Om Nom Nom Diagnosis

fuckthedisabled:

my chronic illness bill of rights

billierain:

I HAVE THE RIGHT…

• to the full range of emotional responses to my experiences—from self-pity to gratitude and everything in between.
• to seek out information and advice from any source i can find.
• to follow or disregard any advice or recommendations i receive from strangers, friends and family, fellow sickos, books, or health practitioners.
• to seek relief or a cure, or not, as i see fit.
• to healthcare, including face-to-face visits with allopathic and alternative practitioners, prescriptions and supplements, assistive devices, fitness classes, and access to the information i need to make informed decisions about the potential risks and benefits of whatever i pursue.
• to any accommodations i need in order to have the option of participation in the public life of my community and the larger society.
• to define my level of availability to others based on how i feel and my assessment of my needs.
• to make plans and commitments with the understanding that i may be too sick to follow through on them.
• to address conflicts and disagreements in ways that honor the delicate relationship between stress and my well-being.
• to not be compared, favorably or unfavorably, with others who share any or all of my diagnoses.
• not to have to answer the question, “how are you?”
• to be appreciated for the contributions i make to my communities, even just by my presence.
• to be valued for who i am, not what i do.

written by me, billie rain

original post

Psychiatrist:  ”Now, don’t take this medication in the evening.”

[Image:  Dr. Wilson from the TV Show “House.”  He is rolling his eyes.  The text reads “Are you fucking kidding me.”]

I didn’t think I would ever feel this much pain over an extended period of time.  I think I need to go to the doctor sometime this week.  This is not ok.

So my MRI of my head and neck came back clean.  Ok, cool.

Then she said that Fibromyalgia is a fake diagnosis made by lazy doctors.

Then she said that all of my pain was caused by a trapped nerve in my spine.  There is no trapped nerve in my spine.  We ruled that out in 2010 with an X-Ray and again in 2011 with an MRI.

She wouldn’t listen to anything I had to say about my degrading memory, my balance issues, my temperature intolerance, my lack of reflexes, or my fine motor skills being not quite right.

I wanted to say something witty and smart like this:

But instead I just started crying and I went home crying and didn’t stop crying for another hour.

lalaincognito:

When I first made this Tumblr, I thought to myself, “This is where I’m just gonna let it all out. This is where I’m going to publish every depressing thought, every complaint, & every single little thing I find wrong about my life or just life in general.” I figured, “I have a disability. I have a million different kinds of issues to vent out on here.”

But then I explored the Tumblr blogs of others with disabilities.

First, I skimmed.

Then, I read.

Next, I frowned.

And then, I nearly broke into tears.

These people need some inspiration.

I’ve always refused to be the “typical” this.. & “typical” that.. So, on here, I refuse to be the typical handicapped teenager full of depression because she holds on to the things she can’t have & the things she can’t do.

On here, I’m going to give people with limits something to smile about.

Sure, maybe I’ll have a bad day or some terribly awkward & humiliating exchange among a friend that I might want to let out on my Tumblr.

But I will not allow those posts to overpower the positive ones.

I refuse.

I don’t want your inspiration, thanks.  Saying “These people need some inspiration” makes me feel like crap.  Sure, post powerful and awesome stuff.  I don’t care if you do.  But don’t assume that other people “need” inspiration.

Also, this?

I’ve always refused to be the “typical” this.. & “typical” that.. So, on here, I refuse to be the typical handicapped teenager full of depression because she holds on to the things she can’t have & the things she can’t do.

This right here makes me feel guilty for being “full of depression.”  It makes you sound like you’re better than others who are struggling.

Look, you probably meant well, but it didn’t come off that way.  It comes off as condescending and better-than-you.