The following piece draws on the collective experiences of the women I have the pleasure of calling my hista-sistas in arms. As bold as we may be on the battlefield of health, matters of the heart are still the frontline.
It’s hard to accurately share the hell we endure with those who have never experienced it. At best we sound wildly melodramatic. At worst we sound terribly needy, attention hungry and truly sick in the head.
Or so we’re often told.
By those who claim to love us.
It’s hard not to see where they’re coming from.
Mast cells are found in every major organ system, and yet, often because of the dozens of symptoms that plague us, we’re accused of embracing the role of hapless victim a little too readily.
I wonder why it’s so hard for family members and lovers to understand that as mast cells proliferate, they dump their toxic cargo into our bloodstream, inducing anaphylaxis, messing with hormones and neurotransmitters, as well as causing maddening itching that at its worst made me want to rip my skin off?
I’m shocked that more of us don’t go completely off the rails, because honestly, I’ve felt I was going completely mad at times.
The persistent memory loss, frequent symptom flares and pathological anger is easy neither for those we love, nor for ourselves to comprehend, let alone deal with. As tired as we are of living this way, those we dump our toxic waste onto must feel a burden greater than ours, because they cannot take charge and treat it themselves, as they see fit.
The only thing worse than being a patient, is being the powerless patient’s powerless partner.
And impotence isn’t a good colour on a man. Our symptomology is an easy target for patience worn partners seeking to score a quick point, or simply shut us down so they can get some peace and quiet.
We’re accused of either forgetting things out of spite, or to control our environment, while our rage is blamed on the tides of our cycles rather than organic brain syndrome, as documented by the most respected researchers in the mast cell field .
We’re told to man up, stop bitching and get on with things. Our inability to engage with life, to pick up a sick child from their bed without needing to be propped up ourselves, becomes oppressive to say the least.
So what happens when those who committed to be the ones to lift us up to meet these seemingly herculean challenges are not who we thought them to be?
My psychotherapists and psychiatrists over the years struggled to come up with the answer to why I put myself, time and again, in the hands of those who appeared to derive a great deal of their strength from sucking mine dry.
While no one would call my childhood a happy one, I managed to scrape by without the abuse, violence, sexual assault or life altering trauma a great number of my mast cell tribe have suffered. Sure, by the age of 20 I had lost an alarming number of friends to cancer, drug abuse and car accidents, but still, nothing on which the shrinks could pin my unbelievable lack of self-esteem and PTSD-like fear of the world around me.
Just the other night, as I lay in bed, tossing and turning, a light bulb finally switched on. Lifelong illness is my psychic scar. Carried since childhood, the indelible memory of laying my head on my father’s bedside as he lay dying of cancer at 42, has haunted me, lending a megaphone to every ailment, every twinge in my body.
For 30 years I remained convinced of my impending diagnosis with an incurable disease. Honestly though, I needn’t have fretted – how many illnesses are truly curable? We’re all dying in some way, and that’s ok with me now (read more here – I choose life).
My perceived, and then confirmed illness became my safety blanket. More a jealous lover than simply the product of defective genes, my svengali-like condition dictated the terms of my movements, thoughts and development as a human being. I was a prisoner of my own mind.
No wonder then I was primed for those who sought to further unravel the loose ends of my self-esteem. I was easy pickin’s for troubled, seemingly loving mates, friends and mentors who sought nothing less than my complete submission to their terms. At the time they did not yet know that I was already a slave to a far more fearsome taskmaster, but they soon learned, and discord reigned free and hard in our reality.
I now believe that in the same way that psychopaths have been shown to be able to identify victims of crime or previous violence , my unconscious behaviours sent off easy prey signals to the vultures circling my airspace.
I imagine it would be hard for most men to pass up the opportunity not to dominate us. This illness tends to bring out either the victim or the tiger in many of us. Or both, as events, some beyond our control, and others seemingly so, threaten to overcome common sense and the will to thrive.
Sadly we’re fooling ourselves if we don’t understand that these toxic relationships are causing illness, and further instability of our body’s systems, in addition to causing stress hormone induced epigenetic changes that leave us open to more serious illnesses than what we’re dealing with now (hard to believe right?). For more please read Lisa Rankin’s Mind Over Medicine.
I also recently spoke about the role of stress as a mast cell trigger with mast cell specialist Dr Castells and have often referenced NIH funded Dr Theoharides’ research on stress as a mast cell trigger .
Luckily, women have an inbuilt psychopath detector  – you know that feeling you get, a chill runs down your spine, or that sudden psychological punch to the stomach, or just the terrifying feeling you’re in the presence of darkness? It may be a curl of the lip as he denies your feelings, a smirk as he assigns all blame on you, or a flash of anger behind a cunning smile. If you’re open to the experience, it can be set off by a lot less than a psychopath, maybe your run of the mill verbal abuser or mental controller (see Patricia Evans’ books for more).
Sickness is frightening, and it may be tempting to stay in a psychologically damaging relationship because the alternative is just too horrific to bear.
But heed my words – pay attention to that feeling. Run like the wind and don’t ever look back. Don’t let anyone logic or guilt you out of it, especially you.
Dig deep to find your strength. Remember who you were before the darkness. Believe me, the fire is always burning within.
No one, no matter how hard they try, can take it away from you.
Be free my loves.
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 Jon Ronson, The Psychopath Test