Saints & Sinners

The Internet is both a wonderful and a scary place.  It’s full of genuine, honest, lovely people and absolute nut cases.  Saints and Sinners.  The altruistic and the house robber.  It’s easy to tell them apart……isn’t it?

There’s apparently been a big hoo ha online this past week or so in the M.E. world.  I deliberately haven’t followed it because I would find it stressful and I don’t need stress.  I see comments made by my friends on the subject, however, and they are firmly in one camp or the other.  They’ve decided who is the villain and who is the victim, often from reading a couple of lines written by someone they don’t even know, who’s based their judgement on something they’ve read that was written by someone they don’t know, who’s based their judgement on having once met one of the individuals involved and “really liking them”.

As my longer-standing readers will know I fell out with a friend a couple of years ago.  She said something hurtful in an email and I emailed back, angry and hurt.  She then put my email on her Facebook page for 200 strangers to read, who all thought I was the Devil.  Several of our joint friends ostracized me.  She played the victim and I was “evil” apparently.

Of course these people had no idea that my Mum is terminally ill, my Dad probably has Dementia and I’m their sole carer despite needing care myself.  They had no idea that at the time I was having anaphylaxis several times a day and unable to find out why.  They had no idea I had just discovered I had Ehlers-Danlos Syndrome and was reeling from the shock and implications.  Some of them knew I had M.E. but most did not.  They had no idea one of my childhood friends had just hung himself in his garage and I’d just lost my Aunt to cancer.  In short, they knew nothing about my situation or the fact I was qualified to speak every word in the email I’d sent to this former friend.  As far as they were concerned I had no idea what living with chronic illness was like and had no idea what grief was like.

We are very quick to judge situations without really knowing the facts.  This person had shared my email which, out of context, must have appeared not very nice (though in my defence it was polite, no swearing, no name calling, just stating some home truths which I stick to to this day as they were all correct).  Without knowing why I’d sent it, not knowing anything about my situation or my 16 year relationship with this person I was judged and found sadly lacking.  Not a word was said to the person that it’s actually illegal to put someone’s private letters online without their permission – that was OK because…..well…….I’m not sure how they justified that was OK!

When people blog, particularly about their private lives, our readers feel like they know us.  Only of course they don’t.  What they see is a snap-shot of a complex and full life and in my case a nearly 50 year history that makes me the person I am.  I blog to say all the things I don’t say in ‘real’ life.  My blog is an outlet, often for negative issues that I wouldn’t dream of saying in my ‘real’ life.   So, often, all my readers see is the negative.  Which gives a very skewed view.

I wrote a blog post about shouting at my Mum one day last year, but I haven’t blogged about the 1,825 days I have been a loving, kind, caring, compassionate, forgiving, understanding and exceptional daughter who always puts my Mum’s needs before my own.  I talked about dreading Mother’s Day this year, but haven’t talked about the fact I booked a table, took her out, made sure she was seated and happy, bought her 2 presents and made a personalized card, paid for the meal, took her to a new store afterwards which had opened, helped her out of the car and into the house, sat for another hour and did the Crossword with her and tried to make sure she had a lovely day even though I was on day two of a migraine, had just started my period and had horrible cramps, and had only had three hours sleep due to horrendous stabbing back pain which had me in tears at 4am.  It’s easy, isn’t it, to judge me for the one day I shouted and not the other 1,825 days I didn’t.

It’s easy to be online and anonymous and free to judge people and situations, forgetting there are human beings with emotions on the other end of our wrath.  We shut the laptop lid all self-satisfied and self-important and forget we may just have decimated another human being’s life and done it publicly for the world to see.  My own thoughts are that unless I have something kind or constructive to say I don’t say anything at all (unless someone has been a dick to me first, then the gloves are off cos I’m no doormat).  I’m in no position to judge someone else’s life – I’ve fucked up my own enough to not trust my own advice, let alone try and tell someone else how to live.

I don’t know who’s right or who’s wrong in the recent M.E. hoo ha and I’m not about to make a decision based on what I read online.  Whoever is the victim or the villain the reaction of some sections of the ME population has done nothing to further the fight for recognition and treatment of the disease and everything to discredit the patient population and re-enforce the perception that we’re all out of control and a bit bonkers.  I wish it would stop.




5 thoughts on “Saints & Sinners

  1. Karen, The Walking Allergy

    Jak, if you were a truely horrible person, there’s no way you would write about shouting at your Mum. Merely because it upset you, bothered you, and was noteable, you prove that it is not who you are, and that you are under a mountain of stress and strain, trying to function with an uncooperative body. When I read it, I gasped. My thought was “Oh, she must have felt SO awful about that!” If you were truely lazy, or mean, or evil, you wouldn’t even have noticed that you shouted. It’s okay to be angry and shout every once in a while. Good lord- we have this idea that everybody should be happy all the time- in persuing that, we actually become more depressed and judgemental. Because being ‘happy’ 24/7 is impossible. And it would be SO boooorrring…..




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