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Longtime VPers may already have a basic -- or extensive -- understanding of what endometriosis is. (If not, Endometriosis.org has some good background information.) And some may also be aware that we're at the beginning of Endometriosis Awareness Week or Endometriosis Awareness Month, depending on location.
During this time, there are often a lot of "endo 101"-type posts -- which are certainly fine and helpful in their own right, but which don't always get at the substance of what it's like living with endo. This year, we'd like to start a conversation about some of the subtler ways endometriosis impacts people's lives.
Tori: To start with, one thing that's surprised me about living with endo is how many small public coping mechanisms I've developed. Not to keep me in less pain, but to keep other people -- out in public, less so with close friends and family -- see that I'm in pain. For example, one of the body positions that helps me work through sharp, sudden pain without passing out is a squat. In stores and such, I've gotten really good at dropping into this really fast -- like all of the sudden, I just absolutely need to see whatever is on that bottom shelf.
Alex: Yes, absolutely! Learning how to do the very controlled fall so subtly that other people don't notice what's going on even when they know you is just something that had... kind of faded into the background for me.
I spend a lot of my time in really social-activist-y spaces, where people very commonly use hand-signals (like the BSL for applause to indicate approval, so you can glance around a room and see how many people agree without having a cacophany; or the BSL for "T", meaning "technical point", which can be anything from "I'm putting the kettle on" to "excuse me, have you noticed the building's on fire"), so one of the thing's I've done in collaboration with these groups is developed a hand-signal for "I'm having a pain spike and am checking out of the conversation temporarily; you don't have to do anything, but I'm not going to be following the conversation so you'll need to give me a precis when I'm back."
In turn, though, this highlights something I didn't even realise until about a year after my diagnosis (so, seven years after I started displaying symptoms) -- just how much of my life I'd spent living in fear of pain, at that point. Because I'd spent so long with so many people telling me it was "just bad period pain", I was convinced I ought to be getting on "as normal", and not struggling as much as I was -- so planning my life as though I wasn't significantly impaired by pain, and then feeling awful about needing to play catch-up and how exhausted I was by the whole thing. And having realised how scared I was - and that being perpetually terrified of being in pain was eating up a lot more of my life than the actual pain was - I learned to anticipate it, instead. Like, to actually plan my life around my average capability, rather than around my absolute best, and to have genuine fall-back plans for if time-critical stuff just was not going to be able to get done, because of how unpredictable this wretched illness is. Oddly enough, I find that way less stressful.
Tori: I'm still amazed by planning in general. That is, the amount of planning I put into living life while managing endo. Like today -- a moderately bad pain day -- I got a rather last minute invitation to attend a friend's partner's show in town. And for a few moments, I sort of panicked. I wanted to go, for any number of reasons -- because it actually sounded interesting and entertaining, because I didn't want to disappoint my friend, because I wanted to prove (to myself, to my partner, to society at large) that I could actually go out and *do* something social and enjoyable. Only, the invitation didn't state what time the event was, and I *know* I'm significantly more likely to become fatigued as an evening goes on. Like, the difference between 6pm and 7pm or 7pm and 8pm is ginormous in terms of what I can enjoy or do or tolerate. In terms of how social-type events work in my community, this means that there are a lot of times when I'm stuck between being left out of a gathering due to start time or else pushing through something *supposed to be enjoyable* even when I'm not really up for it, because I want so much not to be left out.
Fortunately, this show started at 5pm -- so great for me!
Even so, I don't go out without a plan. I asked my partner to drive (a simple fix when I'm going out with him, less simple when it's a work or other type situation). I wore one 8-hour heating pad and packed a second (considered wearing my TENS unit instead, then gambled on thinking it wouldn't be necessary). I brought the next 2 doses of planned medication (neither should have been necessary during my time out, but I like to be prepared) as well as one dose of my "fuckitall" (i.e., narcotic) medication, in case pain spiked from where it was. Once there, I noted water (for pill taking) and restroom capabilities, as well as what would need to happen if I needed to make an early exit from the venue.
All this is certainly manageable, yes. But we're talking about one optional, low exertion, and rather well timed event. What gets to me more is the required planning that comes day after day after day for events that are much more mandatory (going to work, purchasing food, etc.). What gets to me far more is the planning required to make it through non-optional activities -- and to do so day after day after day. It feels like anytime I try to do anything even "ordinary," there are approximately one bajillion subtle planning and monitoring procedures that... I just don't even know.
Alex: Oh goodness, yes, the pain-management-planning.
I carry with me at all times what looks like a fairly normal/usual small handbag... but it doesn't contain keys/wallet/etc. Instead it's more-or-less a first aid kit: spare ibuprofen and paracetamol (the
former for people-who-aren't-me, the latter VERY DEFINITELY for me); diclofenac gel; my TENS machine and spare batteries; emergency blood sugar; codeine; diazepam... and to very great extent, I carry this everywhere just because it makes it easier for me to leave the house: I know that one of my steps is "pick up this bag", and beyond that I don't actually need to think about what extras to take with me. (I keep
all my daily meds in a per-day dosette box, so I've always got my usuals on me -- it's just not wieldy to carry around that many individual cartons of meds.)
But also, ugh, the human side of planning things. I'm really lucky that I've got a lot of friends to whom I can say "I'd love to, but I'm having a medium-bad day so in order for me to show up I'm going to need additional care xyz", and they will tell me honestly whether they've got the cope for that, and if they haven't it is fine.
Of course, this is all short-term stuff - I also keep an extremely close eye on where in my cycle I am, or am going to be (so far as I can tell, with the irregularity) for planning ahead -- because a gig in two months'
time might be a thing I'd give *anything* to go to, but if it falls on the first day of my period there is no point spending the money on a ticket I won't be able to use...
Tori: When it comes to the human side of planning things, I didn't realize how often I'd need to ask for some kind of professional or social accommodation. (Part of this, I think, has to do with the duration of one's menarche-to-menopause span. If I ask for some kind of accommodation once every 3 months or so, that is still, over the course of 40 years, something like 160 accommodations. And I'm pretty sure I feel like I need to ask way more often than that.) Or how anxious I'd be about it. Or how much I'd resent doing it.
Not that I resent other people -- friends, acquaintances, coworkers, supervisors -- for doing or not doing. (Okay, I'd resent a supervisor not providing a reasonable accommodation -- if that had ever happened, but it hasn't.) And I try to be nice to myself for needing to ask. But I resent the exchange all the same. Because it very clearly highlights the power dynamic in the relationship, and that is not a comfortable feeling.
Alex: Oh goodness, yes, the humiliation and the subservience and the sheer feeling of threat.
And I kind of still get it every time I see a new doctor - it's worse with my mental health stuff, to be honest, because there I can sometimes *see* them dismissing me & my medical expertise as "crazy" - but I still
don't treasure the evening I spent in agony in A&E, trying to persuade the doctor who'd been assigned me that I needed to see the duty gynaecologist. He kept trying to tell me that I'd sprained a back muscle; it was only after the third or fourth explanation by me (& the friends I had acting as advocates) that we got him to take "I have severe endometriosis, my anatomy and pain signals are a disaster" seriously. When the duty gynae did show up, we at least managed to have a pretty competent conversation - the pain had died down by then, so I was able to talk in complete sentences/sit up again, and she kind of gave me that look -- you know the look? Yeah. So I told her that I'd come in because of the risk of ovarian torsion with necrosis, but given that the pain had died down I was going with ovarian cyst. So she gave me the other look, and said "Are you a doctor?" "No," I said, "sorry. Volcanoes." "Hah," she said, grinning, "you're the kind of patient we hate." And proceeded to apologise for needing to carry out a full examination anyway.
But there was also the time in A&E (I was having serious issues with the interaction of my endo + my Mirena) where the duty gynae was not taking me seriously at all until we got to the point where she was having the Obligatory Rummage in my cunt. "Hmm," she said, after a bit, "do they normally have trouble finding your cervix?" Absolutely off my face on nitrous + pain, I paused, and said "left a bit." Whereupon she started
treating me like I was competent.
And, you know, it makes a good anecdote - but I shouldn't HAVE to have this level of specialist knowledge in order to get appropriate, timely care, and that just infuriates me. Related is, of course, the thing that
keeps popping up, of non-specialist healthcare professionals still it'll show up in ultrasound, both of which are staggeringly false...
I mean, don't get me wrong, I was really lucky with my old gynae, before I moved town -- he 100% trusted me to accurately summarise my notes for him (and occasionally pulled this out as a party trick, to the complete
horror of student medics observing our conversations), but that has also kind of spoiled me, because I expect to be treated as an equal by my HCPs, and that... really, really isn't always the case.
Tori: I hate HCP anxiety. In a nutshell, I hit an awkward combination of pay-to-access care (I'm insured, but not that well insured), income restrictions and managed care (so I cannot afford to see anyone who's not on my plan), and geographical distance (so I can't *get to a lot of HCPs who might otherwise see me) that makes working with a health care provider a relatively emotionally fraught issue for me. I have more or less exhausted the most likely possibilities in my basic geographical area.
That said, one thing that has surprised -- and amused -- me regarding HCP dealings is how often I wind up explaining potential pain medication ungoodness to my health care providers. Sometimes it's subtler. Like, I had one doctor want to prescribe Vicoprofen (hydrocodone plus ibuprofen) to me. And I had to go, "You want me to combine the NSAID -- which I take regularly and preemptively -- with the narcotic -- which I take only as needed and as little as possible? I'm not sure that's the best idea." Or sometimes it's a bit more obvious -- I think -- like why it's not a great idea for me to take the muscle relaxant and the opiate at the same time.
And, of course, this is where the conversation goes incomprehensible to folks who don't have that same level of interaction with those particular sets of meds.
Alex: Hah, this is more about chronic pain than endometriosis specifically, but -- one of the things I find perpetually darkly amusing is that I've started carrying ibuprofen and spare paracetamol at all times. Not because I can take them -- I can't -- but because people know I take a lot of painkillers, so if they need some & don't have any I'm often who they come to. And, well, it's nice to be able to offer something other than neat codeine from my own spares!
The thing that really got me down today is how unpredictable it is, though -- like, I was walking along fine reading my book (Redefining Realness by Janet Mock -- seriously recommend it, but it comes with major trigger warnings) and then all of a sudden, bam, shooting pains from my hip to my ankle every time I moved my left leg. I can't see that I'll ever get used to this.
(And the housing market in London is such that I've ended up in a basement flat with stairs to narrow to get my wheelchair up or down unless I break it down into three different sections, necessitating that many trips up & down the stairs, which means I'm using it much less than I ought. The trade-offs are... really not a huge amount of fun.)
Tori: I do hate the unpredictability. I feel like I should somehow be better at this by now. Where "this" means both handling having a menstrual cycle, a process I have been experiencing for over half my life, and managing my endo. None of it is new to me -- and, like we already talked about, endo life planning already consumes a fair amount of mental and physical energy. When I put so much effort into trying to account for as many aspects of negotiating daily life as I reasonably can and then -- WHAM! -- something hits that didn't account for, it's easy to feel like what I'm dealing with is, at least in part, my own fault. You know, because whatever I did, I didn't do enough.
And while that is one example, I think it illustrates what I want people to know, more than anything, about endo. The physical issues are the surface. Each one, each day, can be tied to so many mental, emotional, social, financial considerations. I hate to end with a cliche, but it really is like the tip of the iceberg.
Even with all we did talk about here, we realize there are a lot of facets of endometriosis that we didn't begin to touch on. In the same vein, not all of our experiences are going to be shared by everyone with endo. Endometriosis can manifest in a fair variety of symptoms, and how people react to those symptoms can be quite individual. We did, however, want to start a conversation about endo that goes beyond just a "What is it?" baseline.
So, VPers, what's been your experience with endometriosis -- whether you have it personally, whether you're close to someone who has it, or whether your primary experience of it comes from communities like VP?