provide.

As mentioned earlier, if you want help with sex (either individually or as a couple) a specially trained psychosexual therapist may be helpful.

If you are wanting therapy as a couple to discuss your relationship, communicate effectively and find ways of dealing with conflict, a couples therapist would be more appropriate.

Mindfulness

Research suggests that Mindfulness may help to reduce pain. It is thought that observing the pain rather than fighting against it, can bring some physical and psychological relief.

There are plenty of resources available for learning mindfulness. Online courses, books, private tutors, and phone apps.

Complementary therapies

Alternative therapies may help you to feel supported or to manage your pain better. There are many different therapies available, some of which include acupuncture, Reiki, or Aromatherapy. These types of therapies are meant to complement, not replace, conventional medical treatment.

Physio Therapy

A physiotherapist may be able to advise you on exercises that are safe for you to do. Exercise has been linked with better sleep and improved mood.

Other resources

Below is a list of websites that contain useful information and advice with regard to pain:

The pain toolkit -  This website has various resources, such as leaflets and videos.

Action on pain - Offers help and advice.  

Pain UK - Contains information and FAQ’s for specific conditions

NHS Living Well - Explains how to get help from the NHS.

Counselling for Chronic Pain

Online may be a good option if you would struggle to attend an in-person session. You may also feel more comfortable in your own chair, than in a therapist’s office.

If you have any questions or would like to book an appointment (face-to-face, online or by phone) please contact me