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.

A Pained Life: Keep it Simple

By Carol Levy, Columnist

Simple always seems… so simple to me, especially if it’s medical-related and even more so when it involves pain.

When I was 23, I developed a terrible pain in my left arm. And oddly, whenever I turned my head, the pulse in that arm disappeared. 

My journey was typical. I had trouble getting a diagnosis and was told it was psychological. The doctors were not thinking it through. How can someone psychologically obliterate a pulse? 

Finally, I was diagnosed with thoracic outlet syndrome (TOS). My symptoms were text book.

At the time, I was a physician assistant student and one doctor had lectured on TOS. Knowing I had it and without asking me, he directed students to have me turn my head and feel the pulse disappear.

Finally a thoracic surgeon told me, “I'll operate and remove your first rib. That should help.”

It sure did. I woke up from anesthesia and the pain was gone, and my pulse no longer disappearing.

A physical therapist also suggested an exercise: “Run your fingers up and down the wall a few times every day.” She never explained why.

“This is so silly,” I said to myself. After all, I was 23. I knew everything. What good can something this simple do? Just silliness. So I didn’t do it.

And I have had problems with my shoulder ever since. For over 40 years. All because simple seemed... too simple.

One more example. This time easy as pie escaped the doctors, except for one. 

Facial paralysis from trigeminal neuralgia sometimes causes my left eye to not close completely. As a result, my eye sometimes dries out to the point where it needs to be sewn closed. I abhor this, but I have had it done a number of times through the years. In truth, they wanted it to be done permanently 30 years ago. But they respected my choice not to.

On one occasion, three doctors agreed the eyelid had to be closed. Even the one who usually held out came on board. A fourth doctor was relatively new -- new enough to think outside the box -- and realized there might be another solution. 

Every night I taped the eye shut, using tissue paper and tape on both sides of the eye patch.

“Before we close it, let’s try this,” she said. “I want you to add one more piece of tape, directly down the middle.”

Seemed silly. You know, too simple. But I tried it anyway. And voila! The eye cleared within a day.

Between me and the doctors, simple often seems too silly, too unsophisticated, and unscientific. We are so accustomed to the harder answers: more drugs, more treatments, and more surgeries.

I regret greatly that the easy answer for my arm seemed so preposterous at the time that I refused to even try it. But I am so grateful that Dr. Smith saw the simple and made the suggestion anyway.

We get accustomed to high tech solutions, higher level treatments, stronger doses and more difficult surgeries.

I realized my journey is akin to going up a ladder. It is tempting to skip the first or even the second step on the ladder, forgetting or ignoring your pain. But each step carries more risk, and climbing the ladder becomes more difficult and dangerous the higher you go. 

Sometimes simple is exactly what we need.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

Pain Companion: Talking About Pain

By Sarah Anne Shockley, Columnist

A lot of us don’t like to talk about our pain, understandably. It often seems easier just to live with it in silence than to discuss it with anyone. Ever.

If others have never experienced long-term pain or are pain-avoidant, it can be nearly impossible for them to understand what we’re talking about. We may be answered with blank stares or outright disbelief.

Or, what often happens is that others feel they must try to fix us. We are offered all kinds of medical advice, given the business card of a favorite massage therapist, or web address for the latest miracle supplement. Or we’re told exactly what we don't need to hear: buck up, carry on, be more positive, grin and bear it. Fending off the well-meaning fixers can be exhausting, so we just keep quiet.

And, when we do talk honestly and openly about our pain, sometimes it feels like we’re walking right into the center of it. We become very present to it, and if it also feels like we’re not really heard or validated, we’ve added another level of emotional pain and disappointment to our physical pain. So why bother?

These are all perfectly understandable reasons for not talking about pain.

So why would we talk about it?

Because the alternative - never fully expressing to anyone what we are going through at the deepest levels - is much harder in the long run.  As you probably know quite well, living with pain can be extremely isolating. We are alone in our unique and deeply intimate experience of pain.

While we have very good reasons not to talk about our pain with everyone, if we never talk about it we can feel increasingly disconnected from others, from life, and from ourselves. And I know from personal experience that this can be a very difficult way to live.

For eight years, the only person who understood the full extent of the pain I was in was my neurologist. For all of the reasons listed above, I simply never told anyone else how bad it really was. And I can say at this point that living with pain doesn't get easier and life doesn’t get better by not talking about it. That choice only increases the feelings of invisibility, isolation, and disconnection.

However, talking openly about pain is a tricky business. Finding someone who can be with us and just listen is challenging because so many think they are being helpful by trying to distract us from our pain, or help us overcome, avoid, or downplay it.

People are so geared toward ending pain that they are not always prepared to just be with us and be a compassionate witness. And some people are living with their own unexpressed pain, whether physical or emotional, and they just don’t have the capacity to hear about ours.

So, I would not advocate talking about your pain to just anyone.  It requires a somewhat selective process. There are friends and family that you would like to be able to share with who will not be willing or able. Think about the people in your life that you consider good listeners and who you can trust to truly have your best interests at heart.

Even if there is no one you know who has experienced physical pain in the way that you have, there will most likely be someone who has experienced a deep loss or had to face very trying circumstances that will give them a deeper sense of compassion for what you are going through. They may have been dealing with their own private pains and you may be surprised to find out that they understand about hiding, isolation and loneliness. If you feel there is no one like that in your life, then a trained therapist can be a good choice.

Once you’ve ascertained that this person is an appropriate choice and they are agreeable, then help them understand that what you need is a pair of receptive ears and a receptive heart, and that talking about your pain won’t make it worse, but will actually help you.

Tell them that what you are going to share may be difficult for them to hear, but that you really need them to just be there and hear it without offering anything back for now. Ask them to please hear you out without trying to change anything, fix anything, offer advice, or console you.

Before you have your talk, see if they are willing to agree to the following ground rules:

• Listen to your story without interrupting
• Be present with you in your pain without pity and without fixing
• To not offer advice, just witness

Let them know that the most supportive thing they can do for you right now is not to try to make it all better or make it all go away, but to just be present with you and let you have your pain and not try to change anything for now.

You may want to tell several people, but you may also find that one trusted person who can see you, hear you, and be with you in it is enough. Then, of course, express your gratitude in whatever way you feel is appropriate and let them know what a great gift they have given to you.

And, perhaps when you are done telling your story to this person, on another day, you can offer receptive ears and a receptive heart to them.

Sarah Anne Shockley suffers from Thoracic Outlet Syndrome, a painful condition that affects the nerves and arteries in the upper chest. Sarah is the author of The Pain Companion: Everyday Wisdom for Living With and Moving Beyond Chronic Pain.

 Sarah also writes for her blog, The Pain Companion.

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.

Pain Companion: Breathing Exercises for Chronic Pain

By Sarah Anne Shockley, Guest Columnist

Can your breathing patterns actually affect your pain levels?

Over several years, and born from the desperation of having no effective pain remedies, I discovered some simple breath exercises which helped decrease my acute pain levels and increase my overall well being.

In the fall of 2007, I contracted a particularly severe case of Thoracic Outlet Syndrome (TOS). Briefly stated, the area between my collarbones and first ribs collapsed, squeezing the nerve ganglia, muscles, arteries, and veins that have to fit through an already narrow breathing space.

This caused a myriad of symptoms, including burning, aching, shooting pains, and tingling in my hands and neck, and a reduction of mobility and function in my neck, arms and hands.

Over the next several years, I tried various forms of physical therapy and a number of pain medications, none of which improved my TOS and most of which exacerbated the squeeze in the thoracic area, inflamed the nerves, and swelled the tissues even more, causing more pain.

Finally, I was pronounced permanently disabled and left to my own devices.

The only thing I'd found that helped keep my pain levels stable in all that time was walking. So, walking slowly for about 20-30 minutes a day and staying as quiet and calm as I could became the sum total of my pain management protocol.

After several years of stoically putting one foot in front of the other, both figuratively and literally, I thought, there has got to be something else I can do here.

I meditated before my injury and knew that calm meditation was often good for reducing stress as well as increasing overall health, so I thought it might help my nerve pain. It certainly couldn't hurt.

Except that it did.

The meditation forms I was familiar with called for sitting with an erect spine and breathing deeply and evenly.

Unfortunately, sitting in any one position for more than a few minutes increased my pain. Trying to keep my spine straight increased my pain. Breathing deeply increased my pain.

So much for meditation. Every so often, I would try again to see if anything had changed, but got the same results.

Yet something good did come out of it. In the process of trying, I began to pay attention to my breathing, at least for a few moments. Eventually, I noticed something startling.

Every time I began my brief little excursions into meditation, I noticed that I was holding or restricting my breath, as if I was afraid to breathe at all.

So I began watching my breathing patterns and putting my attention on my breath at various times during the day, whenever I thought of it.  I didn’t do anything else at first, I just paid attention.

What I noticed was that I was taking very shallow breaths and then stopping my breath in between them. I don't mean that I was filling my lungs with air and holding my breath. I mean I was barely breathing. Since breathing deeply increased my pain, I was unconsciously trying not to breathe.

This is understandable, and maybe it's something that you do too. If you check in with your breath right now, are you inhibiting its flow in order to try not to feel pain? Just notice that.

The problem with holding back the flow of breath is that it blocked the natural flow of oxygen in the body, and made the body tenser. I realized that I might be inhibiting the body's natural healing process by inhibiting the breath.

So, I started some experiments.  The first thing I did was notice my breath at different times during the day.  Then, I started consciously taking an easy breath and releasing it a few times calmly and freely. I didn't try to breathe deeply since that increased my pain, I just simply released my breath to flow more naturally.

The second thing I did was stop using my breath to push against pain. That meant I had to let pain be where it was without as much resistance from me. It was as if, by withholding breath from the pain - trying not to breathe in the painful area - I could force it to leave, or die, or I wouldn't have to feel it.

The third thing I did was to begin to breathe with the pain. In a sense, I included pain in my breath, rather than trying to stop it by not breathing in the painful area. I first imagined breathing around the pain, and then I imagined breathing through the pain, and then I imagined breathing with the pain, as if pain were breathing with me at the same time.

In short, I allowed pain to have breath.

This seems counterintuitive to most of us. We want to stop our pain, so we stop the flow of our breath. But it doesn't seem to work that well. Pain is already part of our experience, so resisting it doesn’t usually bring good results and it creates more stress and tension in the body.

Accepting pain for what it is and breathing with it helped me create a great deal more relaxation in the body, and thereby began to relieve the acute levels of pain I was in.

It seems like a paradox, but I found that giving pain permission to be where it was, so to speak, and allowing it breath, actually helped it to begin to move on.  I also noticed increased energy in my body overall, and I felt better emotionally.

After having worked with breath for several years now, I can say that, for me, these little breath awareness exercises have made a great deal of difference in my pain levels and overall well-being.

Sarah Anne Shockley is the author of The Pain Companion: Practical Tools for Living With and Moving Beyond Chronic Pain.

Sarah also writes for her blog, The Pain Companion.

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.