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@leftnotabled
I haven't posted in a long them. I'm really bad at posting on here and on my chronic illness insta. Sometimes it's relieving and community building to talk about it online and sometimes it just makes you feel worse. I'll try to post more.
My placard arrived today! No more do I have to decide if it’s more important to go to the grocery store to get food or if walking from my car to the grocery store will make my flare last days longer! No more will I have to ask to be dropped off at the curb!
If you asked me what I thought one of the most exciting moments would be of the next 3 years of my life when graduating from college I definitely wouldn't have said getting a disability placard for my car. I probably would have said something about meeting a sexy man who was also into monogamous relationships, having health insurance and a roommate I could con into doing more of the cleaning than me.
But, now that the day has arrived I am so so so excited. I love it when my needs are met.
My pain levels
I’m actually okay. I mean I can still feel the pain, but I can deal with this.
Alright I’m starting to get uncomfortable.
Yikes.
Bury me.
The emerging field of disability studies defines disability not as an individual defect but as the product of social injustice, one that requires not the cure or elimination of the defective person but significant changes in the social and built environment.
Tobin Siebers in Disability Theory (2008)
I thought I would share this rather succinct explanation of the social model with you guys. Your disability is not your fault. Please remember that!
(via family-in-chronicity)
Worse feeling ever!
Stop waiting to be ill enough.
You’ll never feel ill enough. There will always be a little voice in the back of your head whispering that you’re fine, really, you’d be okay if you only tried harder.
That little voice isn’t the voice of reason - it’s the voice of internalised ableism, and you owe it nothing.
Find someone who can help you. Apply for the benefits you need. Use the mobility aids that make your life easier. Give yourself a break.
You deserve it. You are ill enough. You aren’t faking it, you aren’t mooching. You’re surviving, and you deserve a round of applause.
What happened to friends when I got sick...
[gif of the 10th doctor standing in front of the tardis on a snowy night. Text reads, “They leave.”]
Are you an angry spoonie at the post-secondary level?
I want to talk to you!
I am writing my term essay on the lack of resources available for chronically ill students on North American campuses. This essay is important because at my university, disability accommodation is largely left at the discretion of faculty, meaning that if you miss a test or assignment due to illness, even with proper documentation, the most a faculty member is required to do is redistribute the percentage of whatever you missed. You are not entitled to a make up test or assignment and there is no rules as to how the missed percentages have to be distributed. I have written a final essay at 72 percent of my final grade due to being sick for a midterm.
I want to hear about your experiences. What support have you received (or not received) as a chronically ill student? Has being sick influenced your ability to complete assignments, attend class, or graduate on time? How much stress is added to your academic year by being sick? How do you compensate?
These are the kinds of questions I’ll be asking. So if you’re down to talk in the next few weeks either over Tumblr or via Skype, please let me know.
Let’s make healthy people as angry as we are.
I graduated from my M.A. before I became disabled, so I’m just signal boosting. <3
I’ve had teachers refuse to give me more absent days, refuse to extend deadlines, and kick me out of class for falling asleep. (I have narcolepsy)
Feel free to contact me. I’ve been in college classes for almost 8 years now and sick for 6 of them. I have fought with professors, the disabilities office, and the school (dean included). And of course I’ve fought my body to do all this as well. It’s been a really journey to finishing my MA this summer.
Oh totally forgot to add that I also work for the university
This is brilliant and such an ignored part of campus disability services. Part of the reason I’m still struggling so much
@spasmatomancy, @leftnotabled, @porchcat
Hey! I got sick my last year of college when I was at a school that is particularly crappy at “disability” services. I’d love to talk to you!
when my body keeps acting up
Saying "I know you people with chronic illnesses don't like suggestions but are you sure you don't have..." Is the sick persons version of "I don't mean to be racist but..."
[Photo of me at the Rare Disease Day celebration at the Boston State House]
I can’t even begin to describe how amazing today was. Totally worth the 2 hour drive to Boston to be able to connect with over 400 people who are part of the rare disease community - patients, care givers, advocates, doctors and industry allies. While I disagree that everything should be patient driven - I have way better things to do than fight a doctors office or insurance company for recognition...like feed myself - I do agree that the patient voice, my voice, our voices, is not incorporated even close to enough and sometimes not at all when we see specialists.
I got to talk to other sick young people, I got to talk to people who run amazing organizations, I got to see the Massachusetts community fighting for recognition for people like me.
While I still don’t and may never have a diagnosis I was in a room full of people who understood that. In the 2.5 years that I have been sick I have never felt that kind of love and acceptance and understanding before. It’s time to start making waves in Western Mass where our resources and access is much more seriously limited.
Thank you to everyone in the Rare Disease community today. I didn’t know I could feel this loved and honored and cared about and supported.
what do you mean you can’t go out anymore I prepared psychologically for 72 hours for this
Story of my life.
What is a Rare Disease? In the U.S., any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult. For more information on rare diseases, visit www.rarediseases.org.
Check out this video to learn more about the definitions for a rare disease and the experiences we face.
The people that are impacted the most by the tightening rules on opioid distribution, are not the inpatients, or the drug-seeking populace of our cities, but rather those with chronic pain, who lead their lives wondering why they’re suffering, and when they’ll next have a taste of what it is like to live without the agony that plagues their lives.
Share Your Secret | These Resources May Help (via mypainsecret)
I once had a doctor tell me that she would never ever give me opioids unless I had cancer pain. I told her that she was a young doctor and probably hadn’t yet had a patient that suffered so badly from her care that she realizes that there are exceptions to her rules and that I wasn’t going to be that person. So I found another doctor who had inherent trust for me as an individual and could give me the drugs I need to live. Also, what why is cancer the bar for what it’s like to suffer? My chronic pain has nothing to do with cell mutation, why am I measured by the cancer bar?
You remember too much, my mother said to me recently. Why hold onto all that? And I said, Where do I put it down?
Anne Carson, from “The Glass Essay" (via jacob-86)
Story of my relationship with my partner...
I’m 17 years old, nearly 18 and I’ve had a constant headache for the last 13 months. I have had every test you could possibly think of and no one knows what it is. Nothing makes it go away and no one understands and people say stupid things like “oh yeah I had a bad headache the other day I like totally get it” but they don’t and it makes me so angry I could scream. And honestly I’m scared I’m going to have to live the rest of my life in pain and I’m not prepared to do that…
Share Your Secret | These Resources May Help (via mypainsecret)
At 21 I developed chronic nerve pain in my left arm and over the last 2.5 years it has spread to my entire body. I’ve also had a whole bunch of tests with no results and am in pain on a daily basis. Doctors can be so flippant about how crazy horrible it is to live like that. To whomever you are - I so so so understand. Follow/message me if you ever want to talk about how much it sucks.
