A Chronic Pain Game

When I was a child, my girl-friends and I would play a game we called "Senses." We each had to pick one of the five senses we thought we could live without.

Most often, smell was the sense that we decided could be disappeared with little consequence. It was unthinkable to lose sight. Without hearing we wouldn't be able to listen to the Beatles. Without taste, we wouldn't be able to enjoy ice cream. Losing touch was incomprehensible. So we usually opted for smell.

Not a particularly compelling game, I admit. No prizes or victories involved. Just a familiar conversation that rolled over the same terrain and landed at the same finish line each time.

I think we used it as a way of lightly touching something truly alarming without risking serious consequences. Like passing your finger quickly though the flame of a burning candle. We converted something horrible into a game we could control, and thereby magically turned what might be fate into a free choice.

Fast forward four decades.

When I finally realized that my chronic pain was not casual and would not go away despite my doctors' best efforts and my many prayers and tears, I panicked. Richard (my sweetie) and I began hunting down medical specialists and alternative practitioners. Sometimes I had 4 or 5 appointments a week.

It was during this period of frenzied activity that I began to resurrect the Senses game, but with a twist. This time instead of asking, "What sense could I live without?" I asked myself, "Which would I rather have -- this physical pain or severe depression?" "Pain or lung cancer?" "Pain or dementia?" "Pain or macular degeneration?"

More often than not, especially if I was in the thick of a hammering pain episode, I preferred to be stricken with the other disease. But the important thing this game offered me was a way to insert a mental space between me and the pain. This game, like Senses, positioned pain as a choice, not a fate.

Not that I could just choose to not be in pain. I tried that..... a lot. It never worked. But, if I could place pain in a context of choice , I was moving pain outside of my body, for just a moment. I was contemplating pain rather than being pain.

I know this is getting kind of existential - the difference between being pain and having pain. But pain had taken over not just my body, but my every thought and breath. When I wasn't in pain, I anticipated being in pain. This game placed pain and me in a different kind of relationship. I was apart from pain, making judgments about it.

To drive this tiny, imaginary, even foolish wedge between me and pain was a start. From there, over time, I began to imagine even greater distances between us. I began to meditate and focused on condensing pain into a smaller and smaller ball. I concentrated on my feet or hands, places pain never reached. I imagined healing waves of blue water flowing though my body, carry bits of pain away with each new surge.

The more distance I could put between me and pain, the more I felt that my life was returning to me.

Medical Error : The Human Dimension (article in New England Journal of Medicine)

The October 25 issue of New England Journal of Medicine had an intriguing article entitled “Guilty, Afraid, and Alone — Struggling with Medical Error.” This article was also covered by the New York Times. It focuses on the need to address the emotional repercussions of medical error, not just correct error rates. It’s not surprising that doctors who make treatment errors feel guilty, may fear a law suit, and therefore tend to do the exact opposite of what the patient and family need – they avoid the person and their own accountability and abandon the family when it is most in need of attention.

Families, including partners of the patient tend to feel equally guilty or even guiltier – for not keeping close enough watch on the patient. They also fear further harm from medical staff if they ask questions about mistakes.

Silence begets silence and breeds mistrust. And once mistrust enters into the family/medical system relationship, remediation and reconciliation move farther and farther away.

The article says that apology and disclosure are necessary but may be insufficient. It concludes with: “Perhaps most important, building bridges to injured patients necessitates including them and other patients in the development of solutions.”

I wonder if medical professionals know how very hard it is for patients to challenge them on any point. When was the last time you said, “No!” to your doctor? I was only able to reject a surprise spinal tap because Richard was in the room with me and saw my ambivalence and suggested we postpone. A friend, who is a medical journalist, could barely fend off a posse of young neurologists who wanted to insert wires into her heart to shoot it with electrical current to clear possible clogs. Her husband blocked and tackled for her too.

Yes doctors who make mistakes need to ‘fess up and apologize. But I think patients and their partners can help each other enormously if they can stand side by side and ask tough questions and say, “No” or “Not now” or “Are you sure? Can you please check again?” or “Why do you think this will help? And what is the down-side?” or “What if we waited?” or “How many times have you done this procedure?”

Have you said, "No" to your doctor? What did it take to do that? And what happened?

Chronic Illness and Emotions: What Couples Can Do to Connect

Part 6 (and the final part, for now) in the series on Relationship Roles and Illness.

Illness can be a demanding task-master. It can consume time, energy, patience, compassion, and even love. It can smash our early relationship dreams of a blissful hand-holding companionship - a happy couple smoothly tripping down the road of life, producing strong children and noble works along the way, and ending in a quiet sunset, supported by a steady retirement income stream.

One of the sadder casualties of illness is our image of our partner. A once charmed, handsome, generous, capable image gets supplanted by the gray profile of disease. Conversation that was once lively and expansive constricts to topics that can be researched on WebMD. The love that brought the couple together can be forgotten, supplanted by worry or detachment.

To reclaim each other, to resurrect or rebuild intimacy, I suggest couples do two things:

1. Be together in silence. When the turbulence of activity slows to stillness, and space is emptied of the words you hurl at your fears and resentments, you may be able to see that unique essence of your beloved that drew you together before illness did its damage. In silence, you may be able to reconnect with the spirit (some of you may call it the soul) that has not disappeared but may be waiting to be roused. Being together in silence may seem impossible. It isn't. And it doesn't have to be for hours, all at once. It can start with an uncomfortable ten minutes three times a week and build up over time.
2. Laugh together. Laughter is not only potentially good for one's health, but it disrupts the rhythm of complacency or anger or sadness. One day, when I was in the thick of my chronic pain condition and in no mood to connect much less laugh, I noticed about seven black socks draped all along the stairs that led to the bedroom. I asked Richard how they got there. He answered, "They're making a break for it....trying to reach the land of lost socks before they're caught." I cracked up. It felt so good. And it felt so good to look into Richard's eyes with lightness in my own, instead of the usual darkness.

For some couples, it's too late to reconnect. Illness has done too much damage; or the relationship was strained to begin with and illness only made things worse. The long haul of chronic illness can become unbearable. For couples in this situation, I would suggest bringing outside resources into the relationship. These can be friends, family, community, or hired help to clean, shop, cook, chauffeur, baby-sit, and take care of the daily care needs of the ill partner. These resources can also be in the form of activities each partner can engage in -- book groups, card games, classes, sports, etc. When your relationship has turned into a source of pain equal to or greater than the illness each partner needs something to uplift him/her and someone to talk to -- be it friends, family, or a therapist.

A Story About Chronic Pain and Roles: Barbara & Richard

Part 5 in a 6 (maybe more) part series on Relationship Roles and Illness

I was housebound for a year, struggling each day to stay a few steps ahead of the pain and rarely succeeding. That was my daily work, my role, and I felt that I could not take on anything that interfered with my primary struggle. On better days, I tried to go for a short walk outside. That was my limit. In retrospect, it may have helped me to be distracted by vacuuming or doing dishes. The one thing I was compelled to do, and was very good at, was internet research on chronic pain and on western and alternative approaches and on finding specialists. I became a lay expert and used that expertise to drive my care. That also became my role.

I was dependent on Richard to deal with the world, and to keep the world away from me. That was his role. He is a master at this and was brilliant at negotiating with our insurance company and at searching out food I had some interest in eating. He felt joy when he was able to solve a problem that lifted my burden a bit, since he felt so helpless in terms of making my pain go away. I, in turn, expressed appreciation for his activities and insisted that he continue working at his job and find a therapist. I knew that he needed normal time – time way from illness, pain, and a crying wife. And I knew he needed his own specialist, a therapist he could share his fears and pains and anger with, because I could not hold his pain and my own.

We checked in with each other regularly about this arrangement. On my better days, I offered to go to Whole Foods or to pick up a DVD (in the days before Netflix). He asked me to let him know when it could work for him to visit his brother in San Francisco. I knew how much he wanted to make that trip, yet I was also afraid to be left alone. We problem solved together and arranged for the two friends I had let into my dark world to Barbara-sit while he was away.

Did our efforts to balance our roles go smoothly? Were we always in synch with each other’s needs? The answer is a big, fat, shrieking, “NO!” Illness is overwhelming, and without consciously remembering that your partner is on your side, the rage of illness can easily trump compassion. There were times I angrily sent Richard out of the room because I thought he just didn’t get what I was going through, and it was too frustrating to try to explain, again. There were times when Richard was fed up with my finding fault at his attempts to help and had to take a break from my despair. Ultimately, we found our way back to each other, because that is what we do.

Practical Advice: How Can Couples Deal with Life, Illness, and Emotions?

Part 4 in a 6 part series on Relationship Roles and Illness (originally a 4 part series, but I realized there's a lot more to write)

On the practical side the couple can set aside a time outside of the turbulence to rationally discuss what strengths each person can bring to deal with daily life and medical demands. Illness forces so many unwanted burdens on us, we tend to feel overwhelmed and that feeling can constrict our sense of our own capabilities – for both partners. Doing can remind us of our capabilities and help us feel more a part of life.

Together, both people can write out a list of what needs to be done. I suggest that the ill partner then go first and state what he/she feels able to do (knowing that this can change and may increase or decrease daily). Can he/she shop for groceries? No. Can he/she arrange for groceries to be delivered (there are services like Peapod or Netgrocer)? Can he/she drive the kids to soccer? No. Can he/she call someone to arrange for transportation? The idea is to find some way for the ill person to stay engaged in the world and hold on to adult responsibilities – while accommodating to the real constraints imposed by illness. This may seem burdensome. But the more the ill person gives away, the more he/she fades away, and the stronger his/her relationship becomes with the illness.

The well partner does not have to pick up whatever remains on the list. The well partner also needs to assess what his/her priorities and capabilities are. He/she may need to work over-time and may not have the time or energy for cleaning the house or helping the kids with homework. And the well partner’s capabilities can also change on a daily basis. (btw -- Craigslist is a wellspring of services and goods).

After the well partner decides what responsibilities he/she can undertake, there will be leftovers. Then both partners think together, constructively, not blamefully, about how they can get help from an outside source to pick up these remainders. Can they hire a cleaning service twice a month? Will their insurance pay for a home health aide to bathe and give medication to the ill partner? Can friends, neighbors, and family be enlisted to prepare meals, chauffeur kids, drive the ill partner to medical appointments?

The most important part of doing this kind of chore/responsibility inventory is not the thoroughness of the list, but rather is the spirit of mutual caring the couple can bring to the conversation. If this activity is done with acrimony, then the efforts each partner makes will carry the extra load of bitterness. If the preamble to this activity is: “We are both having a difficult time. Maybe we’re trying too hard. Let’s, together, figure out how we can be easy on ourselves and make it easier for each other. Because I care about you.” – then the efforts made will be lightened by compassion.

Do We Really Know What Makes Us Healthy? No! So What Can Couples Do?

This past Sunday’s New York Times had a very meaty article that was both disturbing and comforting – “Do We Really Know What Makes Us Healthy?” The main premise is that epidemiological studies can be so fraught with bias, assumptions of correlations, incorrect correlations, and short-term vision that it becomes almost impossible to know what studies to believe. And therefore, it becomes very difficult to know what advice to follow. The long, sad story of HRT (hormone replacement therapy)– initially a cure for aging for women and ultimately thought to be a precursor to increased risks of heart disease, stroke, blood clots, breast cancer and perhaps even dementia --- is a brilliant example of well-intentioned research gone wrong in the end.

But how is one to know what to trust when it comes to medical advice? The author, Gary Taubes, writes, “All of this suggests that the best advice is to keep in mind the law of unintended consequences.”

For a couple holding hands and wandering through the snaky corridors of medical information, it is so easy to get lost. Especially if the health condition crosses the boundaries of several medical disciplines (like chronic pain, back pain, diabetes, fibromyalgia, headaches, and more), the couple is likely to hear not only more information than is comprehensible, but information that may be contradictory.

In seeking help for my chronic pain, one physical therapist who specialized in pelvic pain told me never to bend backwards, while a myo-fascial physical therapist told me never to bend forwards. Vertical or horizontal were the only positions left – neither one tolerable for too long.

While it is disturbing to hear that we can’t really know what medical advice to trust, it is also comforting to realize that this failing returns a good chunk of responsibility for decision making to the patient and the partner. We can feel empowered to voice our concerns and bring our intuition back into the treatment room.

A STORY:

I waited three months for a follow up appointment with the chief of neurology at a renowned hospital. He had me put on a gown and told me to lie on my stomach. Richard was seated in a chair nearby. As I was automatically moving into place I asked him what kind of exam was he going to do. He replied that he was going to do an epidural to test my spinal fluid for signs of infection, since that was one of the few test left undone. I sat bolt upright and started asking questions about the procedure, its risks, and the likely outcome given my medical history. His responses made the test seem much less appetizing. But here I was gowned and ready. And here he was, credentialed and authoritative. How dare I resist!

Luckily, Richard was there. And this is a grand advantage of going through the medical maze with a partner. Richard was able to hold up the stop sign and voice what I had been feeling but was too stressed in the moment to say – “It sounds like we have some doubts about the procedure and aren’t ready to go through with it today.” I could breathe again.

His intervention also opened up a line of questions I didn’t have the perspective to consider. I now place these questions among the top ten to always be asked:

• What will happen if we wait a week? Two months? Six months? A year?
• Are there any alternative ways of getting the same information?
• What symptoms should we be on the look-out for that would indicate that we should have the procedure done right away?

Making medical decisions is one of the arenas where couples can collaborate brilliantly and use the wonderful advantage of having a listening/sounding board immediately at hand. Even if the relationship is strained and torn by heated issues, couples can try to declare an emotional moratorium in order to work together and bring their combined intellect to bear on treatment decisions.

Ultimately, the decision to take the meds or go through the procedure is the patients; and the patient must rely on his/her trust in the doctor weighed alongside of his/her own research and intuition. The partner can be the voice of gentle challenge to the doctor and to the patient, and can infuse the equation with her/her own research and intuition. This is a situation where two loving heads can truly be better than one frightened, overloaded one.

Managing Your Own Care, part 2 - Four More Tips

• Do your own research. For some of you this may be a chore you can delegate. For others, like me, you can’t help yourself –you just do it. I had one pain specialist tell me I was at the maximum dosage of Neurontin, and if it wasn’t working I needed to switch to another medication (one that had a tendency to make patients gain large amounts of weight!). I went into research overdrive and found a specialist in the same field who often gives his patients 50% more than I was taking with excellent results and no side effects. I switched doctors, upped the dosage, and had good results.
• Build an excellent relationship with your primary care doctor so that he/she comes to trust your judgment as much as you come to trust his/hers. It’s easier for your PCP to give you that referral you want (if your insurance requires it) if he/she knows you well enough to know that you don’t “cry wolf” and are smart and judicious about your health care needs.
• Doctors and researchers you talk to do not get reimbursed for the time they spend with you on the phone. Many of the specialists I sought out and “cold-called” on the phone were incredibly generous in sharing their wisdom and time with a stranger. I sent them flowers or made a donation to their favorite charity or sent a thank you note.
  
• Finally – as hard as it can be sometimes, try to be gracious and appreciative to your health care providers. They really want to help you. They’re on your side. They have their own frustrations with the systems they work in. Share your anger with your partner, not with the medical receptionist or the nurse or the doctor.

What strategies have you found helpful in getting the health care you want?

Here's a very good article about Heart Disease and Managing Your Own Care

And another excellent, detailed article on Arthritis and How To Talk to Doctors

Managing Your Own Health Care, part 1 - Four Key Tips

One thing those of us who have traveled for a time down the illness road find out is that not only is the road is full of nasty potholes, but you have to be your own navigator and driver.

My fantasy about how the health system works was that I would be handed maps, chauffeured, and have a team of mechanics making sure I traveled safely. I expected the system to diagnose me, to put me in the hands of an expert treatment team who were in regular communication with each other about the nuances of my care needs, and to make me better.

The diagnosis never happened. The team wound up being a constellation of players my husband and I located. And I was the communication coordinator, carrying my case notes and test results with me from appointment to appointment. At first I resisted playing this role – which was really resisting letting go of my fantasy of being taken care of. But eventually I had to accept that it was up to me and my partner to orchestrate my care.

Here are some of the strategies I learned for managing my own care:

(Let me preface this list by acknowledging that I believe there is white, educated, middle class, American-born, English-speaking, business-savvy privilege/bias involved on my part and perhaps unconsciously on the part of a few of the systems I interacted with).

• Write up your own case history and keep it updated. Make it complete, current, and succinct. Bring it to each appointment and give a copy to each new practitioner.
• If you’re looking for a specialist, it often pays to see the head of the department. He or she most likely got there because of excellent medical (and political?) skills.
• It can take three months, sometimes six, to get an appointment with a god-level specialist. So make an appointment now, even if you’re not convinced you need to. You can always cancel it (And remember to do so if you don't need it. Others are waiting).
  
• Find out if your doctor has email and will give you his/her address – and will use it as a channel for quickie communication. An example of a good use of email could be: "I had a minor headache that lasted about 30 minutes after I started the new medication. There have been no other headaches or side effects. Should I be concerned about this? Should I make an appointment to see you?" I use email with my pain specialist and my primary care doctor. I never overuse this channel and am respectful of the doctor’s time.

To be continued.........

The Moment - 3 key tips for dealing with a serious medical diagnosis

“I’m afraid the news isn’t what we hoped for.”

“We have to begin treatment immediately.”

“The test results showed signs of greater spread than we expected.”

“I’m sorry to inform you that your husband/wife/partner was in an accident.”

“No! This must be a mistake! Please God. Noooooooo.”

Sudden trauma or a terrible diagnosis slams into us like a stray bullet. It penetrates our core in an instant, in the space between two breaths. The before breath was taken in the clear air of our old life. The breath after is drawn in a nightmare world where everything is suddenly frightening and dark.

In the emergency room, in the specialist’s office, in the immediate aftermath of the sudden intrusion of illness or trauma into our life, we are undone, yet we have to continue on and often make medical decisions that even under benign circumstances are difficult. Doctors who may have been strangers a moment ago flood us with information in a language we don’t truly understand and press us to make dire choices when we are still struggling just to keep breathing.

How can we help ourselves and our partner make good choices in this moment when we are emotionally unraveled, yet need to be attentive and wise?

Here are some suggestions:

1. Stop. Step off the medical roller coaster for 10 minutes (or 5 or 3 if that’s all you have) and connect with each other. Touch and breathe together. That moment of contact can give you and your partner strength and room to think.
2. Call a trusted friend and have her join you. She may be in a space to understand, remember, and ask important questions.
3. Ask questions. Among the most important ones are:

• What exactly is wrong?
• How much time can we take to think about it?
• What will happen if we delay?
• What are you recommending and why?
• What alternatives are there (for tests and interventions)?
• Can you explain that in more simple terms?
• (And one of my favorites) If I were you sister, what would you recommend?

Remember, when confronted with bad news, that medical science does not have all the answers and that there can be options to pursue outside of the doctor’s sphere of knowledge. And that where there's life, there is hope.