DEAR TUMBLR FRIENDS,
I am writing an essay about the representation of non-binary gender.
If you have any thoughts that you think would be important to include (especially DMAB folks, since I cannot fully comprehend that subject position as a DFAB person), please please please drop me a line and let me know.
There is a serious lack of discussion of non-binary gender in academia, and if this paper goes well, I would like to pursue getting it published. However, I need input from others so that I can communicate a variety of experiences of non-binary folks that are different than mine.
Please signal boost. <3:)
heremaintenant asked: when was the last time someone of the opposite sex hugged you?
Uhh like a minute ago
Anonymous asked: Looking for someone to talk to about my situation. I'm a cis pansexual female, suffering from severe pelvic pain due to pudendal neuralgia. Even *fantasizing* can bring on hours of agony, much less having sex. Intercourse, oral, toys -- none of it is possible for me anymore. I'm heartbroken -- how do I find a new way of being sexual if I can't even allow myself to be aroused? I can't find anyone to talk to who doesn't minimize it or deny that I have a right to be hurt that I can't have sex,
Oh wow, anon. I’m so sorry that you’re going through this, and that you’re having such a hard time finding solid support.
I have not experienced pudendal neuralgia, but I do have experience with pelvic pain (and other types of pain) seriously impacting my ability to have sex. It is incredibly difficult to navigate, and I truly empathize with your situation. Not that you need me to tell you this, but you have all the right in the world to be hurt.
I will post this on this blog, and I will also reblog it to my personal blog so that other folks can have a chance to respond. If there are any specific ways I (or the followers of these blogs) can help support you, please feel free to let us know, anon or not. xoxoxo
How do you deal with a public that still largely sees people with disability as lacking in sex drive? Apparently if you’re a disabled woman you are assumed not to be able to — or have any desire to — have sex. So you have a paradox, whereas able-bodied lesbians often say there is more to them than the people they have sex with, lesbian and bisexual disabled women are fighting for recognition of our sexuality. It is a continual struggle to find a place for ourselves, to break out of social isolation, to find intimate partners and even learn to accept our sexual orientation and bodies.
Ecstasy of a Cripple
© 2013 by Thomas Dodd
The model is Jocelyn Woods, a young woman with a muscular disease who wanted to create erotic imagery that would dispel some of the misconceptions about people with disabilities. Through the strength of her determination and will, she was able to raise money to have me come up to her in Vermont to make these images. This is the first result… Stand by for many more…
It was a highest honor to collaborate on this masterpiece with Master Dodd.
My body isn’t always compliant. It doesn’t always do what I want. It’s not always the best place to be in. Sometimes it’s wracked with pain and it scares me and makes me unable to comprehend the realities of living in a body plagued persistently with chronic illness for the rest of my life but today, fuck, today it’s beautiful. And for once that’s enough to get me through.
Oh, and I swear to fucking god if you delete my caption and remove this context when reblogging this to your shitty, creepy blog that fetishizes “curvy” girls without their consent and adds them to your anonymous cyber spankbank so you can jerk your crusty dick off to it later, I will come to your house and punch you in the face.
You are awesome<3
Trigger Warning: rape, death of a parent, victim-blaming, suicide, drugs, food, trauma
My mother had fibromyalgia, and I remember growing up watching her suffer with the pain, the fatigue, the ever-changing trial and error of treatments- not to mention the social factors involved with being disabled with an illness not all health care providers know about or acknowledge.
My own symptoms started when I hit puberty at the bright and early age of eight. I remember feeling so sick and exhausted and sore and staying in bed for a month because I felt sick. I went through tons of tests, but they found nothing. “Depression”, they told my mother. “Snap out of it”, they told me.
My symptoms got worse as I got older- especially after my mother died when I was fifteen and after I was raped when I was seventeen. The emotional stress triggered severe new symptoms, and living became too much. The combination of emotional and physical pain was more than seventeen year old me could handle, and I made my most serious suicide attempt. Friends found me lying on the bathroom floor, and I was transported to a hospital. I don’t remember anything until waking up the next day and ripping the IV out of my arm- furious to be alive. This only confirmed what doctors had always told me- I’m depressed. Here, have some meds.
I’m not going to go into describing all of my symptoms, because that would be exhausting and I’m using a ton of spoons as it is. If you feel it’s important for you to know so that you can relate better or whatever, feel free to ask.
I left my hometown as soon as I graduated high school- away from the people who had known my mother, whose absence was (still is!) indescribably devastating. Away from the people who called me a slut, who told me I asked for being raped, told me it was my fault, told me I was full of shit. Away from all the people I’d fucked hoping I could feel something other than pain. Away from all the friends who stood back and did nothing as I spiraled into self hate. Away from a place where I was one of the only out queer students, where I was harassed for who I choose to fuck. I don’t go back there anymore. Not only had all these fucked up things happened to me, but my body was trying to kill me, I could have sworn.
I spent the first two years of university regaining my emotional and mental health, making new friends, formulating dreams, passionately involving myself in activism so that I could fight to change things for people who were going through the things that I had been through. The summer between second and third year of university, I was hit by a car while crossing the street. Hard. My physical health continued to get worse, and getting through my days was so incredibly painful and uncomfortable that I finally made the decision to go through the frustrating process of medical testing so I could figure out what was going on. I’d watched my mom go through this, and that within itself was triggering- but I was tired of living this way. I was ready to take control of my own life.
Well, fast forward through two years of vigorous research (I’m a huge research nerd), ~10-20 different doctors, natural medicine, ~50 different pharmaceutical medications, many (often painful) tests, vitamin supplements, injections, pain clinics, various types of physical and mental therapy, and much more.. Here are the things I have discovered:
(disclaimer: This is an account of my personal experience, which is based on educated opinion and trial and error. I’m not saying it will work for anyone else, but I believe strongly that it’s worth a try- and anyone with fibro will tell you, they’ve tried a fuckton of things. I also have the privilege of having been under my dad’s health care plan while in university, and of living in Canada, where health care is generally pretty affordable.)
Fibromyalgia is real.
Some doctors will not acknowledge fibromyalgia as real, because there is no way to test for it aside from elimination of any other possible health issues that way cause symptoms.
This is not the case. From the research I’ve done, and from my own lived experience, it seems that fibromyalgia is the manifestation of a group of symptoms that have some sort of underlying cause-that cause is just usually unknown. Finally, only a few months ago, I found a doctor who is interested in looking outside of the box a little. He managed to figure out that all of my health problems (fibromyalgia, chronic fatigue syndrome, arthritis, neuropathy, hypoglycemia, hypothyroidism) are caused by mitochondrial disease. This literally explains every fibro symptom. There is a blood test for mitochondrial functioning that I highly recommend folks ask their doctors about. Mitochondria are some interesting little organelles that are responsible for A LOT!
Fibromyalgia is trauma-based.
There’s no concrete answer to what causes fibromyalgia, but after tons of research (books, internet, chatrooms and message boards, doctors, studies, reciprocal stories of lived experience) the common denominator appears to be trauma.
When you undergo some sort of physical trauma (ie: car accident, a fall) or emotional trauma (ie: abuse, death of a loved one) your body responds with the same chemicals to allow your body to go into “fight or flight” mode. Basically, if you are genetically predisposed to some sort of health problem that may trigger fibromyalgia and you undergo trauma (especially repeated trauma or multiple instances of trauma) your brain goes, “woah, dude. You’re asking me to make a lot of these chemicals, that can’t be right. I’m gonna make minimal amounts now instead”…so your body always thinks it’s going through trauma and does not release the same chemicals to deal with it as a person who doesn’t have fibro.
Get off drugs.
The medical care system’s response to fibromyalgia is drugs. Anti-depressants, benzos, opioids, opiates, nerve blockers and more.
Now, listen. Some people need drugs to live. Some people need drugs to increase their quality of lives. Some people need drugs because they do not want to make other changes to their lives, and drugs are an easy and effective way for them to live their lives. Above all else, I believe that everyone should have the choice to use drugs any way they please.
However, in my personal experience in treating my fibromyalgia, drugs have only ever made me sicker. Part of what mitochondria do is they filter out the crap from your cells so they can use good stuff to make energy. If your fibromyalgia is triggered by mitochondrial disease or disfunction like mine is, taking medication will just overload your body with toxins. If you are able to replace taking drugs with the lifestyle changes that will follow, I highly recommend doing so. Or at least giving it a try. do not intend to shame anyone who needs to or chooses to use drugs to treat fibromyalgia (or anything else), but it would be unfair to write this whole list about how to heal from/ learn to live with fibromyalgia without addressing one of the most important aspects of my journey with it.
Drugs also do not allow you to access the deepest levels of your consciousness, in my opinion and experience, which is vital to the mental and emotional health that is innately tied to your physical health and well-being.
Yes, this includes alcohol and other “street” drugs as well as pharmaceutical drugs.
Take care of your mental and emotional well-being.
We live in a world that is oppressive and induces a ton of trauma. I don’t think there are many, if any, folks who have no been traumatized in some way. Trauma is central to fibromyalgia. So, in radically healing yourself, it’s important to get to that root and work through the traumas you’ve experienced in your life. Guess what? You fucking deserve it. You deserve to feel good
Personally, I’ve done CBT, feminist narrative therapy, and energy therapy. They were all very helpful in different ways. If you can’t afford private therapy sessions, look into community support groups, or call your local mental health services and ask them what kind of options are out there that may work on a sliding scale or for free. They will often have resources to suggest. If you can’t find anything at all, consider forming a support group of your own.
Get together a solid support network.
You will need support while going through this process. It takes a huge toll, both physically and emotionally to live with this disease, and you should not have to go through it alone. Ask supportive people in your life (partners, parents, siblings, close friends, aunts, uncles, grandparents, centres for students with disabilities, therapists, professors, teachers, doctors) to support you in your management of your illness. Try to figure out specific ways they can physically and emotionally be there for you. They will need support as well, or they’ll get burnt out and you’ll both feel shitty. This is important.
Here’s an example of a few ways my partner supports me:
- we communicate about my energy levels using spoon theory
- he is supportive (though he doesn’t police) my lifestyle changes/eating habits
- he is mindful of my ability levels
- he attends doctor’s appointments with me
- he learned to release my trigger points
Maintain a solid bedtime.
Go to sleep and wake up at the same time every day. This is really hard. Especially if you’re in your early twenties, like I am. But seriously. It makes the biggest difference in pain and energy levels, as well as other symptoms like memory and concentration.
Diet and Nutrition.
Figure out what your food intolerances are, and stick to a very strict diet. This has been the single most important method of managing my illnesses.
Your intolerances may be different than mine, but I will share mine with you anyway, since they are all common to fibromyalgia.
Gluten. It increases inflammation in the body. Three days after going off gluten, I was off pain meds. Seriously. Plus it’s all GMO and gross and not really good for you anyway. You’ll feel so much better.
Nightshades. There jerks are full of alkalines, which apparently our bodies don’t usually like. Tomato, potato, zucchini, banana, peppers, eggplant. Don’t do it. Infammation sucks.
Sugar. Lots of people with fibro are hypoglycemic. When we eat sugar, especially processed sugar, our bodies are all, “WOAH I’M GONNA OCK SOME SUUUPER HIGH BLOOD SUGAR! OH WAIT, I CAN’T PROCESS THAT….OKAY CRAAAAAASH” and then life sucks. Cutting out sugar is REALLY FUCKING HARD because it’s in everything. As you can see, this has been a big deal for me because mmmm sugar. Coconut sugar is a great (though expensive) alternative that doesn’t affect glycemic index.
Things that are good for us: dark, leafy greens, iron, high protein, organic
Supplements and vitamins.
Vitamin D has made a HUGE difference in my pain levels, and has also really helped my depression and anxiety. Omega 3 and 6 help my pain a lot, as well as my energy. Iron makes a big difference in energy levels (if it makes you constipated, take it with magnesium).
Heat and water therapy.
Heat (ie: hot water bottles) are very helpful for sore muscles and cramps. Warm/hot water is even better. Find out if your city/town has a therapy pool with warm temperatures. Often they will also have wheel chair access and provide swimming belts, which are great for floating around of water-walking/running and take pressure off your joints and muscles. Don’t over-do it. Remember, the gentler the better. You don’t want to overexert yourself and cause a flare up.
Again, this is just what has worked for me. I feel so much better, and I’ve been off drugs (and living according to this plan) for nearly a year. I’m healthier, happier, and am proud of myself for committing to my level of ability rather than what is expected of me because of the ableist society I’m situated in. I still have a long ways to go in my healing, but I’m working towards it. Isn’t life a perpetual process??
I hope some people can find help in what I’ve written here. Thanks for reading~
This is a 15 page document about chronic pain and communication. I have found it extremely useful, especially the sections containing techniques for dealing with critical people in your life. The document contains the following:
- A Definition of Communication
- A Model of Communication
- Breakdowns in Communication
- Styles of Communication
- Information Communicated in Messages (instrumental vs affective)
- Ways of Maintaining Communication
- Invitations to talk (door openers)
- Active Listening
- Communication & Chronic Pain Behavior
- Effect of Pain on Communication
- Effect of Communicating Pain Behavior
- Assertive Inquiry
- Broken Record
- Content-To-Process Shift