ashbet: (Abigor)
Originally posted by [livejournal.com profile] shinga here.

So I know there are people talking "behind my back" (probably not in a purposefully mean way, just talking) about the fact that I post a lot or "too much" or whatever on FB.

Well, to those people...

Deal with it.

I don't have a workplace. I don't have the option to drive and go out during the day. I don't have SOCIALIZATION. If friends can come over, they do, but my friends have busy lives and it's a rarity. I have Will but he works all day and has his own social obligations outside the house.

I do not talk to anyone, all day. Facebook is my way to keep in contact with friends, with the world. It's one of the only ways I can share my life with them and vice versa.

So get the fuck over it and unfollow me if my frequent posts are so annoying to you... if you find me "pathetic" for being too disabled to find some other social outlet besides social media.

I won't miss you.


* * *



I shared [livejournal.com profile] shinga's post on FB (she had originally written on FB, but was generously willing to post it as a public LJ entry to make it easier to reblog), and one of my friends said (very kindly!) that I didn't need to justify or defend, and that I had the right to speak my truth and have my friends stick with me.

I started to write a response, and, well . . . it wound up being fairly long and passionate.

I'm sharing it here, and making it public, because it means so much to have friends who *do* listen, and who will stand up for me when others use silencing tactics to try and shut me up.

* * *

Just to be clear, I wasn't feeling defensive, I was sharing the words of a friend because they resonated with me.

This IS my life that I talk about, here and on LJ. It's not "dwelling on negativity" or "TMI" or "identifying with my illness" to say, hey, I deal with a lot of medical stuff in my day-to-day existence.

And being disabled does kinda suck, even before you add the terrifying financial uncertainties and realities, the lack of human dignity when dealing with the leaky mesh of the supposed social safety net, and the dependence that the system creates on getting insurance through an able-bodied partner, rather than being ALLOWED to purchase it on our own.

It's not my WHOLE life -- there's a lot more to me than EDS -- but I don't ever get a single day's vacation from living with this disease, and I don't have the ability to just overpower it with the strength of my will, or else I'd have done it by now.

Every day, I overcome.

As I was just saying to a friend who is dealing with a life-altering diagnosis and a terrifying prognosis -- sometimes, I'm riding the tiger. And sometimes the tiger is riding me.

But I don't stop fighting to get on top, I do my best not to surrender to despair (and if I do fall into that pit, I keep clawing my way out again.) I've lived with this long enough, and made those changes, and forced myself to accept repeated "new realities" that are different from my hopes and aspirations . . . because I know that I can get back on top of that fucking tiger.

And when I'm riding it, instead of it riding me, I have the capacity to find joy in my life.

I can love fiercely, I can stay loyal and faithful to my friends and loved ones, I can do amazing things, even if they're different from what I accomplished before.

They're not less. *I'm* not less.

And that's how I keep fighting, when the tiger is riding me -- I know it's a cycle. And I can get on top again.

But I need friends who can love and respect me *while* I talk about these things, *while* I grieve for my losses, as well as celebrating my triumphs and the things and people that bring me joy.

I can still help people. Tonight, I started work on helping a friend with no insurance to get access to the meds she needs.

It's something I know how to do. It's something I can give.

And that's the kind of thing that I want and need the space to share, too.

*YOU GUYS* are fucking awesome. The friends who stayed with me, and the friends who joined me along this journey -- you are literal lifesavers, and I love you all.

But I've also heard all those hurtful things that Amanda talks about, sometimes from people I thought would understand, people who I'd been there for.

Having this space to express myself means so much to me -- but it's important for everyone to know that *every* person who opens up about their disability or pain or chronic illness -- we have all had people try to silence us, because our stories make some people in our lives uncomfortable.

Sometimes, it's someone as close and trusted as a partner, a parent, a child, a best friend.

So -- when you listen to me, and you still care, and you don't disengage or bitch behind my back about how I won't shut up about my boring struggle with disability -- you're counteracting those silencers, healing those betrayals.

You're making me (and everyone else fighting this same battle) remember that we didn't lose our humanity by acquiring (or being born with) an illness or disability.

You matter, so very much.

Thank you. <3
ashbet: (Abigor)
FYI for headache/migraine/facial-pain patients -- Red Lawhern has been a tireless advocate for people with trigeminal neuralgia, and the show will likely apply to others with rare diseases and pain disorders, who are often abused by the medical system:

Dear friends,
I have been invited to interview online with Dr. Peter Breggin, MD, from 4-5 pm eastern time on August 6th. Dr. Breggin is a prominent critic of mainstream psychiatry and the excesses and dangers of psycho-active drugs. The hour will revolve around my September 2013 editorial published on Mad in America and re-published on the Rxisk blog of Dr. David Healy, MD. "It's NOT All In Your Head" [http://www.madinamerica.com/2013/10/head/] speaks to the abuses suffered by chronic pain patients and others with rare medical disorders who have been written off as "head cases" by medical doctors who have failed to understand, diagnose, or treat their real medical disorders.
The program will be available live via Progressive Radio Network on the internet at: http://www.prn.fm/ . It will not be broadcast by conventional radio.
Following the program, it will also be archived here as well as on prn.fm : http://drpeterbregginshow.podbean.com/
All are welcome
Sincerely,
Red Lawhern, Ph.D.


* * * An excerpt from the linked Mad in America article * * *

In the volunteer work that I do with pain patients these days, I’ve taken time to ask them about their experiences with medical doctors who referred them for mental health evaluation for symptoms that the doctor couldn’t put a disease name to. In an alarming number of cases, females among this population are written off as “hysterical” — a common rejection or shunning that is quite well established as an issue in both lay and professional literature. The same kinds of referral also occur with men, but significantly less often. For many patients, a better course of treatment emerges later with a different doctor who finally recognizes what is going on after several others have missed the diagnosis. For some, the light never appears at the end of the tunnel. Suicide is a real risk among those who have been told “it’s all in your head.”

The term “hysteria” casts a long shadow over issues of chronic pain. The contemporary roots of the term go back to a French neurologist named Charcot and to one of his students, Sigmund Freud. In my studied opinion, Freud’s theory of “female hysteria” is one of the most widely accepted mythologies ever invented out of thin air and academic surmise. Professionals who regard themselves as learned have invented an entire field of psychological practice around the term. We call that field psychosomatic medicine, and politely ignore the reality that its practitioners are rarely able to help their patients get better in any consistent way.


http://www.madinamerica.com/2013/10/head/

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