What Matters To Me

Some words of wisdom bounced up onto my Twitter feed a few days ago.  Words worth taking notice of.

“Our main question should be “what matters to this person?”, not “what’s the matter with this person?”

– Sir Mason Durie

To put these words in context, Sir Mason Durie is a now retired psychiatrist and professor of Maori Studies in New Zealand.  He is well known for his leading roles in reform and issues of Maori health and Mental Health Services here.  I admit that when he speaks, I listen.  He knows what he is talking about and more importantly he seems to care about his patient.

We all know the experience of being labelled with illnesses, both physical and mental.  Those labels tend to carry with them some assumptions and stigma.  When I go to see a new health professional, regardless of whether it is my physical or mental health that is at question, I go with some trepidation.  Borderline Personality Disorder (BPD) carries with it some terrible assumptions about the person to which the label has been applied.  I tend to go in armed for battle.  I have to convince this person that the assumptions about BPD are not who I am.  Of course, if I go in too ready to fight for my right to be accepted in spite of BPD, I know only too well that I will then be labelled resistant and argumentative.

Sometimes I just can’t win. There are times I go in with resignation on my mind.  It’s going to be too hard to fight and so I just have to accept that because I have BPD this health professional has already jumped to conclusions of who and what I am.  And of course, sometimes I am simply too unwell to fight.

But why should I have to go into a doctor’s office with labels and battles?  How do they really assist the doctor to treat me?  I can accept that it’s convenient to think of me, the patient, in terms of half a dozen (perhaps more if I’m really facing the truth) labels.  It’s quick.  It’s easy.  Labels are faster than sentences of pain expressed.  So I can see from their perspective it might be simpler.  But do those labels really help me to be treated appropriately?  I don’t think so.

The fact that I have BPD does not make me the same as another who has  BPD.  Actually there are over 250 variations of BPD before we start talking about severity and coexisting problems.  The fact that some psychiatrist along the way diagnosed me with BPD, doesn’t tell any doctor anything about how to treat me.  Any doctor can say what is the matter with me but only if they are prepared to listen to me will they know what matters to me.

How BPD affects my life?

What makes it difficult?

And the all important, how they can help me to live a fulfilling life?

I know that a doctor having the time, let alone the inclination, to ask me, to listen to me, is a bit of a sad joke considering the workloads of health professionals.  A doctor listened to me the other day, and because of it, he was running behind on his schedule for the rest of the morning.  He had to choose.  Did he listen and help with what mattered to me?  Or did he keep everyone else on time?  I appreciate that he chose to listen to me, to hear what matters to me, but I accept that probably no one else in his waiting room appreciated their extra wait.

Yet I’m sure there has to be a way that this can work.  If a doctor, or any health professional, approaches me with an attitude of what is important to me, then I have to get better treatment than if my needs and desires are just assumed on the basis of a label.

My labels don’t tell anyone who I am.  They don’t even tell me who I am.  If I use the example of BPD again, reading the list of what makes up a person with BPD will not tell me, or anyone who I am, what my needs are or how best I should be treated. Having BPD says virtually nothing about me, except give a convenient label.

What matters to me is that someone will listen and hear what I have to say.

What matters to me is that I get taken seriously, and not just dismissed as just another patient.

What matters to me is that they care to ask how this illness affects me.

What matters to me is that someone cares enough to find out who I really am.

When I think about it, I have seen dozens of doctors over the years.  I couldn’t count.  But there is only one doctor (a General Practitioner) I can think of who repeatedly took the time to find out what mattered to me.  By doing that, he helped me.  Maybe I wasn’t cured, but maybe I lived.  That’s what mattered to me.

“Seeing modern health care from the other side, I can say that it is clearly not set up for the patient. It is frequently a poor arrangement for doctors as well, but that does not mitigate how little the system accounts for the patient’s best interest. Just when you are at your weakest and least able to make all the phone calls, traverse the maze of insurance, and plead for health-care referrals is that one time when you have to — your life may depend on it.” 

― Ross I. Donaldson, The Lassa Ward: One Man’s Fight Against One of the World’s Deadliest Diseases

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11 thoughts on “What Matters To Me

  1. Sigh. Yeah. It’s like everything conspires to not allow a person-patient to get the help they deserve.

    Lack of time, pressure from middle and upper management to see as many patients as possible, lack of compassion, pressure from other patients that don’t want to wait for an hour to be seen because the doctor is taking the needed time with a previous one, you name it.

    Sigh

    1. Big sigh. It is a shame that so much of patient care is driven by the dollar. I’m convinced that somehow we need to find a better way. But then those managing the dollars will never agree with me. :\

  2. John Richardson

    I don’t like labels either. My experience with them are in an entirely different arena but my observation is that they are used to diminish a person or argument and don’t really serve any really good purpose. Most times the person using them, in my opinion, is trying to hide ignorance while at the same time claiming authority.

  3. That quote makes me think of another important one, less known (and certainly much less practiced) than it ought to be. Hippocrates said, ‘It is more important to know about the person who has a disease than to know about the disease a person has. ‘ Approximately. I haven’t got my quote-book, where I copied it down, in front of me.

    What a wonderful find, a doctor who really listens! My primary does, mostly, but because of the nature of our relationship we do sometimes start squabbling like a father and daughter, at which time I am not listening to him, either. 😉

    I get so honestly upset, because I think of all the mental illnesses that exist, BPD is absolutely the most stigmatized and even demonized.

    Love to you.

    1. I like that quote. It’s so important although it seems that most of medicine ignores it today. I was very lucky to have that doctor who listened. He really saved my life, and for a while saved my marriage. Shame I don’t still live in that city or I’d still be his patient.

      Actually I think it is a great thing to be able to squabble with your doctor. Unfortunately I can’t at present, but if you can then I believe there is always hope that he cares enough about you as a person to listen.

      As for BPD, demonised is a very good term. Shame on the world who creates it that way. 😦

  4. Such a good post and great premise. I also liked, “Maybe I wasn’t cured, but maybe I lived. That’s what mattered to me.” Which ties it to one of your linchpins: hope. The fact that one of your doctors listened to you helped you – and those two facts together gave you hope. Which helps you carry one for another day.

    Your comments about doctors here reminded me of something that my mom quoted to me from someone. “Doctors can take you apart – but they can’t always put you back together again.”

    Or, as the question came to me during my mother’s last few months on Earth, going from doctor to doctor because of what one or more of them had already done to her: “Why can’t doctors fix one thing without breaking something else?”

    1. That is so true, sadly and unfortunately I don’t think many doctors have a handle on that. It’s not so much that they can’t cure, but the damage they do in the meantime. 😦

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