The Chronic Pain Couple E-Book

Karra Eloff

• Herausgeber: Exisle Publishing
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 214

Veröffentlichungsjahr: 2022

Beschreibung

Maintaining joy and a fulfilling relationship while coping with chronic pain is a struggle faced by millions of people today. Australian health entrepreneur Karra Eloff has drawn on academic research and her own experience to develop this remarkable relationship, delivering practical solutions to couples living with chronic pain.|Maintaining joy and a fulfilling relationship while coping with chronic pain is a struggle faced by millions of people today. Australian health entrepreneur Karra Eloff has drawn on academic research and her own experience to develop this remarkable relationship, delivering practical solutions to couples living with chronic pain.

Leseprobe

The

ChronicPainCouple

Karra Eloff is a health professional, speaker and entrepreneur dedicated to helping suffering people find joy. She is the managing director of two private psychology clinics on the east coast of Australia, and is also the founder of The Chronic Pain Couple, an organization that delivers practical support to people with chronic pain and their loved ones. Karra is a wife, mother and former speech pathologist who featured as a regular guest panellist on the TV talk show Be That.

To my husband Johann,

Thank you for believing with me thatremarkable was still possible.

CONTENTS

Introduction

PART 1: THE PAIN

1. A remarkable relationship

2. On pain

3. My story

4. Communication hack #1: Communicating need

5. Communication hack #2: Communicating love

6. Communication hack #3: Fighting fast

PART 2: THE HIDDEN PAIN

7. Kissing cousins: Pain and mental health

8. Trauma and chronic pain

9. The power of negative thoughts

10. Uncovering your core beliefs

PART 3: MENTAL MEDICINE

11. Self-compassion

12. A different perspective

13. The other side

14. Supporting your partner

PART 4: ON SEX

15. Sex matters

16. The problem of desire

17. When sex is painful

18. Making changes together

PART 5: THE NEW NORMAL

19. The journey towards a new normal

20. Pivot and reach

Your beginning

Acknowledgments

Endnotes

Index

INTRODUCTION

‘I don’t know who this person is,’ the man said through tears, glancing sideways at his wife, who sat next to him with her arms tightly wound around her. ‘She’s no longer her bubbly self, she has no energy to spend time with me, and we hardly talk because she’s always in pain. When we do talk, it’s always about her health.’

His wife blinked but showed no other reaction.

The woman opposite him then spoke softly. ‘I can’t do our usual outings with my husband any more. A simple thing like going to a restaurant has become difficult.’

Another man chimed in. ‘I’ve quit my job to take care of my wife. She’s emotional all the time.’ He paused before adding, ‘Our relationship was over the moment she became sick.’

These are some of the comments I heard the first evening of a pain support group for couples I co-facilitated. Everyone appeared grief-stricken and exhausted. No couple was sitting close to one another or being affectionate. Not one hand was held.

The struggle to maintain a passionate and fulfilling relationship while coping with chronic illness and pain is a serious problem for millions of couples today. On average, one in five adults suffers from chronic pain. For those older and hopefully wiser individuals, the number rises to three in five.1

Chronic pain is defined as any persistent or intermittent pain that lasts more than three months. No doubt you already know this, though. Like me, maybe you found yourself going online in a desperate search for someone — anyone — to tell you how to keep pain from stealing your joyful marriage. Except for a few articles advising how to ‘survive pain and sustain a relationship’ there’s not much out there that speaks to this problem. Besides, I don’t think anyone wants to just survive. I also don’t believe any couple wants a relationship that’s just sustained either. Do you? No, I didn’t think so, which is the reason for the book you’re holding in your hand.

I know what chronic pain and illness can do to a relationship. My life was once focused on the daily burden of managing persistent pain while I watched, in alarm, as the romantic connection with my husband slipped away. Often, we planned dates as if I was well, ignoring the fact that I could barely make it out the door, let alone be good company. Across from each other in a beautifully dim-lit restaurant, our main topic of discussion was how long I could tolerate sitting before the pain became too uncomfortable and we needed to leave. So much for enjoying a romantic evening!

Thankfully, this struggle was short-lived. Not because my pain decreased or went away, but because we made a decision together not to allow the illness and pain that had entered my body to sidetrack our relationship. I dug deep into the available research and by applying practical strategies from my findings, as well as some select clinical strategies we have taught hundreds of our clients and continue to use ourselves on a daily basis, I identified the key steps that returned joy to our love life despite chronic pain.

I should explain that I’m a speech pathologist, now managing director of two private psychology clinics, and my husband Johann is a clinical psychologist. Every week, our team of psychologists welcomes hundreds of people into our clinics who are facing serious, life-altering crises, including chronic pain issues and relationship distress. Not surprisingly, many chronic pain couples find themselves on the verge of divorce and unable to find the practical support they desperately need. Like you, their focus on daily survival has rendered their ability to have a flourishing, fulfilling and passionate relationship out of reach. Or so they believe.

Over time, brave couples can learn to break the stronghold that chronic pain has had on their relationship — and once again feel the glow of intimacy, both emotional and physical, in spite of their daily battle with pain. Such a transformation requires a multidimensional approach, changing specific aspects of your mindset, lifestyle and ways of relating.

Now, if you happen to be reading this from under a mountain of duvets or heat packs, you might doubt you have the energy to tackle all that change. I understand if your response is something like, ‘Look, having a great relationship sounds good, but I’m so exhausted I can hardly deal with the demands of my daily routine, much less handle a bunch of new complicated strategies.’

But I’ll let you in on a little secret.

When couples turn towards each other and refuse to let their circumstances of chronic illness and pain control their love and their lives, the relationship experiences a powerful strengthening. That’s when the journey to a new normal begins. Even when you’re fatigued (read: need more rest than an entire retirement village), it is within your power to have a great relationship — in fact, a remarkable one. The key is making small practical changes that require little energy but make a big impact.

You don’t have to settle for a passionless relationship or a dull, survival-based coexistence with your partner. You’re worthy of love, and no matter your condition and level of pain, you’re capable of a fulfilling and passionate relationship.

Five steps: The path to joy

In the development of effective strategies, I lay out five areas that pave a new path to joy for couples up against the daily struggle with chronic pain. This roadmap to a remarkable new normal will lead you and your partner to a new, deeply satisfying life.

1. The importance of being on the same team as your partner.

2. Practical tips for communicating about your condition, to make space for more romance and fun in your relationship.

3. How to develop self-compassion and master your emotional wellbeing so that you can become a more joyful partner.

4. How your pain and brain relate to each other and how it affects your relationship.

5. How to enhance your sex life despite pain.

Note that this book has been written as if I am talking to the person who is experiencing pain, so if you’re a health professional or a partner supporting a loved one in pain (how wonderful you’re investing in your relationship in this way), please know that this book is as much for you as it is for your partner. Please don’t be distracted by my direct address of the reader.

Besides practical strategies, you’ll also find information about the current research on pain, relationships and mental health, which may give you a new perspective on your experience. Keep in mind, however, that it isn’t intended to be a substitute for professional medical advice from your GP and healthcare team.

Take it slow and easy

Finally, for those of you who suffer from chronic pain and seek to re-establish a loving connection with your partner, be gentle with yourself while you work through the chapters. Allow time to slowly digest the information, perhaps a couple of pages at a time. Expect your concentration to be short and your energy low, and know that not every strategy in this book will relate to your situation. Still, I invite you to be open to change in all areas of your life, not just in your relationship. The more you understand and love yourself, the easier it will be for your partner to understand and love you, too.

PART 1

THE PAIN

All things remarkable are surprisingly simple; albeit difficult to find.

—Criss Jami

1

A REMARKABLE RELATIONSHIP

While out shopping one morning, I was stopped abruptly by a hand pulling at my arm and spinning me around to face a friend I hadn’t seen in a month. Although usually bright and bubbly with a smile, she was visibly worn out and appeared grief-stricken.

‘Karra, Rob’s back operation didn’t go as planned. He’s still in a lot of pain, and it’s been four months.’ She leaned in closer as if she were sharing a secret. ‘I don’t know how much longer I can be strong for him. I love him, but I’m so tired. I need to do everything around the house, and he’s not the same man he was before the back injury. It’s so hard. You know what I mean, right? Isn’t this the kind of problem you help couples solve?’

She let go of my arm, but her sense of desperation still gripped me.

The big question

Is it really possible to break the stronghold pain has on your relationship? That’s the big question she was actually asking, and I often hear similar questions from couples, some of whom are teetering on the edge of giving up.

I can relate. Before pain entered my body, Johann and I used to enjoy exercising together each evening, followed by unwinding on the couch as we shared the triumphs and challenges of our day. As the months and years went by without my health issues resolving, my battle with pain became the usurper in our relationship. We’d sit at night side by side, silenced by exhaustion. The fatigue was at a level I’d never known before, and my husband was drained from caring for me more than he cared for himself. We had nothing left to give each other, only a vague hope that I might get better so that we could get back to ‘normal’.

By the time couples realize they need help finding a new normal, many are so overwhelmed and drained by the daily battle of pain that they (understandably) doubt their ability to restore their lost intimacy and spark. With what energy? And where to start? By all accounts, pain has robbed them of their ability to support and comfort each other.

Research confirms that chronic illness and pain are a huge challenge for couples to navigate.1 A partner experiencing chronic pain can be a cause of decline in relationship satisfaction, an increase in home-life stressors, and can put both partners at risk of developing mental health problems.

So, I want to ask you an important question: How has pain impacted your relationship?

In my own research, I’ve encountered two primary types of chronic pain couples. The first couple I come across has lost the spark in their relationship, making it harder to connect as in the past. However, they are a well-connected couple, which means they’ve still managed to stay close to each other. What they’re looking for is a fast track to a ‘new normal’ so that they can live joyfully together, as if the pain isn’t there.

The second type of couple is the one for whom the pain has really changed the partner and/or relationship. This couple is completely depleted, not able to draw closer to each other, and left wondering how or if they can stay together. The partner not in pain often pushes their ‘needy’ partner away, and the partner in pain feels they aren’t getting the support they need. Whether you see yourself in the first or second description, this book is for you.

What is ‘remarkable’?

Despite this dark picture, the answer to the big question is yes, it’s possible to forge a path to remarkable — to move the dial of your relationship from embattled and exhausted to joyful and fulfilling. I assure you that this is no unrealistic fantasy.

Consider the meaning of remarkable: ‘worthy of attention; striking’. I chose this word to define the goal for your relationship because, in my experience, when a couple is bursting with appreciation, love and joy, they stand out. Their connection is striking to those around them, and their love for each other draws attention. You can’t hide remarkable love. It seeps into everything you do (a lot like chronic pain if you allow it).

A relationship is a space where your identity and sense of security are shaped. This space provides us with meaningful roles and purpose, and when we as individuals are built up in the arms of the one we love, our confidence and wellbeing are striking. What you can achieve because your loved one believes in you is striking. What you can give to others because you’re being given so much in your relationship is worthy of attention, and what you can rise above because your partner stands with you is remarkable.

Of course, remarkable doesn’t just happen, especially not when you’re suffering from chronic pain. It requires a choice activated by love and translated into practical strategies that allow you to rise above challenging circumstances. Remarkable requires you and your partner to make a special effort — no, a commitment — to refuse to allow suffering to threaten your most intimate connection. It doesn’t mean that emotions of frustration, anger, or disappointment won’t arise. But they won’t dominate or interfere with the extraordinary love you’re capable of giving and receiving.

You may have noticed that I haven’t described what a remarkable relationship looks like by listing signs or actions as evidence. There are two reasons. First, because a remarkable relationship is specific. It’s unique to you and your partner’s personal life experiences prior to this moment.

Second, explaining the outward manifestations of my remarkable relationship and foolishly encouraging you to set such markers as your aim will not be effective. Remarkable relationships are built from the inside out. I can assure you, however, that following the guidelines presented here in these pages can take you there.

When your relationship takes a turn toward remarkable, your physical and psychological health will improve2,3 and you might find you can’t keep yourself from kissing your partner, listening to them or dancing with them. The outpouring of love you can experience when you follow the practical steps in this book will be as unique as your pain profile.

The journey begins

One morning, while in the shower getting ready for work, I passed out.

I suffer from spondyloarthritis, a type of arthritis that, for me, inflames the spine and sacroiliac joints (where your lower spine and pelvis connect), as well as peripheral joints. Just to make it more fun, it also results in enthesitis (inflammation where ligaments and tendons attach to bone) and it has affected various organs. According to my specialists, I’m a ‘treatment-resistant’ individual. This means the medications that work for the majority of people with the same condition don’t work for me.

After I passed out in the shower, the next thing I remember clearly was Johann at the foot of the hospital bed speaking with the doctor.

‘Can you tell me about her most painful joint?’ the doctor asked Johann.

‘It’s her hip,’ he replied, pointing in the general direction of his right hip.

I was surprised Johann wasn’t able to name the sacroiliac joint we had spent thousands of dollars treating.

‘What medications does she take?’ the doctor continued.

Johann said something inaudible then came to the side of my bed and searched my handbag.

As I lay watching that interaction, I recognized the small pieces of information about my condition and treatments that Johann was unable to explain. Not because he lacked concern. I just hadn’t educated him during those first months on the finer details of my health journey. I remember feeling as though I’d invited him to join me on a sports field to play a game he could name, but he didn’t know the rules.

Are you on the same team?

Getting on the same team is the first all-important step on the journey to remarkable. In the book The Seven Principles for Making Marriage Work, world-renowned marriage researcher Dr John Gottman and co-author Nan Silver explain the importance of knowing your partner’s ‘love map’, an understanding of each other’s world.4 As author Steve Maraboli points out, it’s the two of you versus the illness, rather than one partner against the other.5

To draw closer to your partner and experience a remarkable relationship, both of you need to share a strong foundation of understanding your condition. It begins with expanding your love map to include the details of your pain. You need to be on the same page about your pain and the ways your health currently challenges you, both personally and as a couple. It’s you and your partner versus chronic pain. Not you and pain versus your partner. When you believe this, you’re already a third of the way to a fulfilling relationship in spite of pain!

Now, I’m not recommending you tell your partner a week into your relationship about every hospital admission you’ve had, although that question has actually slid into my inbox many times. (‘Karra, when is the right time to tell my partner about my condition?’)

I can’t judge the right time for you, but you should ask yourself at some point in your long-term relationship if your partner understands everything about your health journey. Chronic pain tests you, and at some point it will change you and colour your life experiences differently. When that happens, your partner needs enough information to clearly see your chronic pain as separate from you — the incredible and valuable you.

The next chapter gives you the resources to do this essential groundwork with your partner, so you’re both prepared to tackle pain together — hand in hand.

Long and short

» Research and experience confirm that chronic illness and pain are huge challenges for couples to navigate.

» It’s possible to achieve and sustain a remarkable relationship despite chronic pain.

» Each ‘remarkable’ relationship is unique, but following the guidelines in this book can lead you there.

» Getting on the same team as your partner is the first all-important step on the journey to remarkable.

2

ON PAIN

It is difficult for partners who have never experienced chronic pain to understand it. The fact that pain is invisible and many of us have no outward indication of its severity makes it quite complex. Your personal experience of pain adds to that complexity. So, before you sit down with your partner to share the details of your condition and pain, it helps to gain an understanding of the nature of pain itself, specifically the mechanisms of pain systems in your body.

What is pain?

Let’s start by looking briefly at key ideas about pain. To pay rent while studying for my masters, I taught anatomy to university students. Some shared my excitement about how the human body works, others found the topic excruciatingly boring, so stay with me here. The more informed you and your partner are about pain, the faster you’ll be able to gain more control of it, find the right support and communicate about it in helpful ways.

In the United States, it’s estimated that 20 million individuals suffer from chronic pain1 and in the United Kingdom, the prevalence, depending on the study, ranges between 35 and 51.3 per cent, or roughly 28 million adults.2 Brazil recently reported that 31 per cent of its general adult population experiences chronic pain.3 These are staggering numbers and you know what that means?

You. Are. Not. Alone.

If you’ve recently been diagnosed with chronic pain, it might be helpful to know your healthcare team diagnosed your pain as chronic because your pain continued past the usual healing period of damaged tissue, typically three months. There are a number of ways health professionals refer to chronic pain. You may have heard your doctor use the term persistent pain, long-term pain or long-lasting pain. In this book, I’ll use the term chronic pain most frequently but also persistent pain.

Right now, thankfully, research into chronic pain is creating a buzz and there are some findings being reported that have the potential to improve the way we understand and manage our pain. The first of these findings is that the amount of pain we experience does not directly correlate with the amount of damage to our body’s tissue or the severity of our health condition.4 A lot of factors are involved in the pain process that contributes to the experience of painful sensations.

How we experience pain

The reason the amount of pain we endure does not directly relate to tissue damage is because pain does not come directly from damaged tissue. Our brain (well, our central nervous system, or CNS, which is our brain and spine) detects a threat to our body and considers all of the available information to answer the question, ‘How dangerous is this really?’ This includes information from the tissues, but also includes other information like scan results, how others you know have healed from similar injuries or illness, situational context and past experiences. If your brain decides your body requires protection, then it may make pain as a kind of alarm.5 This includes all pain, no matter how it feels.

Sometimes the body protects you with other things, like a fight or flight response. What a sophisticated brain we have! It’s highly protective and can use pain to keep us from harm!

Sometimes, though (there’s always a but, right?), our pain system (also referred to as our danger alarm system) becomes too well practised at sending these warning signals to protect us from harm. With increased practice of triggering pain, the brain can increase sensitivity to threats, pushing the nervous system into an ongoing state of high alert. This enhanced sensitivity in the CNS and constant state of high activity is often referred to as central sensitization.

Ever wondered why your partner’s soft touch doesn’t feel as gentle as it used to? Maybe you’ve noticed your pain now amplifies or echoes into other areas of your body that previously weren’t painful? Central sensitization is likely the culprit, often said to be the complication that puts the ‘chronic’ in chronic pain.

The best explanation of this process I’ve come across uses the idea of an overactive house alarm. Let’s say your house alarm is like every other, set to trigger in the case of a break-in. Over a couple of months, though, you have multiple break-and-enters to your home so you change your alarm settings to sound at the detection of any movement around your home, rather than an actual break-in. This creates a problem. Now your alarm sounds frequently whenever it detects small, non-threatening movements around your house. Your alarm has become too sensitive.

For a person with persistent pain, it’s common to experience central sensitization and, just like the house, have an alarm system that’s overly sensitive to changes in your body as well as movements, thoughts, feelings and circumstances.

What I hope you can understand from this brief explanation is that for many of us, our pain can become more intense not because our injury or conditioning is getting worse, but because of changes in the pain system that make it more protective. Because of this, it’s important that we’re aware of the things that sustain this heightened sense of sensitivity in our pain system, and the things we can do to retrain our pain system to be less protective.

If you were to knock on my office door today, roughly 70 per cent of the time you’d find me deep in work (on my laptop or in a meeting), and the rest of the time I’d be stretching while listening to music. Why? I’ve got to know my personal pain system and learned stressful meetings and projects are activities that wind up my CNS. Just one song and a stretch, though, is enough movement and relaxation to reset my sensitive body (ultimately avoiding a flare-up of pain). In fact, I’ve listened to half an album intermittently since starting this chapter!

What you can do

Many of the effective pain-control strategies suggested by research are based on the knowledge that stress hormones, such as cortisol and adrenaline, exacerbate pain, and certain happiness hormones, such as endorphins, dopamine and serotonin, can dampen danger signals and decrease the experience of pain.