Things I Wish Healthy People Understood About Chronic Illness

I’ve been working on a similar post myself about the costs of living with a chronic illness, so I figured that I would reblog this one in the meantime 🙂

fit, fat, and feminist

There are a lot of lists of this nature on the internet, but I want to do my own.

The Cost

This is one of the main things that inspired me to want to make this post. Being chronically ill is expensive. Between the doctor appointments, regular medical tests, and prescription medications, plus the non-prescriptions medications. I’m not even talking here about the hidden costs like missing work because of being ill.

It’s not just how much it costs, but also the consistency of it. This comes up a lot for me in discussions with people about certain medical costs, and I realize that we look at things in a very fundamentally different way based on our health backgrounds. I find this with family a lot, who know about my chronic illnesses and medical expenses, and yet they still often seem to have trouble understanding that I know these costs will…

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Why “I thought I was going crazy” is crummy

My cats like vacation
Image description: My cats Bela (orange tabby) & Serenity (grey tabby) laying together on a grey jacket with a grey & peach couch & my wheelchair in the background.

I was listening to a podcast interview with Julie Flygare, a person with narcolepsy who blogs at REM Runner, wrote a memoir called Wide Awake & Dreaming: A Memoir of Narcolepsy, and runs a nonprofit called Project Sleep. I think she’s pretty neat (and she’s really one of the biggest narcolepsy activists/advocates), but I was struck by something she said that raised my hackles…something that I hear often in spaces for sick and disabled folks. The gist is this:

I thought I was going crazy, but I found out that I have [xyz illness/disorder/syndrome/impairment]!

I hear a similar thing when talking with folks with physical disabilities like paralysis:

Just because I use a wheelchair doesn’t mean I’m dumb/mentally impaired/cognitively disabled/an idiot (insert other ableist terms…many times the R word)

Think about this for a second. I understand the intent behind the first paraphrase, especially as a woman. Many times women who try to address a health concern with a doctor are told that it’s “all in their head,” they’re “hysterical,” and the symptom(s) aren’t real. This happens a lot with fibromyalgia and chronic fatigue syndrome (also called myalgic encephalomyelitis). People want to be believed, especially by their doctors. It makes sense. We want our realities to be recognized and validated, especially when it feels like our bodies are attacking us out of the blue.

The problem, however, is that these words end up making mental health concerns to be “not real” and that is totally problematic. For instance, ask anyone who has panic attacks if what they’re going through is real. This notion of what is real and what isn’t is really sticky. A person who is having a panic attack is having a real reaction to a stimulus, whether internally (maybe life has been stressful & they thought about something that’s causing them great anxiety) or external (maybe it’s related to a phobia and it’s hard for someone else to recognize the trigger).  For folks with more stigmatized psychiatric symptoms like hallucinations, delusions, mania, suicidal ideation, all this discourse does is create more stigma (and further hurt a person’s overall health as stigma is related to a slew of negative biomarkers like high blood pressure, high blood glucose, inflammatory markers, etc).

This “crazy talk” needs to stop in other places too (Fit is a Feminist Issue just did a blog post about athletic events or pursuits being called crazy, and there are a bunch of mental health advocates & psychiatric survivors trying to get people to stop calling things like the weather “schizophrenic” and “bipolar”). People’s lived experiences, diagnoses, and identities shouldn’t be used as metaphors for crappy things!

Spoon Theory: What it is and what it isn’t

fit, fat, and feminist

This started as a facebook post on this article that showed up on my feed:
 
I’m not sure how I feel about the way spoon theory has been expanded to others sorts of disabilities- as I’ve seen the types of spoons used with. It does strike me in some sense as being a very different issue that distorts the language we use when people apply the same language of spoons to things that are actually quite different, but then at the same time, I kind of feel like if it helps explain disability maybe expanding the meaning helps….
I am torn though lol, because as soon as I type that I think “but sometimes it obfuscates the issue”.
 
But that issue aside… I really could relate so much to the author’s annoyance at a friend who found that sex is…

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NWSA 2016 Fat Studies Interest Group CFP

Please repost widely!

Call For Proposals

National Women’s Studies Association 2016
Fat Studies Interest Group
November 10-13th in Montréal, Quebec
Papers on any topic at the intersection of women’s studies/ feminism/ womanism/ gender/ sexuality and fat studies will be considered. This year’s conference theme is: Decoloniality. Your submission should also fall under one of the following sub-themes for NWSA 2016:

• Unsettling Settler Logics

• Movements and Migrations
• Bodies and Biopolitics
• Borders and Be/longings
• World-Making and Resistant Imaginaries
NWSA has detailed descriptions of the subthemes under the full CFP and can be found at: http://www.nwsa.org/Files/2016/2016.NWSA.CFP.pdf

While this is an open call, topic suggestions include, but are not limited to:

• Transnational Fat Bodies (immigration, globalization)

• Fatness & Institutions
• Fat & Containment
• Fat Feminist Vulnerability

• Fat Masculinities
• Fat Sexualities (including asexuality, hypersexuality, deviant sexualities)

• Defining and Refining Fat Studies
• Women of Color and Fatness/Body Size

• Fat Feminist Research Methods (including role of the researcher body)

• Fat Activism & Feminism If you are interested in being a part of the 2016 Fat Studies panels at NWSA, please send the following info by Wednesday, February 15, 2016 to NWSA Fat Studies Interest Group. CC BOTH Co-Chairs Katie Manthey and Candice Casas: (Katie.manthey@salem.edu and cdbuss@uncg.edu). Please make sure one of us confirms receipt of your submission. Your submission should include your:

*Name, Institutional Affiliation, Snail Mail, Email, Phone.

*NWSA Theme your paper fits under (and fat studies topic area/s if yours fits any of the above).
*Title for your talk
*A one-page, double-spaced abstract in which you lay out your topic AND its relevance to this session.
*a 100 word truncated abstract (NWSA requirement). *rationale for A/V equipment, if needed
Each person will speak for around 15 minutes, and we will leave time for Q&A. In order to present with your name in the program, you must become a member of NWSA in addition to registering for the conference by NWSA’s summer 2016 deadline.

_____________________________

If you submit a fat studies related paper or panel, you can tag it with the keyword ‘fat feminisms,’ and likewise search the program for ‘fat feminisms’ to find relevant panels. If you submit a paper or panel on your own, we encourage you to use this keyword if your paper or panel fits the bill. We thank NWSA for adding a keyword that helps conference attendees locate fat studies panels.

Blind & visually impaired gamers!

I found this Kickstarter that’s making Braille polyhedrals (dice with various numbers of sides). The creator is trying to get data from blind & visually impaired gamers so he can create products that are even more accessible (for example, one of the pledge levels includes a tactile battle map for minis).

Here’s the information from the update:

If you are blind(or VI) I would love it if you filled this out and e-mailed it back to me at Richard@64ouncegames.com. These are just possible jumping off points though, I don’t need it to strictly follow the interview.

  • How long have you role played?
  • What are your favorite systems? Do you have some preferred classes or archetypes?
  • What frustrates you the most about being a blind role player?
  • What has worked well for you?
  • Are certain digital files better than others?
  • What companies have made an extra effort for accessibility? Which companies have been horror stories so far and we need to help be more inclusive?
  • If you had one thing that you wish that people understood about being a blind role player what is it?

Unintended blog hiatus- Sorry!

I apologize for the unintended blog hiatus. It’s been a rough semester (I’m pretty sure I say that every semester though). I’ve been trying to get to the next stage of my doctoral education (comprehensive exams, aka “comps”) while taking courses that I don’t technically need for my plan of study but need to maintain my student employment.

The other reason that has kept me from posting is me trying to think of a URL for this blog that encompasses everything that I talk about (and whether or not this would include the product reviews that I have lined up). I still haven’t come up with the best URL yet (I’ve pondered something like http://www.gimpkinesiologist.com and other things along these lines to reflect my scholarly work…I’m up for suggestions).

With these “thinky thoughts” (to hijack a phrase that I picked up from the author Tamora PIerce), I wanted to show off something I got for my birthday. I decided to make a public Amazon wishlist for my friends to be able to see what kind of things I wanted, needed, or would be really helpful. I tried to make a good mix for people to pick from, including a book about writing a journal article in 12 weeks that a non-academic friend got me, Dragon Age and Shadowrun novels (two of my favorite geeky worlds), and a gaming keyboard to help my wonky wrists. I also put a ginormous body pillow on there called a Comfort-U Total Body Pillow….which a friend of mine got for me because she knows my constant struggle with what I call “painsomnia.”

This. Thing. Is. Amazing. Seriously. Because it’s essentially the size of two body pillows attached together on one end making a large U shape, it supports both the front and the back of the body. I tend to cross both ends underneath my knees to support my pelvic alignment, plus the fact that it’s cradling both sides of me means my spine stays pretty well aligned (which is really impressive with my fall allergies & sneezes….sneezing hurts something fierce near my cyborg bits, even though I’m close to 3 years post-op).

A pale person wearing a grey fleece camoflage hat and a dark sweatshirt with her head on a white pillow that curves from the front to the back of her
A tired & cold selfie while lying in bed with the Comfort U pillow

I seriously recommend this pillow for people with pain or who have alignment issues while sleeping. It’s also been great for giving my snuggly cat a place to lie with me in bed without him lying somewhere painful. I would imagine that this pillow could also be amazing for pregnant people or for people that are breastfeeding. It’s not a cheap pillow, but it’s definitely helped me out.

Links to specific Amazon products are through my affiliate link. Not a paid review.

1 Tactic That Will Help You Grow Your Following: Meet and Greet

I’m taking part in this reblog event to try to give the Adventures of a Part Time Wheeler blog a more diverse readership! Share the love & l’shana tovah 🙂

Dream Big, Dream Often

imagesWhat day is it??!!  Meet and Greet Day!

Ok so here are the rules:

  1. Leave a link to your page or post in the comments of this post.
  2. Reblog this post.  It helps you, it helps me, it helps everyone!  So don’t be selfish, hit the reblog button.
  3. Edit your reblog post and add tags (i.e. reblogging, reblog, meet n greet, link party, etc.), it helps, trust me on this one.
  4. Share this post on social media.  Many of my non-blogger friends love that I put the Meet n Greet on Facebook and Twitter because they find new bloggers to follow.  This helps also, trust me.
  5. And if you leave a link and don’t follow me, how about ya show ole Danny some love?

Now that all the rules have been clearly explained get out there and meet n greet your butts off!

The Reblog post will publish at…

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