The PFAM Blog Carnival Is Up

PFAM = Patients for a Moment and is a collection of blog posts written by patients.  This month's topic was how to get the attention you need from the health care system.  There are many good tips.  Have a read at Hidden Courage.

Should You Bring Your Partner To Your Medical Appointments?

I would say categorically, "Yes!" as long as you know your partner will be more helpful than controlling. There are several reasons why I ask Richard to accompany me, and he does likewise.

He is my memory.  When I see a new doctor, or a known doctor, it's usually at a time when I am confused about what is happening in my body and am feeling those sneaky upswings in pain.   Sometimes they just appear, uninvited and unmotivated by anything I did. When this happens, I go right to anxiety, and if the pain spikes don't subside, I call a doctor.

When I'm in this state, my memory operates in 30 second loops.  Richard is the container for the content of the whole office visit.  He remembers, and he takes notes.  He also asks questions from a different perspective than mine so we leave with richer information (which he remembers).

I also ask him to accompany me because I have one of those conditions that is elusive, with pain as the main symptom.  Therefore doctors, who need to do something, throw a lot of recommendations and medications at me.

I'm a minimalist.  I want to do the least that will have an impact.  So Richard also acts as an educated sounding board.  Alone, I would do too little and wind up back in the doctor's office.  Together we can come up with a solution that meets my specifications, and also makes sense and is most likely to have an impact.

Another reason I bring him is that together we get taken seriously.  Initially, I didn't realize that having both of us in the room would have an extra impact.  I noticed, over time that there seemed to be a slight difference, mainly with new doctors, in the way I was listened to when Richard was there.

Now, I'm white, educated, mature, assertive, have excellent grammar, and terrific insurance.  So I generally get the attention I need.

But when Richard is present, the (usually) male doctor, tends to look at him more than at me.  And spends more time in the room with us.  And since I often don't remember specifics -- like exactly when did the symptoms get worse -- and Richard, who is a scientist, does -- I think his provision of accurate data carries weight.  Whereas my more elusive telling of my story --  in which I emphasize what it feels like and not when it occurred -- may not connect as well with a scientific minded doctor.  Or it may be that seeing me as more than the pain patient in room 4, but as someone who is loved and has a life, may make the difference.

Do I like it that this is the case....no.  Will I use this advantage when I need to....yes.

I do find that Richard's presence doesn't make as much of a difference when the doctor is female.  Hmmm.

So, to add to the degree that I get taken seriously and get what I need (and to have a memory of the visit) I often bring Richard with me to appointments, especially to the first few.

And if you don't have a partner, or a partner you'd want to bring along, ask a friend to accompany you. We all could use that extra support.

What do you tend to do -- bring your partner, a friend, or go solo?

The Patients For A Moment blog post collection is up at Duncan Cross

Duncan chose a very interesting theme - What do you do to recharge?  The posts are insightful and worth having a read.

Angelina Jolie's Choice

Many of you by now have heard about Angelina Jolie's choice to have a double mastectomy.  This is such a personal decision that I dare not comment on anything other than her ability to go through whatever it took to come to her decision.  I'm sure it took a lot.

One thing I do know that it took, as she noted in her New York times Op Ed, is the support of her partner.

Not many, if any, commentators focused on the couples part of her story.  But consider the discussions they had, the times they held each other and cried, what they laughed about, and what kind of future they are imagining (because even with this surgery, it's not over).

She wrote:
"I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has."

While essential, it's not just about the partner's love and support.  It's about his carrying the load with her.  Entering into it.  Feeling empathy, and sympathy.  Understanding when to discuss, when to lie in each other's arms, and when to share what this means to him.  It's about holding hands and jumping off the platform together into a future you never envisioned when you made your commitment to each other.

A friend sent me this Zen teaching.  This is what I wish for this couple, and all of us:

Welcome everything.

Push away nothing.

Bring your whole self to the experience.

Don't wait.

Find a place of rest in the middle of things.

Cultivate don't-know mind.

Recharging

Both Richard and I are in the patient position right now.  He is recovering from open heart surgery that replaced and repaired heart valves.  And I am on my familiar pain roller coaster, which of course, is reactive to Richard's state.  It's as if we're hard wired into each others nervous systems.  When he has heart flutters, I have pain poundings.  When my pain is rising, he develops the empathy blues, which is not healing for his heart.

In the past, when I was the sole patient, if I sank into the pit of doom, I could count on Richard to shine the light of hope.  His commitment to my improvement would infuse me with something like hope.  His presence and kindness, replenished me.  And when I felt better, emotionally and physically, he grew lighter.  That was our pattern.

Now we are on new turf.  Both of us patients.  He can't tolerate too much doom, and I slide down the slick walls of the pit too easily when I don't hear his voice calling to me.

As unfamiliar and disturbing as this disruption is, it is also a call to action.   I confess, with embarrassment, I have gotten too comfortable with the patient position, too self protective.  This inversion of roles is actually recharging me -- inviting me to step more deeply into my own capabilities and into taking care of the person I love most.

I spent 14 hours a day by his side when he was hospitalized for 10 days.  Now that he's home, I do the shopping, the laundry, and take out the garbage.  Little things - but markers of engagement with the world.

My biggest surprise is that as I do chores for Richard's benefit, and do them with love, I grow stronger, and I have a wider field on which to show my love.

btw -- I don't recommend this route to anyone as a path to recharging and becoming bigger than you think you were.  But it was given to me and I'm liking the results.

Two Other Books to Recommend

I highly recommend these two books.  They will create openings for you:

The Last Best Cure, by Donna Jackson Nakazawa

Here's a bit about the book:

One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That’s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. For years, she’d been living on what she’d come to think of as the “Pain Channel.” She wanted to tune into the “Life Channel” instead. As a wife and mother of two, she was determined to get her life back. As a science journalist, she was compelled to understand why her brain might be her last best cure.

How To Be A Friend To A Friend Who's Sick, by Letty Cottin Pogrebin

Here's praise for her book:

"How to be a Friend to a Friend Who's Sick gives us excellent tools and moving experiences to love and nurture the sick and dying.  It urges and enables us to move towards those in need rather than fleeing in terror or despair.  it is a handbook of kindness and care and will help patients and healers, which is ultimately all of us."
-- Eve Ensler, playwright and activist

Book Recommendation: In the Kingdom of the Sick by Laurie Edwards

I think you will get a lot from reading Laurie's book -- as I did.  Here's a quote about the book:

"...People with chronic illness owe much to advances in medical technology, but they also are aware both of the limits of science and of society's throwback belief--subtle or blatant--that people who are sick have weaker character than those who are well. Through research and patient narratives, Edwards looks at the origins of these attitudes, and from the advent of modern vaccinations through present day, she traces the experience of being a patient with chronic illness through such cultural influences as the disability rights movement, the women's health movement, and the rise of the Internet and health 2.0 technologies..."

Critics call In the Kingdom of the Sick "surprising, revealing, and beautifully written," and a "probing, clear-thinking examination of the new medical crisis on our hands: chronic illness."