Shame and bodies and an amorphous sense of betrayal

[kaberett]

As We Know, there are a lot of respects in which I am entirely comfortable talking frankly and publicly about bodies and disease and the effects thereof.

There are also a small number of minor ailments and afflications that I'm fine discussing in the context of other people but I really don't talk about their relevance to me, because it turns out that I've managed to internalise cultural memes that say that they're things to be embarrassed and ashamed about. Not things that other people should be embarrassed and ashamed about, of course -- just me. Thinking about this last night, it occurred to me that the "problem", such as it is, might be that for the big things that are Wrong With Me my body is so far beyond what is Normal and Appropriate and so on that I just don't think those rules apply any more, and so I can ignore them and be kind to myself and to my body, which is, after all, doing the best it can. I don't think any of the big things -- the endometriosis, the connective tissue disorders, the migraines, the wonky brain chemistry -- are its fault. It is trying its best; we'll manage.

Whereas with things slightly closer to the parameters of "normal", slightly closer to "minor ways in which normal bodies go slightly wrong and get treated with faint societal disgust", I end up feeling profoundly betrayed and miserable and unable to cope, and consequently trying as hard as possible to ignore my body, which of course doesn't help anything -- so having said all this, I'm now going to actually talk about them briefly.

• Recurrent bacterial vaginosis (BV) has turned into a problem for me over the past six months or so. It's very common, a basically harmless if uncomfortable change in vaginal pH leading to a change in vaginal flora that reinforces the change in vaginal pH, the major symptoms of which are increased vaginal discharge, a change in scent, and for some people discomfort or itching. (I am giving details because I basically hadn't heard of it at all before starting to hang around vaginapagina, despite having grown up reading my mum's copy of Our Bodies, Our Selves, and more information is better information.) Common causes include overwashing (particularly using soaps anywhere other than the outer labia) and douching, neither of which are things I do; standard treatment is a short course of antibiotics, after which it (usually) goes away. Unfortunately it turns out -- and this I didn't know -- that another common cause is lengthy menstruation, which can knock vaginal pH out of whack and... there you go. After three rounds of short-course antibiotics I got booted up to someone more senior (who thankfully didn't try to claim that using a menstrual cup was to blame, despite the fact that this is a recent problem and I've been using it otherwise problem-free for... probably about a decade at this point) who joined the dots with the part where as of about -- you guessed it -- six months ago, my bleeding pattern changed such that I get 1-2 very heavy day at the start of my period and then a week of desultory spotting. So I got given a slightly longer course of antibiotics and some gel of an appropriate pH/composition to use over the last few days of my period, and we shall see how that goes, but mostly just -- ugh, ugh, ugh, this is incredibly tedious, and yes, I am feeling betrayed.
  
• In general I have sort of pervasively oily skin (which! does not seem to help with needing to moisturise my hands all the time! but never mind). What I hadn't realised was that the miserable sticky grey gunk clogging up my hairbrush even immediately after washing my sodding hair and rendering the entire thing a sensory horror I didn't want to deal with was... what happens when you combine dandruff with misc oiliness. Apparently. Based on the fact that the entire experience of embodiment is substantially less miserable now that I am using (OTC) specifically formulated anti-dandruff shampoo/conditioners. (I am contemplating the merits of asking my GP for a prescription for the stronger stuff given that the problem is improved not solved, and it's expensive, and I have a lot of hair, and non-specific "skin problems" are associated with hEDS -- but I think I'm probably going to hold off on that until I next see the hypermobility clinic, ask them if it might be related, and then talk to my doctor.)

-- so. -- please don't say "why didn't you say anything, I could have told you what would help!" or things to that effect -- I am still sort of curled up on myself and unhappily embarrassed about the whole *handwave* thing, and I am talking about it now. I share this (a) in the interests of commiseration (and "I have that problem, what I've found helps is X" minus the "you should have said" is fine) and (b) because I Didn't Know It, Maybe Some Of You Didn't And Will Find The Information Helpful, and (c) in any case I am working on the whole compassion-for-my-poor-body thing, and this is one of the routes to that I find helpful. And also, I suppose, thank you. ♥

Comments

[sashajwolf]

Thanks for talking about it! I get BV due to long periods as well (at least a week is standard for me.) I use the gel for a few days towards the end and find that's all I need.

I also have hEDS, and I've found my scalp does best if I don't shampoo it at all. When I first stopped using shampoo - many years ago now - I used to wash with hot water whenever it became too greasy or started to smell, although according to my partner at the time the smell was only ever detectable by me. Over time my scalp got its natural balance back, and now I don't wash it at all unless I've somehow got actual dirt in it, like mud or something. My hair looks fine, and there's no smell at all now. I get fewer split ends now, and my dandruff is much better, except during my period. My hair even copes with chlorine better than it did before, because the natural oils protect it. I do get the grey gunk, whereas I didn't before, but it doesn't really bother me; I just think of it as a natural effect of running a plastic edge over something that's supposed to have oils in it. I'm currently trying to reduce the amount of soap I use on the rest of my skin, although I probably won't get rid of it entirely unless AO Biome start selling in the UK.

[kaberett]

I have the horrible feeling I left "using the gel" a few hours too late this cycle but we'll see how it goes (and I now have a good sense of When To Start, at least).

I have periodically tried going no-shampoo (for periods of several months at a time); for various reasons it's not something that works out super well for me, though in fact I do notice a reduction in the grey gunk after about three weeks!

Thank you for the input; it's very much appreciated.

Anecdatum

[rydra_wong]

Re: the second one, there's a thing called seborrheic dermatitis, which is basically oily-and-flaky skin, especially on the scalp.

I have that or something similar on my scalp in a mildish form, and have got good results with intermittent use of Nizorelle shampoo (Nizoral is the same thing, just a slightly different percentage of the active ingredient, ketoconazole). While I'm at it, I'll also wash my face with it if my acne's playing up, as for me it seems to help with that.

(ETA: my acne is weird and has historically proved resistant to most of the standard things, except Effaclar Duo, so is not something to generalize from.)

(And yes, the gunk on the comb. Fortunately for me, it's one of those things I find pleasingly disgusting.)

Re: Anecdatum

[birke]

I have seborrheic dermatitis on my nose! The main way I keep it at bay is not touching my nose. Finger oils = bad.

Ketoconazole shampoo didn't help, but pine tar shampoo has, for some reason. My naturopath suggested it.

Re: Anecdatum

[kaberett]

I had been wondering about whether that might be the thing, yes.

Thank you for the recommendations: I've got stuck in front of that section of the chemist's a couple of times now; knowing that similar symptoms have actually been helped by it (because it's remarkably difficult to google this stuff, I have found) will hopefully help me get unstuck.

[davidgillon]

I suspect the big disabilities/illnesses kick in the door and force us to come to an accomodation with them. While the small ones just niggle away in privacy - I've had very similar embarrassed/ashamed thoughts wrt the current toe infection/granuloma (and the blasted GP's surgery still haven't rung me with the referral, grrrr!).

The BV thing I'll take your word on, not an issue my part of the species is equipped to deal with (multiple readings of that sentence encouraged). The oily skin, ahm, this. And could "skin problems" be any less precise? I've wondered if my skin counts for years without ever coming across anything to enlighten me. I do have dandruff issues as well, but I don't have enough hair left for it to be a major issue, but gunk on combs rings a bell. I'll be very interested to see what the hypermobility clinic says.

[kaberett]

I seriously spent about six months too embarrassed/upset about a Toe Problem to get it properly seen to -- finally had the minor surgery (which my GP practice can do in-house, thank goodness) laaaaast May? -- and the toenail's nearly grown back. So, yeah, I hear you on that specific one too.

I am looking forward to my next one-on-one session with the clinic, and having a growing list of "oops I forgot to mention that" notes to report back on ;)

[redsixwing]

Huh. I wonder if that pattern of "bleed like horror movie for 1-2 days; spot for 6-8 with occasional flares after" is a common thing linked to endo.

I sure had it, before they finally did my surgery, and I've read of people experiencing a similar pattern elseweb, too. (Also, this is why certain forms of hormonal birth control didn't work for me - they cut the horrorshow stage but extended the spotting stage until I had about one dry week a month. Not okay.)

Hooray for compassion for your body.

[shehasathree]

Huh. I wonder if that pattern of "bleed like horror movie for 1-2 days; spot for 6-8 with occasional flares after" is a common thing linked to endo.

Hunh. I wonder if that's what I was having, too.

[kaberett]

Honestly I have no idea -- it's something that (as I say) is a relatively recent development for me (I've been symptomatic with endometriosis basically since day 1 of my first period); I'm much more used to having 4-5 days of relatively heavy bleeding followed by a pretty rapid taper.

I kind of want to do a poll now...

[vass]

Grey gunk on combs, dandruff: same. It had not occurred to me that this might be one of the nebulous "skin problems" that might be an hEDS thing (it had occurred to me about keratosis pilaris, but I don't have a diagnosis for that OR for hEDS (IF I have hEDS, which... eh, maybe) and skin problems that aren't dangerous or painful are so down my list of things to worry about that I've never even spoken to my GP about that.)

A thing that makes combing my hair less gross is using a very wide toothed comb so the grey gunk can't get stuck between the tines. Judging by pictures, you and I have very different hair lengths and textures, so that might not work well for you, but I'm mentioning it just in case.

"it turns out that I've managed to internalise cultural memes that say that they're things to be embarrassed and ashamed about"
"I basically hadn't heard of it at all before"

Flagging this even though you already stated a reason why you've had embarrassment/shame around these issues: I don't know about you, but I have intense shame around having problems (medical or otherwise) that don't have names, aren't Known Things. Could that be a contributing factor for you?

[syntaxofthings]

Flagging this even though you already stated a reason why you've had embarrassment/shame around these issues: I don't know about you, but I have intense shame around having problems (medical or otherwise) that don't have names, aren't Known Things.

this. ugh.

[kaberett]

Yes, I do think that some of the embarrassment/shame was very much around not knowing how to search for this to find solutions (esp. with the hair).

The combination of anti-dandruff 2-in-1 shampoo-conditioner + Tangle Teezer is making dealing with my hair MUCH less vile -- especially, it's not now getting that horrible squeaky tacky feeling to it the moment I take a brush to it, and indeed isn't getting to that state at all in the week or so between washes it tends to go. This is a monumental relief and sufficient to get me to keep using the stuff (and to experiment with more expensive variants) in spite of the fact that, as I say, there is Misery and Shame associated with it.

Also hahahahaha on priority lists for GPs, yeah, that's why "my scalp making me miserable" has never been a thing with him.

[serene]

Just a note of solidarity, because I have the same skin problem, a recent bout of the BV, and currently, I'm on the way to the doctor for a mysterious rash of blisters on my hands that is making me feel like a plague vector.

[kaberett]

Ha. I hope it was diagnosable and is manageable; and hope also it hasn't turned out to be anything too tedious. x

[highlyeccentric]

OH the grey gunk stuff! That makes *sense*. In my case, because I have oily skin but I didn't know I had a dandruff issue until I buzzed my hair off*. But when my hair was long enough that I used brushes, or with certain styles of comb, yeah, grey gunk! So hard to get rid of! Used to be okay to remove because it'd come out when I pulled out the matted hair from the brush, but that doesn't work so well with combs or with shortish hair. (Style of comb seems to effect the outcome somewhat? As does whether or not I'm using product - currently the gunk is mostly because I'm applying gel and THEN combing the hair into position.)

*Well, the dandruff got massively worse when I moved to a hard water environment, too.

I can praise the wonders of buzz-cuts for decreasing the amount of Cope needed to deal with hair, but it's not great for dandruff management, alas (unless by management you mean 'getting out of your head and onto everything else').

[highlyeccentric]

Also, if it makes you feel solidarified-with, I have also been embarrassed by the grey gunk! My housemates in Syd never seemed to have grey gunk in their hair supplies, and this is one of the cases where I could never figure out if it's that I *fail at cleaning the thing* or something else. My mum used to soak brushes and combs in hot water, but I have never managed to make that effective against the Grey Gunk.

[rydra_wong]

I can praise the wonders of buzz-cuts for decreasing the amount of Cope needed to deal with hair, but it's not great for dandruff management, alas (unless by management you mean 'getting out of your head and onto everything else').

See, this does actually work for me as management (and is one of the many reasons for having short hair cut mostly with clippers), because if it's on the comb and other things, it's not on my scalp causing me sensory aaargh.

[tree]

i combat the grey gunk by just not brushing or combing my hair. this is not something that's an option for a lot of people, though, i know. having dead straight, relatively short hair helps. i only wash it twice a week and try like hell not to touch it (until wash days, when i'm allowed to touch and pick at my scalp as much as i like), and that seems to help with not-spreading the gunk as well as it not looking super oily.

the odd truth is that the best thing i've found that helps is bleaching my hair. possibly because it just destroys everything and just when my hair/scalp has started to recover it's time to bleach again. lots of effort required, though (which is why i stopped), plus stinky, burning chemicals which most sensible people steer clear of experimenting with on their skin.

[birke]

What do you use for the bleaching?

[ewt]

I also experienced reduction in scalp issues when I was dyeing my hair bright purple/pink, which did in fact require bleaching it first; but I put this down to "living somewhere with a shower that actually rinses better". Hmm.

Henna has also helped, but seems to remove significant amounts of curl from my hair (but not enough to make it straight; my hair is not really properly curly but it also is definitely not straight. It's... my hair is queer, okay? and so it always tangles very fast), and at the moment I'm avoiding it because I might want to go pink/purple again at some stage and can't very well do that if I've been using henna.

[shanaqui]

What gel are you using? Was it prescription only? I buy some gel via Amazon, which gets expensive, so yes, if you would tell me that would be good.

Also so much understanding of the unhappy embarrassment and bodies and betrayal and just, yeah. ♥

[kaberett]

I'm using balance activ and Firmly Intend to get my GP to write me a scrip for it once I have determined whether it Works Adequately for the problem I'm trying to solve.

(This is in part because I get free or pseudo-free prescriptions, so get absolutely everything I possibly can prescribed. It might be less useful for you.)

[syntaxofthings]

Major agreement on sharing things because I Didn't Know It, Maybe Some Of You Didn't And Will Find The Information Helpful. I've been mentally debating my own skin problems the last couple of days. Like, is eczema on my scalp a thing? Is that why my scalp is super itchy lately? (Grey gunk! I have that! I don't understand it!) Why is my face SO oily when my hands are SO dehydrated, itchy (from eczema), and sensitive to products? Is my face actually oily? What's going on? I'm so confused, don't people just have ONE skin type and isn't mine dry (because of hands)? And WHY DOES MY SCALP ITCH SO MUCH??

Bah. Skin problems. Also bah: vaginal problems. I am so, so hoping that now having a hormonal IUD is going to stop all of my own problems.

[tree]

random unsolicited drive-by comment from someone who also suffered from oily face: try more oil! my skin didn't stop freaking out until i started using rose hip oil as a moisturiser and cleanser about ten years ago. jojoba is also good or even vitamin e oil. but make sure they're 100% oil and not mixed or diluted in any way. everybody told me to use oil-free astringent things and i tried everything from over-the-counter to prescription products; i even went on hormonal birth control. that helped a little with the acne but did other terrible things. anyway, another school of thought says overproduction of sebum is caused by the skin thinking it's not producing enough, and if you give it more, it will eventually figure out that everything's okay and dial it back. obviously, it doesn't apply to everyone but if you're at last resort stage it might be worth a shot.



also, yes, eczema on your scalp is totally a thing. sympathies from a fellow eczema sufferer. (itching could also mean seborrheic dermatitis or psoriasis or an allergy or not enough humidity. skin is so complicated.)

[karen2205]

[lots of TMI in this comment]

Hmm, that's interesting re what you're saying about BV - I've always had periods that last about a week and at the moment experience a slowish start followed by a period of 48 ish hours of heavy bleeding - involving clots, bleeding onto bed linen/my armchair and then a more normal level of bleeding for the rest of the week.

I've never been sure whether my intermittent vulval itching/redness was caused by thrush/BV/general sweating, but knowing there's a link between long periods and vaginal pH is helpful. [I know you can now buy test strips to check vaginal pH levels, but the ones sold in Boots are expensive and I've not gone looking online for a cheaper supplier].

I have had dandruff for ages and even get it in my eyebrows. I like coal tar shampoo [I haven't found any generic version yet - I like the consistency of Tgel, I like polytar plus, which is a bit runny, I like alphosyl (sp?) which is more traditional shampoo in consistency) on my scalp - this is a subjective 'it feels nice and like it's cleaning my head' and tend to use it in preference to ketaconazole shampoo, though I don't think there's anything to stop you alternating between them - which I do sometimes too.

I virtually never brush my hair when it's wet, but go to bed with it wet and brush it in the morning when it's easier to brush cos it's by then only damp.

[shehasathree]

This all sounds really similar to my experiences. All of it! Except coal tar shampoo; i haven't tried that before. I'm not sure what all the scalp things i have going on actually are, but i try to wash my hair about once every 3-6 weeks, if possible. (i comb through it more frequently, but not every day - if it's up in a plait or bun it doesn't get tangled and it seems to help with the scalp issues as well.)

[thatyourefuse]

Hilariously combining the two subjects, my girlfriend spends a lot of time on long-hair messageboards, and apparently there are people out there who swear by liberal applications of [Monistat/miconazole/whatever the hell they call OTC yeast-infection ointment in your area] to the scalp. I do not intend on trying this, not least because the damned stuff makes me violently nauseous when used traditionally, but I offer the data for whatever use or entertainment value it may provide.

[shehasathree]

\o/
Once again my weird personal hygiene habits are vindicated! (I also figured out talcum powder/cornstarch as a dry shampoo before Dry Shampoo was much of a thing.)