Tuesday, September 29, 2015

Faking it...

One of the most cruel aspects to having dysautonomia is being accused of faking it, from the medical community to even your own family and friends.  Suffering from such debilitating illness is hard enough; being accused of faking it increases suffering ten-fold.  And story after story after story can be found online and in the news.  Dysautonomia is an umbrella label, if you will, for Postural Orthostatic Tachycardia Syndrome, Neurocardiogenic Syncope, and Multiple System Atrophe.  Often, sufferers have multiple diagnosis, as well as other co-morbid conditions, especially autoimmune ones.  All three are marked by dysfunction of the auto-immune system, hence the word dysautonomia.

Because our bodies are all individualistic and how our nervous system malfunctions can vary from moment to moment, much less day to day, dysautonomia will not look the same, feel the same, be the same experience in every patient.  However, there are many, many, many symptoms in common and hall-mark signs.

I do believe that the experience that nearly everyone with dysautonomia has in common is disbelief ... is being accused of faking it, of having psychosomatic symptoms, of trying to get attention.  Here is the sad, but almost stereotypical response one young woman had to go through before finally being diagnosed:  Woman, 21, with debilitating chronic illness that causes 'never-ending nausea' says doctors refused to diagnose her - and even suggested she was 'faking' her symptoms.  It even happens to young children.  SIGH.

For me, this is a constant problem with seeking medical care, and one that frustrates me to no end, hearing over and over and over about "stress" or "emotions" when I am have a diagnosis and documented test results demonstrating a malfunction of my autonomic system.  For example, my first appointment with the Internal Medicine Specialist, I was so nauseous that I did not think that I would be able to go.  I told her staff and her that I was violently ill.  Yet when I went to my second appointment, the doctor went on and on and on about how much more "chipper" I was, more positive about life when I was there as opposed to my first visit.  Because I am soooooo very slow on the uptake these days, I did not remember just how ill I was the first time.  I was ILL, I was not lacking in positivity or "chipper's."  SIGH.

However, the deepest wound, that continues to both hurt and plague me, is the lengths that one person went to in order to convince others that I was faking it.  Five years ago, just as I was finally diagnosed with dysautonomia, when I had been fainting for years, seeing doctor after doctor, including several cardiologists, a pastor whom I knew and visited took it upon himself to not only accuse me of faking it, but going so far as to email other pastors in the LCMS in the process, declaring me to be faking it in order to gain sympathy and to manipulate others.  He believed that I had Munchausen Syndrome (making oneself ill in order gain attention from medical personnel and have unnecessary tests and procedures and even surgeries) and Borderline Personality Disorder, among other things.  He is not a physician nor a psychiatrist to proffer such diagnoses.  It was a brutal betrayal that, unfortunately, has followed me ever since.    Apparently, it is easier to believe the lies of someone who is not qualified to make the assertions he did than to believe the truth.  Or to believe my diagnosis. 

Or my suffering.

Not a single one of the other pastors came to my defense or sought to offer comfort after such a scathing personal attack.  The pastor who made the claims asserted that everything he did was in my best interest.  I have learned in counseling that no one does everything for the good and that absolute statements such as that are red flags.  Nonetheless, I remain at a loss at how accusing someone of such a thing and bruiting it about to others would be helpful.  My reputation was most thoroughly trashed.

Given that I have also heard from my family about being a "hypochondriac," such doubts assail me ... about everything.  

Standing still is the single hardest act for me, physically.  The longer I stand, the less I am engaged with whatever is going on around me, because my focus narrows to the quivering in my legs and buttock muscles, the racing of my heart, and the weakness creeping over me.  To this day, I still take far, far, far too long to sit on the floor if there is nowhere else to rest.  But I am getting better at doing so.  

You could say that that internal battle is an invisible aspect of my chronic illness.  And that would be true.  But I believe the worst invisible aspect are the wounds of having my suffering disbelieved.  I cringe and even weep when I read the stories of others who bear the same wounds, who battle the same cruel insensitivity, knowing how profoundly it affects one personally and what a barrier it can be to getting proper medical care and community support.  

To be fair, some of that cruelty stems from a lack of understanding and education.  By that I mean not a lack of listening to the ill person, but actually researching dysautonomia so as to become familiar with the hallmarks of life with chronic illness in order to recognize them when friends and family speak of them.  But few, at least in my life, have done this.  It still staggers me that my new counselor already has, already is trying to help me adjust to life with chronic illness, as well as the wounds of child abuse.

I think ... I think I am in shock because she is not telling me that I should already be over it ... over the loss, over the change in my circumstances. 

Anyway, that is my take on the struggle of invisible illness:  Having to bear the wounds of your suffering  disbelieved, of being accused of faking it.  I mean, Who? Who in the world would chose this life???

Tonight, my leg gave way.  That is actually something that started before I was diagnosed with multiple sclerosis, back in the mid 1990s.  It is as if my leg, or sometimes just my knee, disappears.  I was walking, for me, somewhat quickly down the hallway, trying to get to the bathroom.  My leg gave way.  I fell to the ground, hitting my head first against the wall and then the floor, landing very hard on my left hip.

I was stunned.
I messed myself.
I raged against my body.

All I could do is to lay there and wait.  Wait for dizziness in my head to subside.  Wait for the pain in my body to ease.  Wait for my leg to reappear.  Wait for the fortitude to gather up the shards of my self and gird my loins enough to face the reality of my life and to address the mess.

I wasn't going to write what I really wanted to say about invisible illness until the fall.  No one was here to see.  No one was here to help.  I could, as usual, just pretend that that is not who I am, the person who had to deal with bodily messes.  But I do not want to  ...  pretend.  And I do not want to remain silent about what is, to me, the worst aspect of invisible illness.

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