Monday, April 23, 2012

Inbox: A Letter from A Reader

Editorial Note: We received the following email from a reader, and after asking her permission, the Myalgia Mommies would like to share it with you because she eloquently sums up what we were trying to say. This author is another Myalgia Mommy who is totally rocking it!

Blogging, no matter how innocuous it seems the topic may be, is bound to ruffle some feathers, right?  Someone is always bound to disagree. I hope that you can read this with an open mind. Knowing me, I'll probably be a bit blunt, but please know I'm not trying to be mean or offensive. And I just got your guard up, didn't I?  hehehee

I've had a (rare, but specialist verified many times over) dual diagnosis of Fibromyalgia and Chronic Fatigue Syndrome (among other things) since 1996, when I was just 20 years old. I got sick two weeks after I married my first husband (there's the trigger - huge mistake). I was one of the first in the country to receive Social Security Disability benefits for Chronic Fatigue Syndrome (though I have since asked that they discontinue those benefits, against medical recommendations... long story, and the benefits have stopped). I'm the mother to two boys, ages 5 1/2 and nearly 4. I've got multiple friends who are also mothers who deal with chronic pain as well, though I've never been one to seek out others like me. Well, at least not in the past 15 or so years. A former coworker told me about your blog and since it's local and relevant to me as someone with chronic illness, I checked it out. I was only there a moment when I read this: "Chronic pain sucks! And parenting through the chronic pain double sucks!"


I have to say that I find this not only marginally offensive, but also grossly inaccurate. I've run it by a few of my chronically ill friends and they felt the same prod from that statement. Are you honestly saying that having children has made your life WORSE?

If ANYTHING, having the love and energy of my children is motivational and healing. They bring comfort and unconditional love that fast becomes foreign to a PWC. They don't judge. They don't call you a hypochondriac.  Yes, they are demanding and they require a metric shit ton of work and drain already empty energy reserves, but ya know what? What they give in return is ANYTHING but suck.  

I understand that you've not been sick for very long (though I know it feels long to you), and maybe that's a big part of it. I still remember the newness of it. The complete destruction of everything I was and everything I could do, and how that was replaced with nothing but failure and pain and rage and madness and self-loathing. I remember losing every last one of my friends. I remember mourning all the things I used to be and the buzzing ball of energy I had always been. I even remember believing 'them' when they said it was all in my head, at least for a while. I remember wishing it away - willing myself well and fighting so hard, only to be knocked on my ass so hard that I ended up literally bedridden for months, even having to be carried to the bathroom. The bullshit we all have faced (and even after all these years, some of it still comes up) is serious, but the reality is that there ARE things that we have to change our view on not only for ourselves, but for every single person we come in contact with. The biggest one, to me, has been to appreciate every single thing - to find the positive in absolutely anything and everything. And the biggest of those positives is the very existence of my children. If I didn't have them, my ass WOULD stay in the bed each morning, as long as possible. And ya know, sometimes it does.  But not without them there to remind me that even though I'm hurting and can't be Her, I have immense value and I am completely loved. And to label that as "suck" just pisses me right the fuck off. I have a tendency to ramble, so I'm going to stop here. 

I hope you'll take a moment to rethink your view, or at the very least, your wording. You're essentially stabbing mothers and children with that statement.

Thanks for taking the time to read this. 

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