So I struggled with a lot of relationship anxiety and I haven't ever really hidden the fact that a lot of it comes from my disabilities and the ableism I've faced in relationships and from just society in general.
Like I have definitely posted before about the fact that one of the common fights in a previous relationship was that I was so infantilised by society as a wheelchair user that my ex felt judged for being with me because I looked young and small and was in a wheelchair and people constantly stared and made comments and he got dirty looks when kissing me (which he assumed was bc I look like I could potentially be a teen at 21, but I couldn't get him to wrap his head around the fact that no, people are actually judging you because I'm disabled and they think you're 'throwing your life away' by dating me... which is something that still infuriates both of us now that he has wrapped his head around the fact that, that is still how I'm seen and he gets it a little better).
But something that's coming up in my newer relationship which is a lot healthier than anything I've really had before and is someone who's really only known me as disabled and has been around the disability community enough that the everyday ableism I would get from others just isn't an issue...
Is the little things that aren't exactly unique but are things that I have only ever discussed with other disabled people.
Like I can discuss the impacts of my stutter and the seizures and the fainting pretty publicly, because I do that all the time and it's like never been an issue, it's seen as socially acceptable and important to talk about by abled bodied people.
Because they see it and they recognise that it could happen to them easily and they want to help (generally) and also it regularly gets used as inspiration porn and is a thing.
But the things I struggle with, even knowing that I will eventually-inevitably have to have these conversations with someone other than my QPP, is the aspects that I don't see talked about offline very often if at all.
Those of us in forums reading and sharing tips on how to deal with varying levels of incontinence, how to handle and help gastroparesis, how to manage when your muscles don't work well and you have to physically manoeuvre your body to just get your body to function slightly normally...
But no one really has advice on how to tell your partner that... like mine follows my tumblr so will see this and probably send me reassurances because he's a sweetheart and I know he really won't mind and will not be surprised at this (both by what I struggle with and that this is how I dodge my usual awkwardly bringing stuff up right at bedtime so I can talk and sleep before my anxiety hits that I did a scary thing)… but I don't actually know how you tell someone this stuff.
Especially if it's someone who you want to spend your life with and live with.
Like I like being blunt and if it was public speaking about disability with strangers or about my book I could absolutely say 'Yeah, my muscle deterioration and the loss of control from my FND got to a point where I don't have full control of my bladder or intestinal system. They just don't really function on their own; so I have a full on daily massage routine that I have to do basically a couple of hours after every meal because my body doesn't like to do it on it's own and I don't like constantly feeling like I'm going to throw up and then being incredibly constipated when it does decide to start functioning again.'
Or that with that comes 'Oh yeah, sometimes I literally have to massage and push on my bladder to pee and there's a whole method to it and it's really important when my muscles stop working so I don't get a UTI, liver or kidney infection.'
Or the ever fun 'One of the most important things I ever learned from a group of cis women with spinal injuries is that you can feel through your vaginal canal where and how much 'waste' is in your intestines and sometimes literally push it down like that if you have limited muscle control and don't want to deal with other methods'
Like; I don't talk about those outside of like two people. I also don't talk about how much planning goes into sex because of those things and how much pain I can be in if that routine is thrown off or if my diet changes suddenly or how expensive the actual food requirements to not be in pain all the time is because I need an extra high fiber, liquid diet sometimes when the flares at the worst.
Or that the real reason I'm addicted to coffee is because it helps with the gastroparesis way more than it helps the ADHD or sleep deprivation issues.
Or that I stopped eating as much meat because it was actually getting too hard for my body to digest and now I'm seriously afraid of protein deficiency and iron levels because those are two things that I know will 100% fuck me up and I can't find high enough options and I really can't afford tofu and am often allergic to the cheaper options because of my chickpea allergy bc that's vegan/vegetarian foods main protein extra. (I have major frustrations with how many things across the board use chickpeas)
Like; needing a specific kind of diet is hard and I try my hardest to not have to ask for help because I'm stubborn but also because I'm absolutely irrationally terrified that I'm already asking too much (not a single person in my chosen family would give me shit for being high dietary needs if I chose to be more honest with my struggles, but it's still a fear from toxic people in my past that I will become too much for things out of my control).
And this impacts every day of my life right, so I have tried to share this with long term partners before… particularly ones I was planning on living with and both said 'why tf do I even need to know this?'.
And like, back then I was too hurt and heartbroken from the shame of trying really hard to be vulnerable to be shut down in harsh ways that were quite frankly cruel.
But like; it's information that should be known. If I'm in hospital, that's very important information if I'm unconscious and will be unconscious for a while. It was a conversation my QPP and I had when discussing who would be pregnant that we've literally never let the other polycule member and coparent into that part of the discussion of ~how much my disability impacting pregnancy could happen~ because I was too embarrassed and burned by my past to talk about these things with him around.
Like the reality of my disability has been changing pads and tampons in bed crying in pain back when I had a period, while I'd been bed-bound without a wheelchair or mobility aid and I hadn't pee'd in several hours and knew I was risking a uti and bladder infection but literally had no choice other than trying to keep up basic period care. Or when my muscles fatigue and spasms got so bad I was spending nearly $50-100 a month on overnight pads because of incontinence and periods and I threw out the reusable environmentally friendly ones bc despite me not having allergic reactions to them cleaning them was not an option when you can't even get up to shower or pee.
Or the only reason I stopped trying to push for a pelvic floor specialist or getting a catheter at that point was because the receptionists and ultrasound techs when I went for a scan of my bladder made me feel so ashamed for not being able to have a full bladder ~despite needing it for incontinence being on the form~ that I actually stopped asking for help for anything that might involve an ultrasound until my IUD required it... and even then I have panic attacks every time and refuse to go within visual distance of the one that gave me hell.
And these are just normal routines for me until I'm with someone and then suddenly I don't want to admit that I lay down and have to do a whole routine just to have a functioning intestinal system because that's a whole portion that just never really functioned well even when I was a kid but actually most of it was after the assault in 2018. And in 2020-2022 I finally learned how to manage that.
I use to panic at the idea of living with anyone other than my QPP bc especially if I shared a room with them, at some point I would actually have to be vulnerable and actually incorporate my daily routine around them (the moment I realised that I could actually see myself being that comfortable and safe with my current partner despite only being together almost 5 months I cried for a while as I wrapped my head around it bc it was not something I ever expected to feel).
One of my main reasons for actually wanting my own bedroom and not just an office space when living with partners one day was because I wanted my own space to live without having to fight anxiety about a partner witnessing the full extent of my disability... so realising that I would be okay with someone seeing that part of me especially after having it used against me by people in the past is a big deal.
It means I have to let someone potentially see the scars, that they will see me at 2am in pain when I'm in a flare and gastroparesis is at worst it pulls at and tears the internal scar and brings flashbacks and extreme pain where I can't move.
It means that I have to be vulnerable and trust them when my hand stops working, when my legs and feet cramp up in pain, when I have a seizure so bad I can feel where my previous fractures were and where the bruising is along my spine and hips and I just can't with the world, or when my insomnia gets hit with hallucinations and suddenly I ~need~ to absolutely cling to them because it's kinda hard to ground myself when even though I know that it's not real the hallucinations can actually be terrifying and I crave that feeling of groundedness that comes with holding someone safe and knowing they have me.
And that's scary, disability is scary, not just because it's hard and isolating, and pain and inconsistency is terrifying to live with; but because those people you have you have to trust fully and when you commit to something or someone you have to have such a high level of faith in them because you know how vulnerable you can actually be even if like me you tend to be really good at faking being okay and tough (and I am tough, I've survived a lot, but that fake bravado I put on in public and sometimes one on one is absolutely a survival mechanism as well).
Relationships are hard and no one prepares you for the conversation's because they're so hard to have and honestly, people hate having them. And there hits a point where your disability needs you to be blunt and honest however you can and sometimes you just need people to shush and listen without interrupting you because you are so used to being talked over and not heard that you just need to know that they're willing to hear you and what you're saying, not what they think you're saying or what they want to hear, but the actual blunt words out of your mouth...
And like one of the reasons why I wanted to write my book has actually been one of the hardest parts in writing it; to the point one of the reasons it's taking this long is sometimes while researching and typing is I have to stop and cry and have a nap, because it triggers anxiety in me about the conversations I hate having where I ask for accommodations in sex and life. I want this book so badly because I would've done almost anything to have a book where I could just highlight sections that were relevant, hand it to them and say 'come back to me when you're done and we'll talk about it because I need us to be coming in with similar understanding at least.'
Because I hate having to think about 'do I admit why I'm in pain or do I just say there's pain and maybe ask for a change or activity, do I need to stop, have I pushed too far and hurt myself if I'm only just noticing pain bc I have a high pain threshold' and then the fucking mental work in intimacy often leads me too burnt out for continued intimacy because I'm so stressed that I activate a panic response and then I just need to stop and have a nap and probably a frustration cry. (I cry a lot, I'm not ashamed of it, because it's healthy, but my brain is really good at making too many chemicals and needing to cry them out)
And these are everyday issues for so many of us, constantly battling relationships and study and trying to find our versions of happiness and success and love and acceptance; but also balancing the mental load of our disabilities, feeling like we have to do it alone and struggling and searching for each other's advice and guidance and comfort and compassion because we don't get it offline or it's harder to find offline.
And the problem isn't actually with our symptoms or our strategies; all bodies are bodies and sometimes our bodies just do or need weird shit to function... but the actual problem is the level of shame and how many topics are blacklisted and squeamish for people because they don't want to talk about it.
When I found another tumblr blog here that was someone with FND talking about struggles with incontinence, I sobbed for hours knowing that finally I wasn't alone and someone had advice and brands and was talking about their struggles with it and I was finally getting real help bc google was awful at getting me advice. (Seriously, facebook groups, tiktok and tumblr have done more for my disability health than all my medical professionals and google combined)
Shame is such a shitty emotion, like guilt and shame I get right, they have purpose within community building and providing safety etc; but shame itself the kind you get for just existing and people being weird about it... it cuts deep.
Like growing up afab the whole 'girls don't poop' thing was weird to me but also really mentally unhealthy for me and added a lot of confusion and shame to actual medical signs something was wrong with my digestive system... which may also be the autism and not understanding that's not meant to be taken literally in any capacity... but like; despite my mother working in medical fields before I was born, I grew up with so much stigma around human bodies and their functions, that I didn't know when something was actually wrong. It literally took the internet and the new ways I was disabled at 19 to learn I had been not normal and not healthy for years.
That food intolerances were actually a problem except it wasn't so much intolerances it was years of trauma had actually created so much stress on my system that certain muscular systems hadn't been able to work properly and I then had to learn what tf to do with that.
And this is also a post to get me back into writing my book because if it's said the shame is gone and also because after the conversations I've had with my partner last night and over the weekend I'm actually getting comfortable enough to say this stuff without the fear of being hurt by it later.
But this is mostly a 'this is a thing' post and it's hard and sometimes it's lonely and it's scary; but none of us are fully alone in this and there's nothing to actually be ashamed of even when our pasts and communities and media sometimes make it feel like it. And living as we are is brave, not just because living in general is hard, but because how we have to fight internalised ableism and fears of others every day while necessary is also hard and we're stronger than we give ourselves credit for because we forget how much energy we use just to survive.
