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 to Rekindle Romance While Living with Chronic Illness

By Barby Ingle, PNN Columnist  

Living with chronic illness can put a strain on any relationship, particularly marriages. To help other couples, my husband Ken and I have I decided to share our learned wisdom on how to rekindle romance in a chronically ill partnership.   

My first suggestion is to keep track in your pain diary so that you can remember the details. Record at what point during sexual intimacy that pain occurred or increased, and what the circumstances were when your pain subsided. Putting your thoughts on paper can help you understand the underlying issues and complications, and regain control of your intimacy.

Although Ken and I did not use a therapist, there are techniques that a therapist will suggest that can help a chronically ill person normalize their symptoms, which boosts self-esteem and lowers feelings of isolation. Improved self-esteem can enhance virtually every aspect of your life, including strengthening your relationships.

A life change due to health problems can be a common trigger for lowering how you perceive yourself. The challenge is to identify that this is going on and create an intimate connection with your partner at the same time.  

Take a look at what you are doing. Are you alienating yourself or your partner? If so, why? Think about your behaviors and beliefs. Are they holding you back from intimacy?

Consciously thinking positive thoughts can boost self-esteem, but it takes practice. How you approach it can make all of the difference. Start with simple words and reminders to yourself. Then reconnecting with your partner will become easier. 

Rekindling romance could be as simple as a few words, a gesture, or a look or touch that will let the other person know you are okay. Be conscious of this each day, so that not a day goes by without a kind word or gesture, even if you are not having sex daily. And really, who does that when they’re in constant pain?

Try this the next time you are washing your hands at the bathroom sink: Write “I love you” on the mirror with a soapy finger or lipstick. This can help create an intimate moment.  

Be the one to take control if your partner is afraid that they will hurt you further because of your current pain level. Be sure to reach out and let them know you would like to have a sexual experience. Say, “Do you want to have sex right now?” or whatever cute, sexy or clever way feels natural to you.  Lead the experience to relieve their worry.

Spouses often have different sexual desires. Turning your desire totally off just because of pain can cause harm to your relationship. Your partner probably married you expecting a healthy sexual relationship. Holding back on intimacy can lead to the end of a marriage or even infidelity.

The last thing a chronic pain patient needs is more discomfort. But when intimacy increases pain and leads to avoiding sex or even cuddling, the relationship suffers. Don’t let this be the beginning of a vicious cycle of no sex.  

What can you do to increase the connection, romance and sex that you have with your partner? When you are talking, try to share your struggles about staying close. You can also share positive thoughts, such as sex helping you cope with chronic pain. 

I hope that these tips can help you rekindle any lost sparks with your partner. All those things you don’t say could be keeping you and your partner on different pages. Turn on the power of romance and make your relationship stronger.

Believe me, I understand how difficult it can be to push yourself to be romantic when all you want to do is sleep or cry from the pain. Having a close relationship physically with your partner can make a huge difference in many areas of your life.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website. 

How to Recover From a Painful Breakup Caused by Chronic Illness

By Ann Marie Gaudon, PNN Columnist

What no one talks about. Getting “dumped” because you have chronic pain or illness. Let’s talk.

There’s no denying the unbearable emotional pain if someone you love decides they’ve had enough. The reality is that people can be cruel, including people that you never thought had it in them. Here’s a few zingers I’ve been made aware of:

“You’re always in pain and I’m sick of it!”

“I never signed up for this sh*t!”

 “I’m so done looking after you!”

Sound harsh? It is, and it happens. While the breakup might be blindsiding, the reality is that the partner has likely been emotionally disengaged for some time. By the time they say those words, they are essentially over the relationship. However, for the person hearing them, they are likely in the initial stages of grief.

If you’ve seen messy breakups in the movies, you might think the answer is fuzzy pajamas and a litre of chocolate chunk ice cream. This will take more than a visit with Bridget Jones.

MRI brain scans have shown that the withdrawal of romantic love activates the same brain mechanisms that get activated when someone suffering from substance abuse goes through withdrawal. That is powerful pain. This would explain why we can obsess over ex-partners and crave them as if they were a drug we've been deprived of.

How to help yourself? Ensure the thoughts you have about your ex are realistic and balanced. If your memory consistently goes to that “best night of your life,” remember all the other nights that were upsetting to you. If you are consistently longing for their loving embrace, remember the nights that your advances were rejected.

What Went Wrong?

If you’re really struggling to get a grip on the reality of the relationship, write a list of all the reasons that it went south. You will see that it wasn’t 100% due to your pained body.

The point is to take a wider look and get a better perspective on the entire relationship. While you are emotionally depleted, your focus will tend to be narrow and unrealistic.

Accept explanations that fit the facts -- such as they were unwilling to make a commitment or they were not the person you thought they were. Avoid creating a harsh inner critic about why the breakup happened and see the relationship for what it was. Make a list of compromises that you made in this relationship that you would rather not make next time. What did you learn about yourself? Can you grow from this?

Do not check on your ex through social media. This will make it harder for you to stop fantasizing about your relationship and spending your time marinating in self-pity while imagining your ex out there living their best life sans you. Remove reminders of your ex such as photos, emails, or messages which will only add to your distress.   

Take control of your behaviour. Do things that used to bring you joy, even if they don’t at the moment. Continuing to engage is a very important way to tell yourself that life does go on. 

Reach out to friends, family or other loved ones to gather all the support you need. We all know what breakups are like and we all have our own words of wisdom to offer.

If your grief is not lessening with time, reach out to a therapist. A trusted therapeutic relationship can help you find your voice to express your grief in a healthy, healing way. A skilled therapist can also help you to develop new social relationships and a sense of self-worth to help decrease isolation and pain-related depression.

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.