illness and disability

Jan

2024

Tips for Kinking with Chronic Illnesses

1. Practice describing what is going on in your body, early and often. I used the McGill Pain Scale to learn to do this better (for both fun and not-fun pain)! Whether or not you use traditional safewords, there will come a time when you’ll have to say what you’re feeling — whether after calling red, or in-scene. There may even come times where your tops ask you to describe what you’re feeling even if you have *no* desire to stop (and as number 1.5, I’d suggest you explicitly ask that they do this every so often!)

2. Practice describing what is going on in your body, early and often. But I don’t just mean the words… I mean the lack of shame and filter. If you have any fear around saying that you’re about to have explosive diarrhea when you’re not playing, you certainly aren’t going to be willing to in the charged dynamic and fear of CNC.

3. And find other ways of making partners aware of your state, especially if you’re the type to want to do something like CNC as a “surprise” scene or in a longer-term relationship where sex and play might not have full negotiation every time. With some illnesses/disabilities, this may not be a thing you can do anymore, period. But getting in the habit of emailing daily check-ins as to specific symptoms, having a piece of clothing that indicates go/no-go, etc. can be helpful tools.

4. Keep your partner(s) informed about your medical visits and team. My partner knows my different doctors’ comfort levels with kink, and all those appointments go on a shared calendar, and He can use that for His planning in a lot of ways.

5. …and keep your medical team informed about kink before they need to be, unless you’re in a position where your symptoms are totally stable for you and you are unlikely to have anything new pop up. I tell every doctor I have about my sex life on the first visit. I have stopped seeing doctors after that first visit before based on reactions. Better that than for there to be an issue later on.

6. Practice gentleness with yourself. The hard part for me hasn’t actually been the during or even the after. It’s the last minute cancellations. I’ve had to retrain myself into believing I have time, something which I had previously trained myself *out* of. A “seize today; tomorrow isn’t promised” mentality just doesn’t go so much with disability and chronic illness, even though it also inspires it in many of us. The first few times… hell, the first few *years* I had to cancel playdates last-minute that I had gotten excited for, I made myself feel like absolute shit about it. That helps no one.

7. If it’s something that works for you, see if emotional types of play (even just fearplay mindfucks) are a good route. See if there are physical types of play you aren’t already doing. When I can’t do rough body play because everything keeps dislocating, needles can happen with me being still. When I can’t do that, I can still be hypnotized into thinking something much more physical is happening… more than I had any idea until very recently. But that’s me. Kink doesn’t look just one way, and getting out of a rut we’d fallen into as to how our kink played out really opened up so much more than I had any idea it would and has been nothing but positive.

8. And finally — labbing isn’t just for rope! Any kind of toy or play can be done as a “lab” to figure out what someone’s base-line reaction is. and because different tops use different tools differently, I think it’s important to do this with each play partner. We will go through new toys and what a “1” would feel like, what a “5” would feel like, and working up from there until i’m like NAH. I can handle my partner giving His “10” on some things, but not every thing, and He doesn’t have any way of knowing that I’ll react that way with a new toy (even if we’ve played with other versions of that same toy). With chronic conditions that change state, if there are states that aren’t “I’m feeling great!” but also don’t = “we can never ever play if I’m like this,” it can be worth it to name those states and lab things out there when you’re feeling them, too. If I’m not at my best and we want to play, I can say I’m at something we know like “my bones are crunchy” (or just do a small lab earlier that day) to help my partner gauge how I’m experiencing things. Now, the charged environment of a scene does change how things can feel and how people respond, so this is not a catch-all. But it is still helpful for Him to know my baselines so that deviations from said baseline can be judged accordingly.

And I guess I’ll end reiterating 6 again. Be gentle with yourself. Disability and illness are spectrums and our places on them change. What doesn’t work right now might tomorrow. What you don’t know about yet could be your favorite thing in the future.
And don’t forget to hydrate.

If you want to join in on the conversation in the comments, this post can be found on Fetlife here!

Jan

2024

My considerations for play re hypermobile Ehlers-Danlos Syndrome (hEDS)

Necessary Disclaimers

This is not written to be about anybody else’s possible experience with Ehlers-Danlos or their play, only my own. I do not cover all our play or all my symptoms, nor do I attempt to reckon with the relative intensity of either.
This is also not a user’s guide meant to help others play with me—I remain monogamous and this won’t be changing. So why write it? Because though my experience may not echo yours, though you may have more or less or different limitations than I do, my hope is that other people who have EDS or are playing with people who do are inspired to think or talk about something they haven’t. To this end, I’ve added a few quotes from others who shared their considerations with me as I typed this up and invite others with EDS to share in comments.
I also am writing this because I want you to know that if you have this diagnosis (or any other disability), you don’t have to feel your life is over or that you can’t do the things you used to love. You may have to modify many, you may not be able to do all of them, and this isn’t to say that anger, depression, and grief as a response isn’t valid—simply that adaptation and fulfillment remain possible.
Though I do some explaining where relevant, I’m not really going to get into what EDS is in great detail—I assume if you’re here you already know or at least are able to Google it—besides to say that there are 13 types, and all have differences. I am speaking from the lens of type III, hEDS. While still classified as rare, this is the most common subtype and what all those I quoted who identified their type named as well. I *will* link you to this, the Beighton score, which will tell you if you are hypermobile. (Hypermobility is not strictly the same as flexibility.) Many are hypermobile to some degree; you can be benignly hypermobile, pain-free, and never experience harm as a result of it. You can also have HSD, hypermobility spectrum disorder, where you do have musculoskeletal involvement and joint/pain damage without the collagen also affecting other bodily systems as in hEDS. Some people with HSD experience more disability than some people with hEDS—both are on spectrums.

Joint Hypermobility Considerations in Play

Rope

It is my aim to be non-prescriptive with the majority of writing, but here is where I will be for a second: it is extremely important that rope bottoms and tops know what hypermobility is and have a sense of how to identify and approach it. I have a theory that—for several reasons—hypermobile people are more drawn to disciplines where hypermobility can be used. Therefore, there is a higher proportion of hypermobile rope bottoms than some would expect. Unfortunately, though hypermobility does not always translate to hyper flexibility, it is commonly exploited when it does.

This was something that was made use of with me often in suspension. I did not feel active pain at the time and did not know it was a problem. I even encouraged it, so I don’t blame my rope top, though I now believe new rope tops do need education on this: in suspension, the influence of gravity + time = passive stretching, and where most people’s bodies would say, “I can no longer sustain this; this is incredibly painful. Take me out now!”, hypermobile ones will not until it’s far too late. They will not offer the same resistance “normal” bodies do that signals they can’t bend further. I would keep deepening into a stretch in a way that could be fine if I were doing it healthily, but I was not. This will eventually dislocate joints. And while I never had any full dislocations that resulted from suspensions, joint damage is also cumulative. I genuinely believe that I would not be disabled in the way I am now if I did not suspend frequently for the first 3 years of my adult life. I still would be eventually, most likely, but I think I sped that process up.

What this means for rope bottoms in general is that you are safest engaging your muscles the entire time you are suspended in flexy positions, and you should seek out rope tops that know this and will encourage this and will not tie you at your usual limit, knowing a position will likely deepen. Disciplines like circus and pole—ones that train you to achieve these positions in the air and using your strength instead of with the influencing factors of relaxation, pushing into the floor, and other elements you might see in yin yoga (as one example)—will help. I believe ShibariStudy has videos with mobility exercises for hypermobile bottoms and I have a post on healthy stretching relevant for everyone but particularly hypermobile bodies, here.

What this means for me is that I do not do rope suspension anymore.
[ADDITION, OCTOBER ’24: You can now hear more about this journey on episode 184 of RopePodcast, available on iTunes, on Spotify, or on SoundCloud! 🎉]

@LovelyDarkness says:

I strongly recommend working on building strength to actively control any hypermobility or extreme ranges of motion you go into. People often gravitate towards bendy poses in rope and the bottom may be sitting in the position completely or somewhat passively. This could be unknowingly putting strain on their already lax tendons and ligaments making them more susceptible to injury. Also, that strength will also benefit your joint stability in any vanilla activities you do. Also, keeping my partner up to date of what joints are currently being problematic and which muscles are strained.

Other kinds of bondage:

I am a twister and a puller. This makes anything where I have a joint strapped into place but the rest of my body can move a problem. Things like Saran Wrap mummification-style bondage? Great! I can’t pull any of my limbs in crazy ways like that at all, and that’s both good for me and bad for me (in the way I like.) Otherwise, I must be careful. If I’m being whipped on a cross at a party, you might see me holding on to attached cuff points–but I will rarely be strapped into them, because I will twist and pull away more than I should and that might lead to a shoulder dislocation. We have a four-point bed bondage system that we play with sometimes which has less risk to me because the gravity influence isn’t there, but my Owner has absolutely has had to remind me to flail less when in it.

@-Gingerr- says:

I like more of a primal type fight for dominance during actual sex as I tend to separate sex & kink. I can’t be in bondage, partial dislocations are common for me and I need to be able to manipulate my joints back into place if they move in a way they shouldn’t. Bondage wouldn’t allow me that freedom, but being physically held down, I can ‘yellow’ fix my joint quickly and get right back to it! Not being able to fix it quickly would cause me pain longer term.

More joint considerations in general:

Being choked out is one of my favorite activities. My Owner of course always guides me to the ground if we do this and I’m upright, but has to especially watch how I land because my knees will basically bend wherever they decide to. Recently I came to on the kitchen floor and just as soon as I was conscious enough, He pointed out to me that He had been unable to fully keep me from partially W-sitting so that I could correct it ASAP.
It used to be that when I kissed his boots, He would sometimes put weight on one of my hands with the other foot. It was always gently, but as I’m starting to have more wrist involvement lately and this is my biggest personal risk concern, I don’t know if this will be something that can safely part of our play going forward. We’ll just have to see.
As a sort of opposite point, needles are one of the types of play I engage more frequently in because they *don’t* involve joint hypermobility considerations. On a day I can’t be swatted around or thrown into a wall, I can still lie still and be a pincushion without needing much mobility at all.

@SweetWhisky says:

While [hypermobility] means I can be folded up and thoroughly fucked, it also means that if I safeword due to needing released from a tie, hold, or position, I need to be released immediately. While my body can do a great many things, if it decides it is done every second increases the pain and inflammation response.

@SassyShrugs says:

As a rule, I have to be careful with rope bondage and rough scenarios as it is easy to cause my shoulder or a knee to pop out and damage me. My right arm can’t handle being bound back/at certain angles and I cannot lay on my right side for any period of time. I have to be very cautious about what ties I allow done that will impact my chest/shoulders. I also cannot run (dislocate) and am hesitant about anything that might impact my knees.

Skin Considerations in Play

I scar easily and unpredictably; though we used to play often with scalpels (basically my favorite thing) and I have lasting scars from this, my largest is actually from a single-tail whip.
I also heal slowly. To go back to needles, needle sticks that might not cause giant dime-sized bruises on others may anyway on me. They often last 3-4 weeks, sometimes more. I bruise not as often everywhere with impact because my butt has gone gothmetal, but when I do, it’s often dark and large and near always heals slowly.
While my skin doesn’t break as easily as some in other varieties of EDS, I definitely have had swings from various impact tools split skin when we didn’t expect them to.
I see doctors much more frequently than others and sometimes at very little notice. This is something we must think about in combination with the above. I establish kink on every first doctor’s appointment and do not see them again if there’s any discomfort. Yes, I have been turned away from doctors for it.

@808KD says:

I’m also immunosupressed due to inflammatory arthritis. So my skin is fragile and I’m WAY more likely to get infections. But I also love implements like curry combs. So I have a rule that I don’t allow broken skin where I can’t see it. […] Before play I clean all implements very carefully, and I shower with Hibiclens after play.

Sex

Positions:

Most of my joint issues right now are in my upper body. I don’t have a lot of hip involvement currently, though they clunk a fair amount. Many with EDS use sex swings to reduce hip dislocation by stabilizing plane of motion. We do use props such as stacked pillows to support me, which frankly we did for pleasure long before I started learning about all this.
SweetWhisky mentions being foldable and fuckable and… yeah. My legs can be thrown back behind my head pretty much at a moment’s notice. This feels amazing and is one of my favorite ways to get fucked, and I know how to engage the appropriate muscles due to contortion lessons, but this falters with *ahem* less focus and it’s possible it does damage.
The best sex position for me at the moment is being fucked on my side in a kind of a fetal position with my hips elevated on a pillow, with Him kneeling upright next to me. This really allows us to minimize my movements and if I’m having a bad shoulder day, I can decide which side I am on accordingly. Since it keeps my hips together too, it will probably be a great position for us long into the future. It also gives easy access to my tits. (That’s not EDS-related. It’s just fun.)
The other most frequent with us is doggie style. When I’m in more pain, I actually do this putting a lot of weight on my knees/shins and face in addition to chest and sort of putting my hands on either shoulder in a coffin type position. Again, this minimizes movement. There are days when I can’t find a good position for my neck doing this but am still horny, which brings me to…
I can kick off sex with blowjobs on my knees for a short while and sometimes can give them with Him lying down and myself on both hands and knees, doing a more push-up type motion than anything else—but for the most part, I end up making too much movement for my unstable neck and shoulders to do either for long. But by far the easiest of any kind of sex for me is—yes, I’m serious—lying down and having my face fucked. On a memory foam contoured pillow, my head doesn’t move much at all doing this, and Him straddling my chest and arms keeps them in place. And I have no gag reflex at all anymore in this position and think it’s hot AF. So yes, yes, it’s true. In my most out-of-commision-but-still-sexy state, my best way of getting sexual connection is having my mouth turned into a passive hole. Lucky me, I’m a broken little thing in other ways and can get off to this the way my Owner does it. YMMV.

@808KD says:

Jaws suck to put back into place. So I prefer to use an open mouth gag for throat fucking. It keeps jaw fatigue to a minimum and I won’t get overzealous and open too wide and dislocate my jaw.

Pelvic organs:

Something worth mentioning is that—by some estimates—more than 50% of all those with a uterus will experience pelvic organ prolapse at some point in their life. Most of this will occur at the very least after childbirth, and often not until menopause. There’s a population likely to have them much younger even when not having ever given birth and if you guessed that’s people with EDS, you’re right! This is actually what led me to my official diagnosis.

I have a kind of prolapse called a cystocele. It’s not visible from the outside and my Owner has said that it’s not something that He can pick up on. It was noticeable enough to me to get it diagnosed, but since that happened, I either stopped feeling it or just got acclimated to it enough that I don’t notice. It won’t get better. I can only try to prevent it getting worse. The use of overlarge toys was never an interest of mine or part of our play, and it probably won’t become one in the future for this reason.

At the appointment where I learned about my cystocele and the EDS connection, I was told that to avoid rectal prolapse, I should not have anal again. This was very sad for me as I was able to come from it, but that’s just how it be sometimes. I’ve had other EDS people say their doctors saw no problem with it, so consult your own professionals. (Update 2024: recently, we’ve had some progress in my disappointment in this in that it turns out hypnosis is very effective on me! I will not be taking further questions at this time. *hides immediately*)

@-Gingerr- says:

EDS & childbirth gives a higher chance for a prolapse (note for education here, there are 4 stages of prolapse and only 2 involve organs outside the body, the other 2 are just a slightly lower placement than ‘normal’ inside the body). My cervix will always sit lower in my pelvis now than it should and no amount of kegels will improve it further than the progress I’ve already made. Part of this is psychological, I like to be filled when I have an orgasm, preventing my cervix from moving further down as my muscles squeeze during an orgasm. If im not filled I worry my cervix will move further down again and cause long term discomfort. Secondly because its always a bit lower, some sexual positions will always hit my cervix no matter the size of dick I’m being penetrated by. I enjoy a little bit of masochism but there’s only so much of a cervix beating I can take so some positions are for minimal time, or not at all.

Birth control

If and when childbirth is a thing for me, there are a number of potential complications. Luckily, I have the best possible OBGYN for this. Still, because it’s very very important this not be a thing for me til I’m ready, birth control became even more of a priority for me than ever before.
I was always super sensitive to birth controls and paid hundreds of dollars a month at one time to keep from having to take a kind that turned me into a demon (ACA is not a match for a particularly predatory patent.) My very EDS-knowledgeable OBGYN puts all her patients in this category on the lowest estrogen pill possible. Though YMMV, it is my doctor’s belief that none of her patients with EDS should ever be on a progesterone-only pill (minipill) or use the shot and that we be very careful with the implant or IUDs as we may have a heightened tendency to have them move out of place. I am inclined to take her advice.
At the time I met her—right after I became aware of my pelvic organ prolapse—I was a few weeks post-taking the morning-after pill. I never want to take that again in my life; it was a nightmare for me, and therefore, my daily pill is even more important and something that would need to be thought about for any multi-day scene. Plan B works by using enough progesterone to make your body think you are already pregnant, therefore preventing a pregnancy from taking. It is possible that the complications I experienced then were a direct result of the hormones already telling my lax body to relax more.

Heart, Vasovagal, and Dysautonomia Response

POTS is not necessarily always part of EDS, but it’s highly comorbid. Being upside-down could cause me to pass out or have some other response in this realm; since suspension is no longer a thing for me, this isn’t such a big category for me these days. However, hydration is a big way I manage these symptoms and is something I prioritize every day and especially on play days and throughout play.

@SweetWhisky says:

My tachycardia is easily triggered, though being horizontal means I almost never pass out. What does happen easily for me is constant adrenal surges and tachycardia. This paves the way for subspace to be a rather easily achieved goal with me. However, this also means that intense sex almost always means recovery to a level like I’ve been having panic attacks. It means intense exhaustion can be a very real thing. I’m also a squirter to a serious level, which can leave me heavily dehydrated. Coupled with the tachycardia and adrenal surges, this can be hell on my body.

@LovelyDarkness adds:

extreme reactions to temp. If its too cold I loose circulation and get a Raynaud’s attack, if its too hot, my extremities swell and I get dizzy. So I need my play environment to be a safe temp. for me. Additionally, with my autonomic system out of wack, it can impact things like being able to orgasm. So, being aware and communicating that is just my body and not a reflection on my enjoyment of sex or my partner’s sex skills.

@sadie writes in-depth about experiences to this end on Fetlife here.

The All-Encompassing “Other”

There are a few other factors I have to think about when it comes to EDS and kink. Big ones right now are

I have some issues with bladder proprioception (I can’t always tell when I really have to pee, leaving me sitting for an hour or more at a time waiting for it to happen sure that it will any second) and sometimes GERD. I have a comorbid Chiari Malformation which causes migraines. Managing these is a consideration of mine on planned play days especially, to be sure.
MCAS is another common comorbidity. Since we don’t know what I’ll have an allergic reaction to, I now have epi-pens in my bedroom and my car. At any party we go to in the future, one will come in a playbag.
Disability makes me more dependent on my Owner’s support, both emotional and financial, and this can affect how people come to the table in terms of consent. We communicate extremely well but I try to self-audit frequently as to how this fact pertains to our communication, especially in light of the sometimes very intense emotional S/m we engage in. (I also fetishize it for that. Hey, we all have our thing(s).)
The biggest effects on my play are the more general, cumulative ones where the associated pain and fatigue has lessened both how often I can play and how often I can be surprised by it. Though this may have happened organically over time anyway, having fewer days I can play as physically as I’d like absolutely have been aided by us developing major interests in emotional play, as well as other sorts of play like needles. But this can be a cause of depression and even breakdowns for me. I want Him to throw me into walls at random and that’s just not the life I can live anymore. I want Him to not care I’m in severe pain and fuck me anyway. Sometimes He will—to a point. Mostly, He won’t. His risk profile for me is higher than my risk profile for myself. In exchange, I tell Him about all the little changes I may experience, good or bad, so He can make these decisions. That’s why our no-safeword TPE works.
My Owner also learns about all this and its potential solutions for me alongside me (largely by patiently listening to me read things aloud and ramble), theorizes with me about connections, and attends any relevant appointments He can. This is so important to our being able to play safely.

This all kind of sounds like a lot put like this. It isn’t, in practice. Each element kind of gets added and figured out as you go and you change things and they just become integrated into your life.

I am grateful for this life. It also isn’t the one I wanted. I am grateful for my person. He is the one I always want. I feel like a burden often. He does His best to talk me out of it. Not everyone has someone like this and I know this and value it deeply. I thought I’d have more to say in this paragraph and I don’t. Simply: it just be like that sometimes. We keep going anyway.

I’ve added quotes from people throughout as I could, and invite anyone else to add their info as relevant below if you’d like. If you want to write a full note about this or already have one, let me know and I’ll add the link to the list below. I’ll also add to this as things change over my life. Finally, if you have some other health condition or limitation and want to write a note about how you use it to manage play, please send me a link. One day, time and resources allowing, I intend to make lists for the Risk Evaluation Database allowing people to search by health consideration in addition to by kind of play.

Links from others:
Nath wrote about their experience with their EDS as a top here.

You can find the original Fetlife version of this post, which has some additional thoughts and responses from others in the comments, by clicking here.

Jan

2024

The idea that consent must be enthusiastic is a privileged take on the world. (No, this isn’t a CNC post.)

Once, I would have told you that it’s not consent must be enthusiastic and informed. I would have told you that someone who says “yes” without it ever reaching his eyes and voice or who says it in a way that shows reluctance is someone who doesn’t consent at all. I would have told you that if every second of bumping uglies doesn’t make you wanna whistle, that means you should stop immediately.

I wish I were still so naive.

Because today, I know that the idea that consent must be enthusiastic is an outlook that is incredibly ableist.

That’s not to say that anyone, disabled or otherwise, can’t say “it’s only consent for me if I’m displaying typical signs of enthusiasm.” Only that teaching this as universal ignores the nuance required in a more diverse world.

Let me explain. I have disabling chronic illness. I write and speak on it; I’m not shy about it. I don’t know if that makes me an exception or not, but I do know there are far more disabled kinksters out there than we realize. Those who aren’t yet are likely only that way temporarily: on a long enough timeline, everyone will, at some point, experience something physically disabling.

And though this is not exactly the case for all disability, for many of us—particularly those with some illness involved—that means fatigue. That means nausea and vomit. That means blacking out. That means medications that affect my energy. That means depression, stress, and physical pain I can’t masochist out of.

If I only had sex when I was enthusiastic about it, I wouldn’t have a sex life.

To be clear, consenting enthusiastically at some point, in whatever form that takes for someone, including with no signs beyond communicating it exists, IS necessary. What I am arguing against is the consent model that I was taught, where consent must be given enthusiastically every time. I do see the value in that too, as someone from a state that didn’t think women in marriages could be raped until very recently. I do think that long-term consent can be problematic for some and comes with higher risk. I am especially wary as I have had numerous friends assaulted in those situations. But I’m also saying that the “consent enthusiastically in a verbal or visible way before each sexual encounter” excludes many, and that we shouldn’t do that just to cater to who we perceive as the norm.

I’m all for affirmative answers. I think showing a willingness to proceed and having a part in decision-making matters. But I don’t feel comfortable saying that sexual consent requires in-the-moment enthusiasm or enjoying what is happening when it’s ongoing. I don’t think it even requires enjoying not enjoying it, as some of us sometimes do. A choice to be involved, sure. But enthusiasm? No.

Libidos don’t always match up. They match up even less when your ability level is a shifting one. I’ve frequently despaired that the nights I’m horniest are somehow the ones I’m the most laid up. And on the other end, I’ve had spells of being almost angry if my partner doesn’t want to on the days that I’m well enough. Those are the times I’m not actually taking my desires into account—the times I discount *both* our emotional needs in a moment and prioritize only our physical states. No. Not for me. And exactly right for some others. But for me, this turns sex into something my relationship checks off a list, and I will not have that life.

I am able to be enthusiastic some days. I am. Seriously thrilled. Sometimes, sex does look like the consent education videos of my more naive pseudoactivist days, back when I didn’t consider the bodyminds that weren’t like mine was at the time. Other days, for many of us, it looks like dragging ourselves to bed because we clearly wanted to fuck earlier, so let’s go ahead now even though I’m no longer flirty and fun. It may look like little to no signs of affirmation for me because any reactionary energy I have, I’m saving so I can let go when I come. It does, in these cases, look like many varied, intense, often lengthy, sometimes tearful conversations over time:

I’ve had to communicate that I do want to when I don’t want to (in so very many ways), that I don’t always know if I’ll be capable of physical enjoyment and that I don’t always appear to be experiencing pleasure, no matter what the truth is. I’ve had to literally say, “If I seem unwilling to participate, just remind me that I actually am,” even when not talking about CNC. The me in those moments knows that the me in the sick ones still has that desire locked inside her, and that some routes there require a mentality of getting sex started when I still really don’t want to. The me in those moments knows that I’m glad the sick me sucked it up (lol, sucking).

I’m not saying that reluctance or lack of enjoyment doesn’t mean a lack of consent. I’m also not saying you can’t have a preference to only go forward if there are pink clouds and clicking heels. I *am* saying some people with that preference are absolutely leaving some other people unsatisfied. And I’m definitely saying this:

Respecting other people’s bodily autonomy, particularly that of non-normative lives, means respecting our own knowledge that our words don’t have to match how we feel to be valid. Respecting disabled sexuality means accepting what we tell you is a “yes,” even if that comes with hesitation.

Consent is an affirmation. It isn’t an emotion or personality trait.

An enthusiastic yes right before or whenever it needs to be confirmed during sex? I can’t promise that. I can’t even promise a lack of reluctance.

But I was enthusiastic about the idea in advance. I am enthusiastic in theory.

And I get to say that’s enough.

When I’m engaging in something sexual, I may be too exhausted to smile. I may cringe as I negotiate dizziness against thrusts, or the skin sensitivity that makes me pull away against the hand I do want around my throat. I may not give any noises of enjoyment or signs I want to be there. I may not want to be there the whole time. I still want to have been there.

And—whether I reach a point where the endorphins temporarily overtake things or not—in the moments after, lying in bed with weighted blanket and bucket and pills and braces scattered on our floor, I will nestle my head close to His, listen to His threats whispered like secret poetry, sometimes lurch up in discomfort, and bask in the incredible intimacy that is our trust that not today, but tomorrow, I will be singing for joy that this happened.

Endnote: my saying this goes for some in no way means it goes for all. I simply think any world in which we don’t ask “what does consent look like for you and your body specifically?” and teach it looks like a particular behavioral reaction is one that favors certain parts of the population. As the brilliant @_Pavlov_ points out in this extremely important writing on Fetlife, disabled folx face increased dangers and concerns when it comes to consent violation and abuse, and to go forward believing hesitancy will always = consent when someone is disabled is a misread of what I’m trying to say.

If you want to join in on the conversation in the comments of the post on Fetlife, you can find it by clicking here.

Jan

2024

Enthusiasm, emotional S/m, et cetera*

I have a confession to make.

I have a Negotiating/Communicating for Emotional S/m class I’m teaching this weekend that I’ve been nervous about in a way I haven’t been nervous about teaching in a long time. You see, I… kind of feel like a fraud. I mean this beyond the (unfortunately) usual youngish-woman-teaching-in-2023 imposter syndrome; I mean that I’m not sure if I can teach emotional S/m because currently, I don’t know that I can *do* it.

Or at least, that’s what I’d been thinking for a few weeks.

Life has been life. You know how it goes. Hormones. Miscommunications. Med changes. Life. I’ve felt hesitant around any sexual play or banter, mostly knowing how ESM almost always sneaks into it these days. I haven’t known if I could engage in a way that keeps me feeling whole (or that breaks me in an easily reparable way).

The hard part is that ESM is still what I want *anything* along those lines to be, so I have had a hard time feeling flirty or sexual at all. And I’ve been worried. Personal insecurities have left me thinking I just can’t handle this kind of play anymore at all.

Or at least, they had.

Then, the casual condescension started sneaking back into our more playful conversation. Ways I text or chat have once more turned to the kinds of sharp-edged tones of degradation I love. We have had a few mis-steps, but it turns out, my fears were way simpler and smaller than I had realized.

The problem was about two specific words.

Two. Words.

Not their synonyms. Not any other kind of delicious put-down or mocking tone. Just two words that mattered.

Triggers are complicated, and often very specific. What a word means to one person can have a different gravity for others. It’s one of the many reasons ESM is a minefield. A topic can be totally fine until one word sets off the “nope” button.

Words matter. This lesson was driven home to me this week in multiple ways. Last Friday, I wrote a piece on Fetlife about how “enthusiastic consent” is an ableist idea. In it, I took for granted that others would have been taught that concept in the way I was: as a physical display of emotional eagerness given each time and throughout all sexual encounters, something I feel unable to give due to disability. And hundreds replied that they have felt that way too. Still, at the same time, others felt misled or hurt by my words and how they resonated in their own, more individual readings. What I had thought had an implied “for me and my body” didn’t do that for everyone reading, and I left some feeling like I felt sex was necessary for a good life (I don’t; that’s specific to my needs) or like people should push through experiences they don’t want to be in and don’t want to not want to be in (never, ever. If you genuinely want to end something and haven’t mutually elected that experience, you should never feel like you *have* to continue.) Now, I myself may know that these things aren’t what I meant, but it doesn’t matter: people who read those words once and took away something I didn’t mean may never be reached with my corrections, and maybe their reading of my writing leads them into a bad place. There are ways I should have been careful and specific that I was not. It mattered.

Someone I Love makes “actions, not words” their mantra, and it’s sat strangely with me for many years. Now more than ever, I’ve figured out why. Words *are* actions. Which we choose, how we put them together: this matters. It is holy, sexy, life-altering work. And it has a weight and a gravity to it.

Be general. Be specific. Try to say what you mean. Recalibrate when you get it wrong. And if certain words aren’t working for you… maybe you can communicate in another way for now.

Jan

2024

I’m better at service when I suck at it.*

As a service submissive, I’ve often thought “acts of service” is an inadequate love language category. Without knowing why service means something to you or your loved one, you lack the needed information to do it properly. If the reasons behind your appreciation for service are solely in time and labor spent, solely in the idea of putting in work for somebody else proportionate to care for them, this writing *may* not be for you.

But if you are in the many of us who engage in service because we want our loved ones to have (or want them to want us to have) nice things around, or lives that are somewhat easier and allow for more time for hobbies and each other, or no need to think about the small things that must get done, or something in that vein, I have a somewhat unusual proposition: the key to good service is to do it poorly.

My Owner had me learn to cook for Him. These days, I’m fairly in charge of everything related to what we eat, and while I’ll ask His input when I’m meal planning, what He really cares about is that we have dinner and that it’s relatively healthy.

But when I started, I thought that good service was the service that I put the most of myself in to. I made fairly elaborate meals with two sides every night, tried to make sure I didn’t repeat them pretty much ever, and saw more work as better.

And I always minced my own garlic.

Lives are tough. Many of us balance taking care of children or parents, health issues of our own, work, creative pursuits, community obligations and roles, and more. We go through bursts of being able to get it all down, or bursts of focus on one or two of these in particular. And we burn out. We have phases of “doing it well” and “not doing it.” Or we give up a category or three here and there, or become personally miserable.

Okay, and then what?
Are our partners’ lives still easier if they’re managing our stress breakdowns all the time, or if we don’t have energy left to give them our best?
Do they really have less to worry about if we are every so often going to need to lie in bed for a week recovering?

Don’t get me wrong, I’m not saying that you should slack off on what is expected of you. I’m saying that if the goal is an easier life for a partner or simply things being nice and put-together, what matters is that it gets done.

Back then, I never would have used pre-minced garlic. It comes in little tubes or jars. It’s not fresh. And it also takes like 200% less work from me. This is a small part of any meal (although make no mistake, there’s garlic in *everything* I cook) and it isn’t something my Owner can taste a difference in. But while no one ever had said if it would matter either way, it seemed like it did to me.

It seemed like buying the pre-minced garlic was a short-cut, which meant “bad.”
It seemed like pressing the button on the Roomba was sucking at service.
It seemed like a lot of things that *were all in my head.*

It’s interesting how many times I’ve heard people who are stressed out around service have total revelations at this. It just hasn’t occurred to them–because they’ve assigned their own ideas to the value service brings and never asked the person they provide the service to. And yes, for some, service is an expression of amount of work = amount of care. But for others, it’s the end result that matters. So why not take shortcuts when they make the rest of the machine run smoothly?

Five minutes to my schedule here and there adds up. Fewer repetitive wrist motions absolutely do. What my Owner had asked of me was to take care of meals. That was it. That didn’t mean “to the extent that it comes before your mental health and our ability to take time together.” That didn’t mean “and the amount of time that takes you is directly proportional to your Love and submission.” That meant “take care of meals.”

So, yeah. I use pre-minced garlic. And I’m providing good service; I’m providing what my Owner wants of me. And my food tastes fucking fantastic.

Jan

2024

Why I no longer like alt “healing” spaces / How BDSM can be care**

I spent a summer in an other-this-worldly valley, a place full of pepper trees and stucco walls where everyone only looked forward. Even now, the gorgeous glory of it defies my imagination: how did we create this place where we prayed and studied and danced and chanted and painted and wrote and fucked and drank such beautiful things? How did we do so much growing together and leave it all behind?

It was 2014, and my Owner and I were not together at the time. I had broken up with Him in late April that first year because I needed us both to be more honest people, and though we kept in periodic touch during the next few months—I can remember hiding in the shade, the smell of pomegranates, frenetic music in the background, His face flickering on my computer screen—I was very much immersed in where I was. I needed to be. I was doing healing from the kind of brokenness that can be healed from, and it worked. I came back different; our relationship came together different. We were discussing collaring by October. I felt spiritually healed. Spiritually whole.

I am—or was?—so drawn to spaces like this. Built community, authenticity, healing. That’s what I thought it was. A healing-and-growing space. I wonder now what I would have experienced there two summers later, when I was realizing that something in my body was wrong and was not going away.

Since becoming ill and later on accepting my disability, I’ve grown tired—like many others who are ill or disabled in physical or mental ways—of fixes being pushed on me.

“Go outside, get some sun and some exercise—that’s all you need for depression.”
“You should try yoga. It totally cured my low back pain.”
“CBD is a miracle drug and eliminated all my aunt’s inflammation.”
“Cut out gluten; your fatigue will disappear entirely.”

These are harmful statements, though most of us do recognize they’re well-meant. They’re harmful for the same reason that I no longer feel home in these alternative spaces that claim to be about healing. It’s because the mission is never, “Yoga asana could be helpful to your mobility if you’re up to it, and meditation works for some people as a pain relief technique.” It’s never, “Do you want to hear about how diet changes helped the way I experienced that symptom?” It’s never just an “if” or “could be,” and it’s always an “entire cure,” an “all you need.”

And that’s the harm. Sick/healthy. Broken/fixed. Even in our metaphors, our language: we discuss organizations losing donors as being crippled, or good investment accounts as being healthy. Bad actors in a group are cancerous. Crime infects a city. Sick is bad, healthy is good, and if you only ate right… prayed more… didn’t get a vaccine… you could be good too. I’d argue that even the anti-Pharma movement (while totally legitimate in many ways) often revolves around people wanting to get *off* of drugs that are making them feel better because they want their bodies/minds to be able to do something on their own. The implication is that the goal isn’t feeling better, really—it’s not being sick at all.

Now that I feel I truly need it, I’ve frequently sought for anywhere and anything that could mimic what I felt that summer. I search for people with the right energy who want to connect and express themselves authentically through whatever means feel right at the time. I have entered and left spaces of ecstatic dance, Reiki, narrative medicine, prayer. And when I go, I always end feeling abandoned and empty, and healthy people pat themselves on the back. When I look back now on my pepper trees, sometimes that is what I feel, too. Because these magical created spaces are often time/space/people-dependent, and when they’re over, there’s no framework for those who didn’t heal. Who won’t heal. Who need something else.

I’ve been thinking about what I want from my body lately. Do I want my disabling pain to go away? Do I want my joints and tissues to work as they should? Do I want my mind to regulate my emotions as it is meant to? Yes, of course. Maybe. I’m not sure. It isn’t the first thing I think of. It took me a long time to get there, but that’s the truth: this isn’t getting better, so it doesn’t occur to me to want that. “Healing” isn’t an option. But maybe feeling better sometimes is.

The reason that many of our alt “healing” practices only appeal to healthy people is because of the sick/healthy dichotomy. These practices, popularized here in shopping centers and pay-your-way courses, weren’t built in that Western ideal. Most come out of Indigenous, Eastern and Middle Eastern, and non-Abrahamic religious groups, and they are from minds that thought differently. These practices weren’t meant to achieve a goal and stop. They weren’t meant to fix. They were meant to lift part of the burden. To give it to the community to share. To help where we could help and give back where we would give back. To care for people, as people, where they’re at.

Which brings me to what I find so caring about degradation. To why I feel better after He tells me that nobody could ever want me, how romantic I find his knife held almost at my eye as He fucks me, how good it is when I say “no” and He mocks me and laughs. To what some find to be toxic, non-understandable, kink-norm-bannable parts of our relationship. To what I don’t think I’d be getting by without.

I’m not getting better. Not with the information we (on the personal and collective level) have right now. So my world has moved to how to feel slightly better as often as possible. Oftentimes, that means figuring out how to mitigate the things that hurt that can be changed. I want to be clear: I don’t advocate BDSM-as-therapy. But I do believe in BDSM as care. And that’s what He does when He takes over. He cares for me by lifting those burdens.

I look in the mirror, and I see a body that looks “normal” and that doesn’t reflect the way it moves through the world every day. I see a body that feels ways I don’t consent to, that beats me down and keeps it all invisible to the outside world. “Disgusting thing,” He says, pulling my eyelid up so I am forced to stare at my face distorting in reaction to what He does to me. He makes me feel seen as I am. He shows me that my body can lose, too.

I feel hopeless and alone after days of bad pain and so many hours in bed. I feel disconnected, and down on myself, and like He deserves someone who actually acts like a 20-something and who wants to fuck four times a day. He puts one knee on either side of my face, braces Himself on the wall, and fucks my entire throat until I’m gagging. I choke, I feel bile come up, I am forced to swallow it back, I meter my air, I cry. I stay put until He’s satisfied. “My hole,” He says, and His totally selfish objectification shows me that if He wants to make use of me, He can and will.

I am desperately angry at my fogged-up head and my aching everything, the way things have gone for me and all the opportunities I don’t even know I no longer have. I am sad, crying, again, again. He looks me in the eyes and slaps me. I focus so as to not flinch. He slaps harder. And the other side. Again. Again. Again. There’s no thought. There’s no space for it. There’s no room for feeling anything else. There’s red skin, and heat, and my eyes–unable to do anything but lock back onto His.

I like to believe the people in the valley that summer would have cared for me and lifted me with them had I gone as I am now, but I don’t know for sure. But even if they had—it would have ended. We all went home. We didn’t stay in touch, most of us. We spread back out across the earth. And the meditation retreats end. And the yoga teachers leave for better pay. And the prayer leaders impose their own morals. And the people who wanted to show you they hold healing energy in their palms grow frustrated, or move on to where they can feel successful.

But caring for people—doing what we can to alleviate as much as we can, which is sometimes distraction and sometimes commiseration and sometimes holding space for or even causing authenticity and catharsis—is not a class or a fix or a space. It’s a relationship, or a network of relationships. And sometimes it looks like what we can’t understand.

You see relationships of high-risk physical or emotional play and maybe that looks like breaking someone to you. But when you think outside of what is broken/fixed and sick/well, you start to see what is being taken away. What is being given instead. What care must be happening.

And it may not be healing. But it’s where my “feeling better” lies.

Jan

2024

Disability Pride, or something like it*

I’ve heard that by the time you ask yourself a question that starts with “Can I?” or “Will I?”, you already know the answer.

That may not always be true, but it certainly was when I posted a status asking people to define “disability” and then requested @forgottendancer elaborate on their perspective and experience about a year ago at time of writing. I was going on three years of pain then, and at every new physical therapist—I am now on my fifth—I would look at the survey that asked me “How difficult would it be for you to place a 25-pound box on a shelf overhead? Would it be: not at all difficult, a little difficult, somewhat difficult, difficult, very difficult, or impossible?” and try to figure out which of those answers best said, “Well, I could do it if you needed me to, but only if I knew I had a freezer meal or could order in for dinner, and only if I didn’t have any work to finish, and only if I really had to, because it would place me in bed for at least the following day if not more, and what does it mean to be able to do something, anyway, and if that’s what you care about, isn’t this actually a yes-or-no question, and when I worked in customer service our system counted any score on our 0-5 review system that wasn’t a 5 as a 0, and is the same sort of thing true here?” I had come to the conclusion by then—as well as the acceptance—that this wasn’t getting better, no matter which of the seven (!) diagnoses I had been given by then was right, and I was trying, best I could, to figure out what came next. In the short-term. In the long-term. In my life.

I added “disabled” to my Twitter bio.
Then I deleted it.
Then I put it back in.
Then I added it to Fet.
Then I deleted that one.
This happened like that for a comedically long while.

What I was feeling when removing and re-adding over and over again was… not shame, really, but some form of imposter syndrome, laced with a solid dose of ableism. “Can I say I am this?” is what I was trying to figure out, and no one could give me the answer, so I started off at “why shouldn’t I?” At first it was “I’m not really as disabled as other people” or “maybe I really am faking/overstating this and I just need to get over it,” but it was also “I can’t really be disabled; I’m 25” and it was “I can’t say I’m disabled; I still have so much I’m accomplishing,” and it was “I can’t be disabled; I’m happy.” All of that. Probably more. When it’s written like that, it seems so obviously ableist—or maybe it just does to me now, knowing all I know. But I really did think that, and so do many people. “I could never live if I couldn’t run,” we tell ourselves. “I would be miserable if I weren’t working.” “I could not bear to live this carefully forever.”

But I am living this carefully forever.

So I kept wrestling with it. And I kept looking at definitions. And one day, I just put all the bios back and exited out and that was that.

Soon after that happened, I bought patches to put up next to my desk. “Not All Disabilities are Visible,” one says. “Chronically Ch(ill)” says another. The next day, I brought an extra heating pad and my TENS unit to keep at work. Before long at all, I said it out loud, and then I began learning about disability justice and consuming all the content I could on it and advocating where I could, and joining into a worldwide network of others. Many had the same story as me, and even the same diagnoses. I recognized some on earlier parts of my journey. Some recognized me on theirs. I suddenly had a life filled with people who knew the things that the doctors didn’t give us enough attention to figure out, who had concrete advice on how to make cooking and writing and sex happen with all of this and how to do it well at that, who knew where to find the most stylish canes and the comfiest pillows. Over the last year I’ve become sincerely happy for the word/identity/community and don’t imagine I’ll ever keep a bio without it again. It’s important people know.

Now I’m told it’s Disability Pride month. And I’ve been wondering—do I feel pride?

Over this year, I’ve felt held in my new community, particularly in light of the pandemic. I’m surrounded by those who have a vastly different view of the world than what I was raised with, and it’s one I need right now. My old mantra—“good things come to those who work their butts off”—doesn’t fly anymore, because we all know it isn’t that simple. We don’t talk as much about productivity or long-term goals; life could change in an instant and we have mourned our goals before. We focus instead on personhood, pleasure, in-the-moment enjoyment, getting through. We nap. I once had a therapist tell me “you are not a human doing, you are a human being,” and I didn’t know how to just *be.* Maybe I still don’t. But these days, I admire the people I’ve met who do know how just as much as I ever looked up to prodigies and the prolific. In that all this is an accomplishment in shifting an engrained and hammered-home Western model of life, I can understand disability pride. I am certainly proud of being among other disabled folks.

But am I proud to be disabled?

I don’t know that that’s quite right—but in that “pride” may be the opposite of “shame,” sure. Though I still have times of hesitance and second-guessing, I identify as disabled and I do it fairly loudly. I declare it as a way of honoring my body, my limits. A thing that is held up and honored in the extreme haunt community as well as kink, there is something major to be said about that sort of self-awareness and the ability to say “this is where I hit a wall; this is where I cannot come alongside you anymore” and to ask/expect others to understand and even accommodate that. And there is something major to be said about showing everyone that mine, too, is a disabled body, and to challenging old communities to think more often of how to provide for *this* one, to wearing my brace and my heating pad and my TENS unit in public; I will not let something as insignificant as vanity tell me that I must be in more pain when I have other options.

I don’t know that “disability pride” is quite right, but in that I am disabled and I am proud of *myself*, sure. That’s important, too. I do spend a lot of time hating my body. Not for how it looks (though that is certainly not an experience I hold as any lesser in my mind for those who do) but for how it feels. For having been saddled with this. Of course I hate it. I am aware, every second, of how much it does not work. I do not acclimate to it, these feelings of pinching and burning and weakness and the new pain that makes me physically ill, the idea that standing too quickly makes me pass out and the ongoing need to do so next to a wall or a support, the fact I cannot plan ahead and at the same time constantly must. But I am still doing what I can to make myself a joyful person. I am more than this body. I was always meant to be. I am still reaching towards the peculiar and the extraordinary, the manic pixie dream girlhood that’s now about me and not *them*. I am still doing what I can to show my reverence for and obedience to my King, measured these days more in who I am over how much I do, and *He is proud of me*, and so how could I dare not be proud of myself?

I don’t know that “disability pride” is quite right, but it isn’t not, either. When I say it’s important that people know, I say that because telling people I am disabled is a form of liberation. It is a way of saying “nope, that isn’t going to be possible for me” without going through the entire traumatic story of my medical misadventures for the thousandth time. It’s a way of making it clear I’m not looking for their cure of yoga/CBD/positive thinking, or even of [insert medical procedure here]. Those comments still come, certainly, and there’s the hurt and frustration of being told I’m too young/pretty?/active to be disabled, but I can handle that, and then I know who to avoid. It happens faster this way, if it’s going to.

It’s a way of outlining my interactions from the first moment, just as I have had to learn to set boundaries in other areas of life *before* the problem happens. It’s freedom from lengthy explanation and letting people down. I’m disabled. I cannot and will not ever be able to give you a clear and definite commitment to that time, date, or activity level. I cannot and will not ever be able to guarantee rapid-fire deadlines. I am letting us both out of the awkwardness and inconvenience of last-minute excuses. I’m disabled and I cannot and will not attend your event if there isn’t going to be adequate seating or air conditioning, and I am letting us out of the drama of my fainting during your fun. I’m disabled, and I can’t be expected to do the chair-stacking and the banner-hanging and the heavy lifting and the all-nighters just because of my youth and verve. I’m disabled and I do not have patience for you speaking about you or me in terms of what we have/will accomplish alone. I’m disabled. I just am.

I’m comfortable with it now. That’s what I suppose I’m trying to say. As much as I am at home in this body, in my submission, in my wild and unfettered dreaming, I am confident and comfortable in telling you I’m disabled. That’s more than I was a year ago. I know myself and the world better for it, and *I* am better for it.

Happy Disability Pride month. I am disabled. I have pride. We’ll go from there.

*Note: I am not currently looking for any advice or suggestions of things-to-try. Thank you for understanding in advance.*

Jan

2024

When it comes to your body, seek experts for things you need experts in.*

Most of Fetlandia are not medical professionals.

Even if they are—because I know some rather excellent humans who are exceptions to that—they’re more than likely not your medical professionals.

And what this means is they aren’t qualified to give you the important information you need about your body and safety, no matter how much they have experienced, how visible they are, or how long they have been around.

I get a big ol’ frowny face every time I see someone pose to strangers online: “Can I do x during my wife’s pregnancy?” or “Is y safe with implants?” They can’t tell you these things. Your friends can’t. I can’t. And your kink presenter more than likely can’t, either.

The examples aren’t always that extreme, but that doesn’t mean they’re any less dangerous. Asking your friend “what stretches should I use to help this muscle pull?” or “am I strong enough to do this activity?” or even “is this how this is supposed to heal?” isn’t fair to your body, and it isn’t fair to them, either. When you do that, you put people in a situation where—if they give you advice you take, and then you end up permanently injured—they might feel responsible for your life. Not cool.

It’s frankly disturbing to me how often I’ve personally experienced this from people on this site. Yes, I’ve bottomed for a number of things, and I have talked to people who’ve bottomed for a number of things, but I can’t tell you if your body is up for that, and I can’t tell you if your recovery is normal. If I do that, maybe you don’t go to the doctor when you should, and then that’s on me. (And more than likely if you’ve ever asked me that question, I have indeed told you to go to a doctor even if I wouldn’t.) And yeah, I feel comfortable leading others in the stretching routine I use and talking about why it is the way it is, but that sure doesn’t mean I’m trained to teach you yoga.* And I can commiserate with you over chronic pain, but I can’t tell you what yours comes from or how you should treat it. I’m not qualified to do any of that, and you deserve more.

Now, what I can tell you is my own experience. I can tell you if something is in my risk profile and how I decided that. I can talk about what I’ve learned and how I’ve learned it. I can show you the routines and tests I personally use. I can share my experience with chronic pain and hypermobility spectrum disorders and tell you about how I got diagnoses, what has and hasn’t worked for me, and what I think of various doctors. But that’s about the extent of what I can do, or what anyone here should be doing. Don’t get me wrong: those conversations can** be super useful, affirming, and educational for everyone in them. They also aren’t even remotely equivalent to what a professional can do.

When you need an expert for something, ask an expert. Don’t ask a Fet forum. Don’t make it your status. Don’t text your buddy. And to take it a step further, ask an expert in the thing you’re wondering about. You probably wouldn’t ask your English professor friend to do your taxes, and you most likely shouldn’t ask your rope instructor, talented as they may be, to teach you fire play. Don’t put that burden on other people. Don’t take that chance with your body.

You only get one of these skin bags, just like anyone else. There are people out there who have studied and trained in the questions you have. They did that to help people. Seek them out.

And if you are answering these kinds of questions based on your personal experiences alone and posing it as fact?
Stop.

*The tea is that yoga studios pay the bills with yoga teacher training classes, many of which have no application process, and your yoga teacher also might not be well-trained to teach you yoga. But that’s another rant for another day.

**Emphasis on can—people with chronic illnesses often become others’ de facto medical information booklets, and it is pretty unfair/exhausting to ask people to explain what sucks about their health and why all the time.

Jan

2024

talking about chronic pain on the internet and what I do/don’t want when I do that*

Why do I talk about chronic pain and illness (and other stuff) so much on a kink site? IDK, because we’re very in touch with our bodies here. Because I’m vulnerable about other things. Because it somehow feels less attention-seeking than it would on my vanilla social media. Because the fact I bruise well and easily is likely related to my chronic illness and i’d like folks to stop glorifying it (sometimes.) Because you all understand the particular difficulties of having bodily limitations when your identity is connected to a sexual relationship, service, and the like. Because it’s real and it’s a thing that changed my life forever and I didn’t know for so long that it isn’t normal to be in pain every day and maybe other people will seek help if they do.

What am I looking for when I post about it? Really nothing. I just have to say things sometimes. I get words in my fingers, and you get the result. I endlessly appreciate the support and love you all show me, and tales of solidarity that make me feel less alone, and knowing who has been through what that I can ask for advice (when i want to and am ready.)

What I don’t appreciate at all is when people who don’t intimately know my situation tell me what I should try next. This is my body. I am the one living in it. Why do people think someone in daily debilitating pain is not exhaustively trying everything they can think of to stop it? It’s been suggested. I’ve tried it. This includes but is not limited to mindfulness, CBD, chiropractic care, yoga, physical therapy, changing my pillow, the oils your MLM just happens to sell, and fucking “positive thinking.” You aren’t giving me a revolutionary approach. I don’t need your holistic solution that I have definitely tried while waiting for doctors to believe me. I need a better healthcare system.

I get that people think they’re being helpful with their suggestions, but what it is actually saying to me is “I, a person on the internet, know your body and what will help it in a way you don’t.” It’s saying “I don’t believe you’ve tried hard enough to deal with this.” Right? Because letmetellyou, whatever you’re about to suggest has come up on one of the hundreds of nights I’ve sat in the bathroom crying at 3 am, googling my diagnoses and symptoms out to thirty pages of search results. I’ve tried. I promise. (If you think that paragraph was about you specifically, it wasn’t. You’re one of many, many, many people on the internet.)

As mentioned before, I’m not looking for anything. I just wanna complain, y’know? I do like knowing who I can talk to, and I also like being able to control that myself. Today someone messaged me “Let me know if you’d be interested in hearing about my struggles and successes with my chronic back pain.” Someone else who I complained to replied “Would you like my thoughts?” These things are nice and helpful and they tell me that people trust me to ask for and pursue what I need. Sending me your random advice does not.

ok, that’s the end of the rant. bye.