In surfing around the internet, I came across a very interesting study on the link between the immune system and the brain.

We intuitively know that there must be a link:  we experience that we are whole selves, not parts.  But medicine seems to study disease by disease, not the interrelationships -- until now.

There are more and more studies that address how one thing affects another and, in this study, the scientists looked at how chronic inflammation (like in rheumatoid arthritis or heart disease) creates a depressive response.  The inflammation itself changes the chemistry in the brain.  This debunks the older idea that depression is a reaction to a disease, or even another form of poor coping with a chronic illness.

Instead, here we see that the disease of depression is the biochemical reaction to inflammation -- not a psychological failure or a maladaptive reaction to pain and limitation.

These studies were done on mice, and so there is a way to go before we can make definitive correlations to people, but I think there is something to pay attention to in this research.

Often our impression of depression is that it is a failure of will or a personal weakness -- not a serious illness with its own symptoms that go away when properly treated.

Classic signs of depression are feelings of hopelessness, sadness, and futility, along with sleeping problems, irritable moods and angry outbursts, lack of energy, and gaining or losing weight.  Recent statistics suggest that one in ten people have depression, and among those with RA newer studies put the incidence at twice that of the general population.

Depression is vastly under-treated because people feel embarrassed or ashamed.  In addition, many people don't want to be on yet another medication.  They "don't like taking drugs."

The tragic downside of this is that, when someone is treated for depression, it goes away.  They feel better.  They have more energy and the world seems like a friendlier and easier place to be.

What the inflammation research tells us is that, if you have RA (or another chronic illness with inflammation), the depression is a result of that disease.  It isn't your fault, and it can be treated.  You don't have to live with all those sad, angry, painful thoughts all the time.

To read the article, click here.

If you suspect you might be depressed, talk to your doctor and get an evaluation.  Don't be afraid of a brief course of anti-depressants.

You want to enjoy -- not just endure your life.

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A client of mine was struggling.

He has been living with rheumatoid arthritis (RA) and working full time.  He supports a growing family and wants to do everything he can to make their lives happy, healthy, and secure.  He loves his wife and wants happiness for her, so he will bend his schedule, take on household maintenance, and shoulder extra chores to make her life easier.

The result of this effort is that he is usually tired, and is regularly overwhelmed.  He doesn't know how to change his life -- and he's not sure he wants to.

My client isn't living this way just because he's a super nice guy (although he is).  He is living a script -- a story he told himself about who he is.  It's a story that makes him feel proud of himself and, even more than that, secure.  He knows what his life is about.  He's a breadwinner.  He's a fix-it guy.  He's reliable.  He can be counted on.

Most of us have a story.  Even when we're not aware, it lurks in the background, under the radar.  It's the story of who we think we are -- and who we're not -- and it is a subtle picture of how we believe life should go.

For my client, life was about responsibility, and also about the satisfaction of being in charge.

Then he had a diagnosis of RA.

His life changed. But his story didn't.

That happens a lot.  We think a diagnosis, or a family trauma, or a loss, or even something wonderful like a new job, shouldn't change us that much.  We move on.  If it's an illness, we treat it like it's just another add-on in our busy lives.

The result is that we miss the challenge and the opportunity that life has given us to grow in a new way.  To live differently and explore other parts of ourselves.  It is not easy.  We usually wouldn't choose the pain, the disruption, or the limitation that life seems to be offering as a pathway.  There are difficult choices.  These may mean saying no to a long held dream, or something we feel we should have.

My client began to suffer from severe flares, and he couldn't do everything for everyone anymore.  He had to ask for help.  He had to let go of some independence, and his story that he was The Go-To Guy in the family.  This was hard -- even humiliating for him.

The process of changing our story is a complicated one.  We are walking in the fog -- inventing ourselves as we go.

When we begin to emerge from these life- and psyche-altering times, there is surprise -- and often good news.  No, our life is not what we thought it should be.  But there are amazing compensations that we could not have imagined.

My client found his wife rose to the challenge of his illness magnificently.  Yes, he had wanted to protect and cherish her.  It was a startling gift to feel protected and cherished by her.  He let go of some of his compulsive management of family life, and found he could be a dad who relaxed as often as he worked.  It wasn't a quick or painless journey.  But as he allowed his story about himself to soften and evolve, he discovered hidden treasures.

I wonder what version of your life story you are clinging to -- and what you can let go of to allow new realities to emerge.

What is the new story you might begin to tell?

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The video on STILL'S Disease featured on the site this week raises a host of difficult questions and concerns.

This column is addressed to parents who are navigating the complicated terrain of caring for a sick child, although those of you who are caretakers may also find something that speaks to you.

Before Diagnosis

Persistence matters.  Follow up on tests, uncertainties and symptoms.  You are the best judge of what your child needs – seek advice and don't be afraid to keep asking questions.

Listen to your gut.  I have seen medical people (with all the best intentions) try to calm someone down, and miss what matters.  If you are concerned or worried, find someone who will listen.

Be informed – study, join discussion groups, read, read, read, and search for similar symptoms and situations.

Build Your Team

You are in charge.  I say this to adult patients, and it is just as true when you are advocating for your child.  You have to take responsibility for managing the medical care.

Talk to your doctor.  If s/he isn't responsive to you, move on.  You need a doc who is part of the team and who listens and works well with your family.  I know:  It's an overwhelming and scary time, which is why you need the doctor -- and the doctor's staff -- to be with you, NOT resisting you.

Nurses matter.  Your pharmacist is part of your team.  Your religious leader, and any other grownups who can help you sort through options, and make serious choices are part of your new tribe.

Keep track of records.  Don't expect the medical establishment to take care of this.  Keep copies of X-rays, test results, prescriptions for yourself.  Start a journal and take good dated notes.  Keep track of symptoms, and side effects.  Your record is part of the team.

This is a time to call in your markers.  Even if you're not a person who depends on others, get over it.  You need them.  You need friends who bring over meals, who run errands, do research, and who listen.  Your neighbors, your family, your dog.  They are all part of the great embracing team of support.  But you need to invite and allow them in.  Don't be a martyr.  There isn't time.

Communication

This can be hard, but your child needs the truth.  Not knowing is scarier than being trusted with the real story.  But you don't have to tell them everything.  Start small.  Let them know you are there for them.  Tell your child that lots of people are on their side and figuring out how to make them better.

Allow feelings.  Yours and theirs.  This may take practice.  Sometimes when someone we love is sick, it seems overwhelming to admit to fear, or sadness, or being so vulnerable.  But if we practice saying things out loud, that takes away some of the power.

I know a child who was so frightened by the grim faces, and the sound of her mother crying at night that she was sure she was dying.  It was a relief to be told that she had a disease, and that it could be treated and that her mother was sad because her daughter had to suffer.  The little girl could deal with that, and was able to say how she felt.  In the cleared air, there was a brightened mood.

You are the model.  If you shut down, no one will feel safe to express anger or worry or even joy.  If you have trouble doing this, find someone to talk to about it -- a therapist, a priest or rabbi, a wise friend.  Your habits and moods set the tone for the family.  Practice good ones.

Don't assume how everyone else is.  Ask.  Listen.  Receive.

Time Out

This is one of my constant themes:  When you are doing the hard work of caring for someone you love, you need a break.  You must take a break.

The airlines have it right when they tell us, "in the case of oxygen failure, when the little masks drop, put your own mask on before you try to help anyone else!"  You can't be on this mission unless you are taking care of your own physical, emotional and mental health.

Talk to your friends, read a novel, get a massage, take a walk, go out to eat with your partner ... You know what stokes you -- what music, beauty, food, dance, or play helps you remember to breathe.

Stay close to your spiritual center -- mediate, pray.  Avoid people who can't help themselves and bring up scenarios that worry you or make you feel like you're not doing enough.  You are.  You are enough.   You are doing enough.

Trust that your child is getting through this, with all your help and energy and love.

Breathe.

Now you have rekindled the stamina and the heart to do what you need to do.

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