I Have No Pain Scale and Everything Hurts: Communicating Chronic Pain

Hello people of the internet! It’s been a while. I have had a lot of personal stuff happening over the last six months or so, as well as some (very exciting) professional things which I’m not ready to announce yet.

One more order of business before I move on with the post: I’m trying to learn how to use alt-text and image descriptions so that they’ll work in the most accessible way possible. If I’ve screwed something up you would be doing me a massive favor by letting me know.

I’ve recently started using tumblr again. The plan was to stay very low profile and only post about fandom and cute animals and sometimes personal stuff. This plan has been something of a failure so far, partly because much of the advocacy and activism in which I’m involved is personal, and partly because I’m just not that all that great at keeping a low profile (and I have a pretty low threshold for what I consider “low profile”).

Anyway, today I came across a pain chart that someone had posted. Here it is:

A pain chart which includes descriptions of experiences. Text says: 0, no pain, "I have no pain", followed by 1, minimal "my pain is hardly noticeable", 2, mild, "I have a low level of pain. I am aware of my pain only when I pay attention to it," 3, uncomfortable, "my pain bothers me but I can ignore it most of the time," 4, moderate, "I am constantly aware of my pain but I can continue most activities,", 5, distracting, "I think about my pain most of the time. I cannot do some of the activities I need to do each day because of my pain,", 6, distressing, "I think about my pain all of the time. I give up many activities because of my pain,", 7, unmanageable, "I am in pain all the time. It keeps me from doing most activities,", 8, intense, "my pain is so severe that it is hard to think of anything else. Talking and listening are difficult,", 9, severe, "My pain is all I can think about. I can barely talk or move because of the pain," and 10, unable to move, "I am in bed and can't move due to my pain. I need someone to take me to the emergency room to get help for my pain.
The lovely colorful version of this pain scale was created by tumblr user doodleloser, who seems to be a spoonie themselves.

Now, I really like this chart. I will probably print out a copy and bring it with me to doctors appointments. All that being said: There are still some pretty big flaws in this chart re: chronic pain.

(Obligatory disclaimer because this is the internet: chronic pain is not the same for everyone and my experiences and those of someone else with chronic pain won’t necessarily match up. There are obviously some people with chronic pain who found this chart extremely helpful (and so did I, I just think there are other factors that are necessary for it to be useful.)

Continue reading

Revelation of the Self: Confronting the Internalized Ableism of my Identity

There are things I have learned about myself, recently. Things that have been true for a very long time, but which it took time for me to process as a part of my identity.

Why does it take so long for me to connect my reality with its implication?

Perhaps it is simply another way in which my brain gets stuck.

But I think there are two other reasons. Both are a kind of internalized prejudice.

One has to do with social norms, with stereotypes and stigmatization and fear and contempt. If these traits are part of my identity, then I am Like Them, and They Are Different and They are Bad and I am Not Like Them.

The other is an internalization of the refusal to respect marginalized people’s self-definition and self determination. If Those People cannot define themselves, and I cannot define myself, then I certainly cannot define myself as One of Them.

Continue reading

Blogging Against Disablism Day: Do Not Deny Me

Trigger Warning: This post contains a very personal account of my experience with doctors and ableism which could be triggering. It also discusses gas-lighting and experiences similar to it.

Blogging Against Disablism Day, May 1st 2015

Image Description: The above image is a banner for Blogging Against Disablism Day, a 5×4 grid of pictures, in various colors, of the type used to represent people on signs. One has a cane, and one has a wheelchair. The image links to the Blogging Against Disablism Day page.

Recently, I was contacted about Blogging Against Disablism Day. I knew right away that I wanted to participate, but what to write about? Certainly I’ve had personal experiences with disablism, or ableism as it is sometimes called. But what specific type of ableism did I want to talk about? There are so many different ways that ableism presents, the institutionalized and the interpersonal, against the physical, the mental, and the developmental, the visible and the invisible. There is internalized ableism and external ableism. There is fear, pity, disbelief, simple hatred—but what should I talk about? What have my strongest, most memorable experiences been with?

The answer came fairly quickly. Doctors. After all, my experiences with doctors actually seem to have caused some of my disabilities—certainly exacerbated them. Most of my experiences with ableism have been with doctors. For three years, most of my experiences period were with doctors. Once I finished writing this, I realized it wasn’t just doctors, but denial. Denial of my experiences, my voice, my agency.

Continue reading

Speak English

When I was younger people would tell me to
speak English because I guess the words I used were
Toolongtoowrongtoo
Obsessiveimpressiveprecise and
Specific like
“iambic pentameter”
means what I mean when I say it and
nobody knows what
“trochaic tetrameter” means so stop
showing off
and isn’t it funny how sometimes I can’t
understand English at
all

and
I guess maybe I speak in
languages that don’t make sense like
ReferenceAllusionFictional
character on a tv show and
ReadingAboutShakespeareAt5in the
Morning and
AccidentallyPickedUpSlang because I
Forgot to stop trying to fit in

And sometimes
ColorTasteSoundNumber wave
When I mean
TouchFeelSmellSee think
or
FeelingWriggleScribbleWrithe
When I mean
SenseHappyBurstingItch

Like sometimes my mouth forgets how to make
words or my brain forgets to
send them and I end up
prrrrrrrring like a cat and
flapflapping like
my hands are loose lips sinking
ship after ship after ship

And sometimes people talk and the words fly
past my head like particles of dust that
flutter out of the way of my hands  and when I try to pin them down they
speed like
dreams.

And when I can talk in
sentences and understand
how people string together thoughts I guess they call those
“Good days”
Even though they change by
hours
But when I talk my brain gives me words like a
textbook and I guess I’m still doing it
wrong.

And when I was in high school I could list my symptoms like I was
WebMD but maybe
that’s because I spent three years with no one but
doctors
But fourteen year olds don’t talk like
medical reports so I guess I was
faking.

And sometimes when I talk I forget that I need
Tone
or my voice won’t move the way it needs to and my face won’t
curve and my throat won’t
laugh and they told me in linguistics that English wasn’t tonal but I don’t think
that’s true.

And people who are good in English class you’d think would be good
at English but I can
only read things half the time and sometimes
English stops making sense and I understand
sarcasm but only in theory and I understand
metaphor but only in books and I understand
people but only when I can map their arcs like
waves inside my head

And I spent my life mapping the English that they speak in
written down worlds  and still only grasp it sometimes
but the English that they speak in
life
eludes me.

Hypersensitive

Sometimes, everything gets loud like
the volume on the world is turned up past
eleven and I
wish that I could make the noises stop but they keep coming while I
try to crush my ears beneath my
hands to shut out noises every
taptaptap on the
keyboard
every
crinklecrackle of plastic while my mom unwraps her
candybar
every
crashclatterBANG of dishes  against
dishes but the
speakers in my brain are
broken, so I’m left
staring
at the place where a knob should be
but isn’t.

I am Hoping: Words Not to Say

“Hope for the best. Prepare for the worst.”

I can’t tell you how many times I’ve heard that.

I think I hate that phrase now.

That seems to be a go-to phrase for people when I try to explain why I am making the plans I am making, why I can’t just pretend that I will magically get better. Sometimes it is an attempt at understanding, sometimes a rebuke because they believe I am not “hoping for the best”. (What, then, am I hoping for? Do you think I want this? Do you think I enjoy the fact that I will be in pain for the rest of my life? Nevermind, you wouldn’t be the first.)

“The best.”

Well there’s one problem. They rarely seem to understand what “the best” is. They think that “the best” is that this will all go away, and I’ll be healthy and normal and I won’t use a cane anymore. They think the “best” I should be hoping for is being fixed.

And I will concede, I suppose, that anything can happen. A cure could be found. They could cure this and every other thing I have and I would be normal and healthy and maybe  happy.

And I don’t know what else.

I don’t know who I’d be, if I didn’t hurt.

I do want to stop hurting, I think. A cure would be…good, I think, at least for this. This particular ailment, which affects my nerves more then my thinking. (I wonder what that would be like? I almost dread the times I do not hurt, because they make me doubt myself. Moments of happiness in between bouts of pain are some of the worst moments I have.) But everything in my body is tied to everything else, and all of it comes back to my brain, and who would I be with a different brain?

But that’s all academic. Hypothetical philosophies that are generally irrelevant to my reality.

There isn’t a cure.

And this isn’t going away.

So what is the “best” that I hope for?

I want…

I want so many things. I do not hope for all of them.

I hope…

I hope that I learn how to live with this.

I hope that I get used to walking with my cane, because it frustrates me and angers me when it bangs my leg getting into the car, and I forget to bring it with me, but now that I am using it I can actually walk and I do not fall, I stand steadily on my feet and my legs do not disappear from under me and do you know what that is like, after two decades of feeling my ankles give way and my knees drop out?

I hope that I stop crying every day. I hope that I keep feeling things, though.

I hope that I learn to be content. If I learn to be content then I can be happy, I think.

I hope that I get to be happy. Not the happiness that comes in between the pain, when it leaves me for a little. That happiness is tainted with fear and hatred and self-doubt. Because I know it will not stay. Because I fear my mind is lying to me. Because I hate the people who made me afraid of that, and the people who made me hate myself, and I hate that I listened and I hate myself for not beating them.

No. No, not that happiness.

I hope that I get to be happy regardless of my pain, not because it is gone.

I hope that I learn what I am learning, to be happy with the things I have to be happy with, to be proud of the things I have to be proud of.

I hope I learn to live with this. That is what I hope.

That is the best that I hope for.

And I do hope for it. You do not need to tell me to hope for it, because I do, I do. You think because I am angry and in pain and grieving that I do not hope? Are you dissatisfied because my hope does not look like you want it to, placid smiles and inspiring strength? Am I not being strong enough for you?

I am so tired of being strong.

I am so tired of trying to hope.

I am so tired.

I have the rest of my life to hope. The rest of my life to try to be strong. This is mine to live with for the rest of my life, and not yours, and I do not want to hear that I am not hiding it well enough for you.

I am grieving. Let me grieve.