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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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Thursday, 1 September 2011

Crazy Cat Lady

It was innate in me, the predetermination of my fate as a mother.  I was never one of those people that planned to be married and have a child by a certain age, but I always knew I would have children at some point.  So this last birthday, yesterday in fact, was particularly bleak.  Because now I have had to face the reality that I will not be a mother, that I will not nurture and raise my own child or any child. 

I am thirty-four, which again, has never bothered me.  Age didn’t really worry me, but looking at it refracted though the lense of illness, is different.  Each year is another nail in the coffin of motherhood.  And this year, it has been inescapably dark. 

Throw most anything at me, and I’ll keep getting up, keep fighting, but the realisation that I will never hold that role has near obliterated me.  So much so I have found it hard to even admit to myself out loud, for fear I might sink never to get up again.  It is not that I am without hope that I will ever get better, but at my age with the combining factors of Endometriosis and PCOS it would have been a battle anyway.  Then just recently I had this revelation,  I have always known that short of finding a brilliant partner to support me, that it would be impossible while I am sick to even consider mothering a child, but then I realised that there was a good chance, if current research is correct, that I could pass on this insidious beast to my child.  And there is no way I can gamble on that. Ironically the fierce protective mother in me won’t let me be one.
But I am a Ma to two fur babies.  And as much as I used to take the piss out of obsessive pet owners with their stupid pet clothing and accessories and toys, I’ve now become one.  I draw the line at clothing, but toys and furniture, I’m all for it, because without my two fur babies, this blow would be too much.

So my adoration for them has increased if that is even possible, and my heart sometimes feels like it might burst because it just cannot fit all that love in there.  In moments when things are at their worst, when I cannot move but cannot sleep, I put my ear to the bed and Tobey’s purr reverberates through my head and I listen to his sighing breathing and it puts me to sleep.  Then when I toss and turn, Cooper lifts his head off his front paws and chats to me, berating me until I lift the doona so he can crawl under and curl into a tight little ball against my chest literally protecting my heart.

They make me smile every day, and laugh and yell, and without them I would be terribly alone.  So in future when I hear someone talk about their pet as though it is their child, I will nod my head in understanding.  It is not so silly after all.  Maybe the crazy cat lady isn't so crazy.