My Pain Marriage

By Mara Baer

Two years ago this month, I had major surgery to try to address the daily chronic pain that had been with me for seven years. Leading up to that surgery, I was bounced around from specialist to specialist, experiencing many failed attempts to treat my Thoracic Outlet Syndrome, a rare nerve entrapment condition that causes overwhelming nerve pain.

Because the surgery was unsuccessful, the looming anniversary date -- November 30th -- carries a lot of weight as I approach year 10 of my chronic pain journey.

Anniversaries are times of reflection, when we think about where we’ve been and where we are going, celebrate milestones, and commemorate paths taken. We acknowledge wedding anniversaries, work anniversaries, birthdays, deaths, and other important junctures in life.

There are also health recovery anniversaries celebrated by cancer survivors to honor their remissions and recovering addicts who mark their hard-earned sobriety. The anniversary of my surgery brings the same type of evaluation and introspection.

My husband Art and I commonly celebrate our wedding anniversary in a simple way with a nice dinner and a toast.

We just hit 17 years together and noted how much we’ve accomplished; bringing two beautiful kids into the world, making a big move from DC to Denver, and building our own little, special world.

We also reflected on the impact my chronic pain has had on our lives. I shared with him how I feel that I am in a relationship with my pain that is akin to a marriage -- often complex, at times emotional, and deeply reliant on compromise and understanding.

This relationship can feel like a third wheel in our marriage some days, taking over and getting in the way. This is something we both are working to address.    

Mara Baer and Art Maples

And, like a toxic relationship, the “pain marriage” can be all consuming. Chronic pain sufferers commonly report feeling a lack of control and that pain dominates daily life. I’m sure many readers can recall a personal relationship that felt this way.  Just remember that one bad relationship and how it made you feel when tensions were high. Angry. Frustrated. Sad. Helpless. Fearful. Depleted. This is how the pain relationship can feel for most chronic pain sufferers.

Most people in a challenging relationship will say that toxicity feeds greater toxicity, creating a vicious cycle. The pain marriage is no different. When I have been at my lowest due to pain, I found it impossible to have a positive outlook. I tried every ineffective playbook strategy, including disengaging or ignoring it (“pain, you are not there, you just aren’t there”); placating it (not moving, lying in bed, other unhealthy habits); and bargaining (“pain, I’ll do all the right things so you will just leave me”).

I am sure there are others. These strategies never seemed to work. Why? Because like in any relationship, masking or hiding from the raw truth will not be successful.  

All couples argue, and Art and I have had our share. I’ve learned that our greatest challenges come when we are not listening to each other. The words come out, but perhaps my interpretation of his words or his of mine are not the same as what we intended.

When we don’t hear each other, arguments can escalate quickly. It’s the same with pain. When I sense my pain and try to ignore it, I may not be really hearing what my body is telling me.

But when I acknowledge pain’s role in my life and how I feel about it, I can start to gain equal footing or control. Then it’s not about “winning” (like winning an argument), but about managing the dynamics between us.

It might sound odd that I’m referring to my pain in this way. But only when I started to accept pain’s presence could I start to change the nature of the relationship. This is why acknowledging that I am in a relationship with my pain is one of my chronic pain truths.

So as my surgery anniversary nears, I may not be toasting the journey, but I will be reflecting on the ups and downs of my pain struggle, and also celebrating my new outlook and path. I know I’ve got more work to do, and I’ll admit that I am still learning. But when it comes to my pain relationship and my marriage to my spouse, both are worth the effort.

Mara Baer is a writer and health policy consultant offering services through her women-owned small business, AgoHealth. Mara is a member of the Science and Policy Advisory Council for the National Pain Advocacy Center and recently launched a chronic pain newsletter called Chronic Pain Chats.

How Chronic Pain Changes Family Dynamics

By Lana Barhum, Columnist

Chronic pain can have a strong impact on the relationships we have with our families. Most of us are glad and appreciative when we have families that help us get through some really tough days and make life more enjoyable. Unfortunately, for many pain sufferers the support of family is lacking.

Chronic pain can make you angry, moody and intolerant.  As a result, we sometimes take our frustrations out on those closest to us.  Sometimes we just want to be left alone and our loved ones, even though they have good intentions, won’t leave us alone.  Further, we can feel guilty for what we put our family through and try to make up for it, often feeling like we fall short.

As a single mother who lives with chronic pain, I feel like I fall short sometimes when it comes to being there for my boys.  I hurt on most days, but on the days where the pain is tolerable, I do everything I can to be there for them. On days when the pain is bad, I just want to be left alone.  I feel guilty my boys don’t have the mother I “think” they need and deserve.

Some days, I tell them I am hurting and pray they forgive me for being irritable, tired and wanting to be left alone. Other days, I feel like a version of myself I can’t be proud of.

It might be something different that gives you guilt and makes you feel like you fall short.  Perhaps you don’t speak up about your pain because you are afraid to be a “complainer.” Maybe you have spoken out, and felt your family wasn’t supportive. Or maybe your family reached out and you just prefer not to be a burden them.

Family Roles Change

Many people with chronic pain feel their families do not understand or believe their pain.  I, too, have felt that way.  This is upsetting because chronic pain is invisible.  It changes from day-to-day and there is no way to prove the extent of it or how to get others to believe it. 

The person who is physically hurting may start taking on a dependent status, which can lead to depression and feelings of helplessness.  Another family member may start to handle the majority of the family responsibilities and start to feel resentful. 

All these factors -- alone and combined -- cause stress on even the best relationships, leading to arguments, conflicts, isolation, withdrawal and discord in the family structure.

Chronic Pain and Marriage

Chronic pain is the worst on couples. Studies show relationships where one partner has health issues are more likely to end compared to those where health is not an issue.

A 2014 study from the University of Michigan looked at 20 years of data on over 2,700 married couples and found that 75% of the marriages in which a spouse had a long-term health problems ended in divorce. Divorce was even more common when the wife got sick. 

The partner in pain isn’t the only one struggling.  In fact, according to the Caregiver Action Network, spouses who become caregivers are six times more likely to become depressed.

It is difficult to adapt when your spouse or partner develops a health condition or gets injured, resulting in permanent pain.  After all, everyday life has changed and so has the future you planned together. Both partners have to make adjustments, which can lead to fear and anxiety.  Healthy spouses can also try to shield themselves from the reality of chronic illness, adding further stress and strain to the relationship.

My Experience

I wish I could share some good advice and personal experiences on how to make family relationships work despite chronic pain. But I can only commiserate.

I was diagnosed with rheumatoid arthritis and fibromyalgia in 2008, and everything went downhill from there.  My marriage didn’t survive chronic illness.  My family didn’t understand and they still don’t. I have been depressed – even suicidal.   I have struggled in more ways than I am willing to admit.

Dealing with lack of support from the people who are supposed to be there for you isn’t easy by any means.  I have been fortunate because I made many new friends since have being diagnosed, who understand my struggles and who have been there for me when I couldn’t rely on family. 

And even when people bailed on me, I learned to support and hold myself up.  I got help from a professional in dealing with my depression and learned to cope with the many challenges chronic illness and pain brought into my life.  I take better care of myself because I need to be there for my boys, and I remind myself daily these experiences make me stronger, wiser and better, with or without family support.  

The Take Away

All families face obstacles, but some just aren’t strong enough to bear the fallout from chronic pain and illness.   The extent of family disruption depends on the seriousness of the pain and illness, as well as the parties involved. In some cases, major health issues bring families together. For others, even the simplest challenges tear families apart.

The fact is, families take work.  And we always have two choices.  We either keep trying or we give up.  Sadly, too many give up.

Lana Barhum is a freelance medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, 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 represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.