How Chronic Pain Affects Relationships

By Victoria Reed, PNN Columnist

People with chronic pain are often engaged in a battle with their own bodies. Unfortunately, sometimes we also struggle to be believed and supported by family members, friends and doctors. While some may be fortunate to have a supportive spouse or significant other, many pain sufferers lose their life partners along the way, as well as friends.

Pain can take a toll on our relationships. In my own experience, a good friend slowly faded into the background during a particularly difficult time when I was having numerous flares from rheumatoid arthritis and fibromyalgia. The flares cause debilitating fatigue and severe pain. I would often need to cancel plans and never could (and still can’t) predict which day I would wake up feeling awful.

Sometimes when I did not cancel plans, I would end up being miserable the entire time and would regret my decision. Eventually, the invitations and phone calls dwindled, as I was probably considered unreliable.

During that time, I would go for weeks struggling to function and keep going for the sake of my family and young children. But life doesn’t stop when you have a chronic illness. Homework still has to get done, as well as housework, financial matters and shuttling the kids to and from school and to sporting events.

One time, as I was driving my daughter home from gymnastics practice, I was so tired that my car ended up nose to nose with another car in a turning lane! I just barely missed having a head-on collision! Fortunately, the woman I almost hit wasn’t angry, but was actually concerned and asked if I was okay. The experience was frightening because I’d put my child in danger by driving when I was so fatigued.

It was then that I realized how serious my fatigue was and worried about the effect it was having on my relationships and family. Unless you actually experience this kind of fatigue, it can be hard to really understand it.

Additionally, my husband (at the time) was having trouble coping with my illnesses. We had been married for 18 years when we decided to divorce. I obviously wasn’t the same person that I was in the beginning and couldn’t contribute an equal share in the relationship.

The truth of the matter is that chronic pain is hard on everyone. It takes its toll not only on those physically suffering, but on spouses and significant others as well. Some make it known that it’s not working, while others quietly build resentment until they can no longer stay in the relationship. Then, seemingly out of nowhere, it’s “I want a divorce” or “I’m leaving” or “I can’t do this anymore.”

Perhaps they are overwhelmed by increased household chores and responsibilities or feel neglected in some way. Or maybe they fall out of love because you are not the person they married or agreed to be with. Perhaps they are stressed because of the additional financial burden resulting from your lack of income. Perhaps they don’t believe in your illness or think that you are faking your symptoms.

I certainly don’t have all the answers, but you must then pick up the pieces, move on and try to create a new life for yourself. If you have kids, you may have guilt about having an illness or believe that you are the cause of your family’s dismantling. 

Having chronic pain is like having a third person in the relationship. That “person” demands constant attention and spends many hours trying to get between the two of you, taking time away from you and your loved one.

However, if you are lucky enough to have that special someone who is capable and willing to deal with your chronic illness and truly understands and accepts, it might not mean the end of your relationship. Many people do stick with and endure the challenges of having an ill partner. It takes a very special person to be able to do that.

It’s good to have a few good friends who are supportive and understanding, rather than a bunch of people who say they are friends, but never step up to the plate. I’ve learned that family members who can’t be supportive have no place in my life. I believe it’s important to surround myself with positive people. Negative people can be emotionally draining and almost always are takers, rather than givers.

Those of us who have been abandoned must move on for our own emotional and physical well-being. As awful as it might seem at the time, it gives us the opportunity to meet new people who are able to give the love, support and compassion that we deserve.

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.

The Social Consequences of Chronic Pain

By Ann Marie Gaudon, PNN Columnist

When someone suffers acute pain from an accident or injury, a positive consequence is that it evokes care and compassion from others. However, when that pain becomes chronic, you don’t often receive flowers, cooked meals and offers of help. Your social connections may suffer, too.

That’s not a small issue for pain patients. A 2008 study found that maintaining social activities are just as important for people in pain as many of the physical and psychological consequences of chronic pain.

Let’s take a look at a short list of five ways that chronic pain challenges the maintenance of social relationships.

1) Reduced participation in social activities  

Chronic pain physically takes people away from their social networks. Pain flares can be a disincentive to planning and engaging, and can inhibit participation in activities. Fear of judgment can also lead to social withdrawal. And a lack of invitations to social gatherings may mean others are judging or making assumptions about your capabilities.

2) Impaired interpersonal functioning

Chronic pain induces self-focused attention by latching your attention on an area that may be under threat. For example, persistent back pain may draw your attention away from others and put it on your lower back. 

When attention is taken away from others, it reduces your ability to show empathy, social interest and attentiveness. This in turn reduces pro-social behaviour and impinges on your ability to self-regulate and monitor your emotions -- skills we rely on to adapt our behaviour to different social situations and norms.

For example, we might want to laugh loudly while reading a funny book in the library, but we stop ourselves. Or we might be at a work event and notice there is no foul language, so we self-monitor and do not swear ourselves.

These types of social skills require attention.  When chronic pain is taking up attention, there will be less capacity for self-regulation and self-monitoring. The end result: pro-social behaviours suffer.

3) Chronic pain and negative mood

Although being in a bad mood is a normal but unwanted reaction to chronic pain, it is not considered socially appropriate. Pain sufferers often try to mask their mood to help others feel more comfortable.

Negative moods are contagious and can influence the mood of other people, resulting in less enjoyment for everyone. It can also induce more negative judgments and bias against others.

4) Loss of social roles and identity  

Social relationships are founded upon shared social identities and interdependent social roles. For example, as we grow and develop, we have childhood friends that we have much in common with and are close to. But as we become adults, we often go in different directions and no longer have so much in common.

Relationships erode or dissolve because of this. If a chronic pain patient can no longer work, enjoy activities or be on a team, this can erode self-identity and the commonalities that were once in place with friends.

5) Difficulty connecting with others  

Chronic pain can lead to a focus on the differences we have with others, rather than the similarities. This can fuel beliefs that you are less than, not reliable or even less competent due to your pain. As a result, you may withdraw from others rather than others removing themselves.

This is not an exhaustive list but it gives you an idea of the challenges faced in the social world by pain sufferers. It’s important for overall health to assess your social functioning as part of a biopsychosocial approach to pain management.

As a therapist, I need to understand a patient’s level of satisfaction with their social roles and identities, and the health of their interpersonal relationships with others in order to help them with strategies and coping skills to restore and maintain their social connections.

Interventions can be utilized such as group therapy, which is beneficial in the realization that you are not alone, and for strengthening relationships, reducing isolation, helping you to find your voice, and providing a safety net. Support groups offer many of these same benefits. You may learn helpful information and gain hope from the social support of others. Many support groups are free or charge a nominal fee.

Therapy can also provide social skills training. And couples training can help caregivers understand their loved one’s pain and acquire their own coping skills to avoid burnout and social isolation.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

Do You Know How To Say No?

By Ann Marie Gaudon, PNN Columnist

Such a tiny word. Such a powerful one. For toddlers and teenagers, saying “No” comes easily. Then something changes. Some of us as adults would rather stick pins in our eyes than say no to anyone. That’s a problem. An even bigger problem if you suffer from chronic pain

You likely know the drill. Your body is screaming in flared pain -- red flags for rest and self-care. But you don’t say no to your neighbour who needs help with a chore. You don’t say no to babysitting your nieces at the last minute. You don’t say no to that extra job your boss asks you to stay late for. 

The inability to say no is directly linked to our need for approval from others. Why do we crave their positive opinion? There are many reasons, but for our purposes let’s just talk about chronic pain patients and some of the reasons we can’t say no.

The consequences of unrelieved pain can include but are not limited to:  depression, anxiety, impaired function, financial distress, sleep and appetite disturbances, identity erosion, social isolation, relationship conflict, demoralization, and feelings of helplessness and hopelessness. They can all disconnect you from your family, friends, work and social life.

In a herculean attempt not to relinquish “who we were” before the pain, we don’t say no. Our hearts scream out: “I’m still a son/daughter! I’m still a partner! I’m still a parent! I’m still a good friend! I’m still a valued employee!”  We instinctively try to stay in the group in order to survive. We must be accepted and approved at all costs!

What are the personal costs of not saying no?

Anxiety

We only have so much time and energy, and yours is steadily eroded by other people’s demands. You may begin to experience anxiety attacks. Constant worrying and catastrophizing can lead to heart palpitations, sweating, headaches and other physical manifestations.

Depression

Constantly giving in to the demands of others and consistently falling behind in your own life can lead to feelings of low self-esteem, a major contributor to depression. If you spend your time catering to others without focusing on your owns needs, you can lose track of what you want and who you really are. This loss of identity feeds into anxiety and depression.

Relationship Breakdown

In the beginning, saying yes all the time may be appealing to you and to others. But as time goes by hidden resentments may surface or you may feel manipulated.

If you cannot say no, you’re not being honest about your feelings for fear of hurting someone else’s. You may not even be honest about how much pain you are in.

Honesty is a cornerstone of healthy relationships. Saying yes when you truly want to say no isn’t being honest – to yourself or anyone else.

Stress

Too much stress isn’t healthy and can be devastating to pained bodies. It’s exhausting trying to please everyone all of the time. Exhausted bodies are stressed bodies. You’re more likely to experience low grade colds or illness, have trouble sleeping, and feel more pain.

The inability to say no is problematic to your mental and physical well-being. It serves no one – not you or others – to be consistently saying yes when your body says no. You are not being true to yourself or to them.

Others cannot see your pain or understand what your needs are, so they are not given a chance to respect them. It’s really a lose-lose situation.

How does a pain sufferer get themselves out of this unrelenting pattern? Here are four tips I’ve learned:

1. Make Your Pain Visible

If you were in a wheelchair, your disability and limitations would be obvious. But when your pain is invisible, others may need to be educated. It’s time to fess up about what you are capable of and what you are not. Your health demands it.

You’ve likely heard this before: If you don’t take care of yourself first, you will never be able to take care of others. Think of the flight attendant teaching us how to use our oxygen masks in case of emergency. You always put your own mask on first to get the oxygen you’ll need to help others. It’s just like that with pain. When your body says no, it becomes you first.

Some people feel shame in telling others that they suffer from chronic pain. They feel broken or weak and don’t want others to know. This is an erroneous self-belief. It creates an invisible boundary between yourself and the rest of the world.

You = bad, broken. Everyone else = good, whole.

This is emphatically untrue. You are not different from the rest of the world. Everyone suffers in some way, shape or form. It may not be from physical pain, but it will be from something else.

It may not be the easiest conversation you ever have, but it’s one of the most important ones.  Some folks provide educational material about their pain condition to help explain how debilitating it can be. You might be pleasantly surprised when you give people a chance to understand. They may embrace you with compassion, respect your limitations and treat you accordingly – just as you would for a loved one.

If you don’t say no and make your pain visible, they’ll never see the authentic you. They only see a façade: You wearing a “yes” mask. Is that fair to either of you? 

2. Create Boundaries  

When you’re learning how to say no, it’s easy to get caught off guard so be prepared. Sometimes well-meaning loved ones will try to coax or guilt you into doing something you really don’t want to do. Have a narrative ready. It could be something like, “I know I look fine, but my joints are hurting so much it’s getting hard to move. I’m just exhausted and I need your support right now.”

Or perhaps something like: “Sorry, I cannot help with that because I’m in a pain flare today and need to take care of myself. I’d really like to help when I am able to, so next time around, ask me again.”

Boundaries for support from other people need to be firm. If not, you risk no one taking you or your pain seriously.

3. Simplify Your Social Life, But Don’t Abandon It  

What about social occasions? How do you handle an impromptu invitation from a friend when your body is telling you to stay put? Living as well as possible with chronic pain is all about constant adaptations.

Perhaps there is something you could attend if someone else did all of the driving?

Maybe you can go to a potluck dinner, but your contribution is store-bought?

Loved ones want to get together for a meal? Dining out is a terrific choice because there’s no cooking or clean up involved.

Can’t keep up with your friends at the gym? Let them run on their treadmills or go to cardio class while you walk around the track. You can all meet up later for a stretch and a green tea.

Family wants to go bowling, which is something you’re not physically capable of? No need to miss out. Let them bowl as you sit and chat with them as they take their turns. You might be pleasantly surprised your inner circle is just happy to have you there and that they’ve come to understand your limits

4. Yes, But…

How do you RSVP to an invitation when you have no idea how you will feel at that time?

How about this: “Thanks, I would love to come but there is a chance that it may be a flared pain day for me. Can I confirm with you the day of, if that’s okay?” This is a regular of mine.

It may turn out to be a low pain day, in which case I’m attending.  If it’s a medium pain day, I’ll put my psychotherapy tools to work and go. If it’s a very high pain day, I am staying home.  

Framing it this way makes it much easier for me to bow out at the last minute. I do this both socially and with work-related meetings. If I’m not able to make it, we re-book so they know I really do want to attend, I just need to be well enough to do it.

There are some very special and rare occasions where I will say yes even if my body says no, such as a wedding or special birthday event. In that case, I will not book myself for anything or anyone for a couple of days after so that I can fully recover.

Say no when necessary. Simplify and adapt to your needs when necessary. You first. It’s not selfish, it’s self-compassion. Chronic pain patients could all use more of that. Seek help if you need some.  Most therapists are well-versed in self-compassion.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.