When You Make Your Life Public, Expect that Criticism Will Follow

There are many times I will think about something that bothers me regarding my health issues and feel this desperate need to write about it.  But as I’ve mentioned before, it can be challenging and frightening putting your life out here in the Internet world for people to judge and scrutinize.  But then I think about all of you – the loyal readers & friends I have made on this journey & it keeps me motivated to continue telling my story.

I receive many emails.  Most of them are encouraging & uplifting notes from readers who thank me for writing & sharing my story, fears & realities that they feel they cannot put into words.  But by me telling my story, they realize they’re not alone in this complicated world of chronic illness.  I then receive emails from those who are seeking medical advice, which I can’t give but I try to lead them in a direction where they can find help.  I wish I were an expert or physician & could take each one of these individuals under my wing but I can’t do that.   I enjoy reading both of these types of emails and receiving these keeps me motivated to continue with the website when I receive the remainder of the emails I’m about to discuss.

The third type of email I receive is what I consider “fear mail” and not really hate mail.  I call this type of email “fear mail” because the people who send me these emails rake me over the coals for how I post about my own experiences with CFS, Fibro & IC.  These emails are criticizing me for how I try to work part-time; how I try to continue striving for something better when, according to them, I shouldn’t be.  I’m allegedly making it hard for people with these illnesses to be taken seriously because of how I live or how I try to live despite my illnesses.  I have even been told that I will probably affect people’s Social Security rulings based on some of my posts.   Everyone with these illnesses are unique, we are all different and we all suffer to varying degrees.  We all have different personalities as well.  Some of us are just driven people and even sick, we are still driven to achieve whatever little we can & we fight like hell to get through each day.  I will not lie or downplay or exaggerate how I feel or how I don’t feel, however.  Part of my site is about MY experiences with chronic illness and these are my own experiences.

The last kind of emails I receive are the hate emails.  Fortunately, these are the emails I receive the least but we all know how much something hateful and hurtful sticks in our minds for a long time.  These are the emails that make me scratch my head and go, “HUH”? 

In one day earlier this week I was sent a nasty email and was then blocked by someone on Twitter in the CFS/Fibro community for posting about the Fighting Fatigue Fighting Back Challenge(awareness campaign).   Then I was reading where a fellow blogger was being harassed by supposedly loyal followers who are falsely accusing this person of excessive marketing of materials & trying to get rich off the backs of ill patients when it is obvious this person is not doing so (sorry – I will not mention any names!).  All of this combined prompted my post When Did the CFS & Fibro Community Become So Ungrateful?

Look – I’m not doing this for money, any type of fame or self-glorification.  My goal is & always has been to help myself & to help others deal with their illnesses by realizing their thoughts and feelings related to what they are going through is normal.  How many of us thought we were really crazy until we read about someone else’s experience & shared that same feeling, emotion or thought ourselves?

I think a lot of the anger being placed on us “little guys” in the Internet world is misplaced.  The CFS & Fibromyalgia community is always wanting three main things:  better research/funding, increased awareness & understanding.  These are all areas our big non-profit organizations are failing & patient advocacy has become the means of a lot of things getting done lately.  It is the big non-profits to where the CFS/FM community needs to be directing their anger.  For example, just recently the mess with the National Fibromyalgia Association that Selena has been keeping up on on her website at Oh My Aches & Pains & the controversy at the CFIDS Association can be found at these posts:

Bloggers & patients like myself are doing what we know how to do with little or no resources to try & accomplish where the big organizations have failed us.  So awareness campaigns like the Fighting Back Challenge where people can share their stories of surviving and thriving despite their limitations has nothing to do with marketing, money or self-promotion.  It’s not about me.  It’s about the illnesses & helping others.  That’s what it’s always been about and what it always will be about. 

There are all kinds of people in this world and all of the positive, wonderful examples of human beings I have met on this journey far outweighs the criticisms & judgments.  As patient advocates & bloggers for chronic illness, we have to be prepared for the price of making our lives public.  But I’m tough and if I can handle three chronic illnesses I can get through the rough patches of negativity & occasional unkindness of others. 

Thank you all for the last five years of wonderful support and kindness that many of you have shown and I’m looking forward to another five years with you all!

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  1. leorising says:

    Well, I had a very wise boss who once said, “If you’re not pissing off the assholes, you’re not doing your job properly.”

    There will always be people who become angry when their beliefs are threatened. Whether that belief is that all fibros/CFSers/ICers should stop working so as not to make the others look bad (LOLwhut?), or that you’re all self-aggrandizing and who do you think you are, anyway, it’s all BS. You are who you are, and you’re coping just like everyone else who has these funky syndromes: you’re doing it your way. Just exactly, precisely, unapologetically, as you wish to do it.

    The way you’re doing it is no more their business, than you telling them how to run their lives would be.

    Then there’s the ones who are just trolls, or are bitter, or just have too much time on their hands. Ignore, ignore, ignore! You don’t owe them the time of day, either. Easier to say than to do, sometimes, I know. Their raison d’etre is to be hurtful, and sometimes they hit the mark too accurately.

    Still, I hope I’ve given you some encouragement here, and that it helps you feel better. You’re doing good! You’re helping people! You’re being true to yourself!

    I haven’t participated in the Fighting Back Challenge, not because I hate the idea or whatever, but because, after a dozen years, I’m just not there anymore. My fighting-back time is over, and it’s time for me to give in gracefully, and concentrate on winning the smaller battles that improve my quality of life.

    I support the concept, though, and wish you the best of luck with it. Your Challenge would’ve benefited me at the time that I was still fighting back, I’m know. I’m sure there are many, many people who are encouraged by your efforts.

    Hang in there!

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