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Friday, 16 September 2011

Doctor Danger

I have always had this really strong sense of morality, of right and wrong, so much so I feel ill if I do something that goes against what I believe to be good or appropriate behaviour.  If I have a heated argument with someone, or snap at them because I’m in a bad mood I will always apologise almost immediately and take responsibility for my role in the situation.  That being said, I am no saint and there are many moments in my life I am not proud of.

But as a rule, generally, you want me on your side.  I will stand up to the bully, I will face off with the aggressor, I will protect those I love, or even those who simply need an ally.  So as I watch my community of friends trying to live with this awful condition (CFS/ME) while being discriminated against, I become increasingly furious at how unjust it all is.  Truly it overwhelms me.

In Australia, we are eligible for the disability pension, (as we should be, many of us are house or even bed bound) and yet we cannot access disability support services.  We can get access to transport, but only if we say that the medical treatment we need transport for is not related to our illness.  We are dismissed as hypochondriacs, and yet we die off in numbers that are not documented because our deaths are reclassified as something else.  We commit suicide because no one listens, the pain is too much, the invisibility too great and the frustration too intense.

What scares me more than all of that; is the abuse of power by doctors.  Some years ago I flirted enthusiastically with death after contracting viral pneumonia, I was hospitalised for a week by a lovely respiratory specialist, but not before an ignorant doctor in emergency told me that I was wasting his time, that he could do nothing for me, that I should just go home and not bother coming back.  Thankfully I ignored him; returned the next morning to see the specialist only to be admitted immediately, having to be monitored every half hour for that week, until eventually I had improved enough to be discharged.  But what about someone who wasn’t as strong as me, what if they didn’t have the balls to ignore the doctor and fight back?  What would have become of them?

There are so many stories like this, of close scrapes, of feeling organs shut down, feeling your heart strain from simply moving, of having to crawl because you cannot walk to the bathroom, of going days without showers, of returning repeatedly to the emergency room suffering with excruciating pain and illness, only to be admitted to psychiatric wards.  All over the world there are stories of people who suffer with this illness, but because we do not fit in the neat little boxes designed to make doctors feel smart and safe, we are treated like hypochondriacs.

Imagine having HIV before anyone knew what it was.  Imagine feeling this rotten wrong thing wrapping tendrils round your system.  Imagine going to the hospital, telling them your diagnosis and watching their body language change and their tone lower to condescension.  You know it’s biological, you know it is not psychosomatic, you know there is something rotten inside you, but they just look at you dismissively and talk quietly with the nurse about discharging you with some paracetamol.  As you become more outraged at their treatment of you, you are so ill, so tired, in so much pain, you cry and raise your voice in frustration.  They nod to you and steal glances with each other, you are only reinforcing their belief it’s all in your head.  Can you imagine living like that?  Needing help and treatment, yet unable to seek it for fear you will be intentionally misinterpreted and maligned?

That is what it is to have our diagnosis.  That is why we say we would rather have Cancer or HIV or other politically incorrect things.  Not because we don’t understand the gravity of those illnesses, having experienced what we have we would never doubt nor underestimate the suffering of others.  No it is because those illnesses have treatment, awareness, options, research, support, and statistics on survival or death.  People look at me incredulously when I say I would rather have most any other life threatening illness.  But if you were to walk in my shoes, you would understand.  There is no certainty, but I can fight against that; there is no treatment, but I can pray for one, but to have people treat you like a hypochondriac while you suffer so much quietly against all hope… that is too much.  I would rather know the likelihood of my death, than to have to fight not only this insidious illness, but with the very people who have been entrusted with the job of treating me, and yet instead they shake their heads and dismiss my suffering because I refuse to fit into their neat little boxes.  And the irony of all ironies, those few brave doctors that risk treating us, specialising in the treatment of our illness, face the same treatment metered out to us by their colleagues.  They too are ridiculed and scoffed at.  The rare doctor that can think laterally and outside the box is the one that can treat this enigma, but few risk ruining their career by doing it.

A quote from, Dr. Nancy G. Klimas, who is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. 

My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”

Dr. Mark Loveless, head of the AIDS and Chronic Fatigue Syndrome Clinic at Oregon Health Sciences University, in 1995 testimony at a congressional briefing, noted that a "Chronic Fatigue Syndrome patient feels effectively the same every day as an AIDS patient feels two months before death."

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  1. 'first do no harm' these doctors (and others denying support that is so desperately needed) have ANY idea of the damage they do? and thank goodness for those precious few who are prepared to put themselves in the firing line and fight for us. it shouldn't be this simply shouldn't.

  2. (you is one tough warrior woman marzi - definitely someone i want in my corner. XXOO)

  3. You've written a very powerful account of what life with severe M.E. is really like. Few want to know. Many, many NEED to know.

  4. Thanks sweet Kae.

    And thank you Liz, and thanks for taking the time to read! I hope that if you are suffering with this, that you are doing okay.

  5. Love having you in my corner, my big sissy xox

  6. A strong and real and tragically all too true blog. Bravo, Marzi, for telling our story. It is so wrong that people who haven't experienced our reality first hand cannot believe it, think we exaggerate, when the truth is the reverse. Hang in there.

    " We are dismissed as hypochondriacs, and yet we die off in numbers that are not documented because our deaths are reclassified as something else. " Exactly.

    You write well. Thank you. I'll be back xx

  7. Thanks for taking the time to read Jace, and for your generous comment. Hopefully this story won't always be true for us. xo

  8. Bravo! Well said, I am going to re post on my facebook page. xx

  9. truly incomprehensible! This should be happening. Such a closed minded profession. Thank God for the ones that are fighting for us. Thanks Marzi, for articulating it so well. I didn't know about the transport issue, that seem ridiculous to me. As Kae said you are one tough remarkable warrior woman for sure.

  10. Well written - powerful and mind jolting! And rings all too true. When Josie became ill at age 13, we eventually ended up at a children's hospital. Their treatment was so abusive - from dismissive to bullying to blaming ... unbelievable looking back on it all - it was truly so awful ... Many years and many doctors later, we're still battling ...
    Thanks for telling it like it is Marzi. :) xo

  11. This is why I don't see any Dr. and they have nothing but to make me worse with trips tests medicines I can't take anyway..... it is sad that the black bag of olden days was meant to also offer SUPPORT and CARING>>>>> well said marzi again. karin kalabra.....

  12. Say it, sister. It is shocking to encounter dismissive and negligent attitudes from medical staff when you're in dire need. Thank goodness you went back to that hospital and were able to receive appropriate care in the end.

  13. Hey Karin, thanks for reading. I know it's so hard. Thankfully I have one of those rare doctors that puts his career at risk to help us. Without him I think I would have died at least three times over. xoxo

    Greenwords - isn't it? It is so outrageous, I just don't understand how they get away with it. And thank you I did eventually. Thank goodness for the good docs mixed in with the bad, but it is like Russian roulette. xoxo

  14. You asked what I think. I like it! I'm always glad to discover another articulate blog.

  15. Thanks Flo and thanks for popping by to read! 8)


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