Impact of social support on the relationship between illness invalidation and shame among individual

[JaimeS]

I just explained to my partner about how he should apparently come with me to medical appointments, instead of my (female) support workers, and how we should both dress up as much as possible. He said, "My love for you is so great that I will even wear a tie." Bless. (He hates them.) I don't know how to put on makeup any longer, would putting my hair up smartly and wearing a bit of jewellery have the same effect? I'm 37 but frequently taken for 5-10 years younger, and being short doesn't help either. I'm worried that if I turn up having made a lot of effort with my appearance, they will think I'm faking illness because I was able to do that. I have a huge amount of trouble getting taken seriously by doctors.

Makeup that is simple and basic is good; 'looking' very ill without any biomarkers really just convinces people you're depressed, that you don't look after yourself. I mean, if you look miserable / ill / exhausted and nothing in your bloodwork SAYS you are, then clearly you are 'simply' depressed.

Ugh.

The entire thing is one, giant paradox.

@Calathea - very simple to follow, promise. Light brown (one or two shades lighter than your skin tone) over the whole lid. Teensy bit darker on outer 1/3 edge. Shiny/paler/shimmery on the inside 1/3 edge. Blend a heck of a lot.

If you're feeling adventurous, take the darker color and apply just a tad bit of it just above where your eye opens and closes (#3), and a bit of the lightest color in a slender line beneath the 'wing' of the brow (#1). None of these should be as thick as they're drawn, but especially not #1 or #2, which should be very subtle.

It might sound complex but it takes two or three minutes if you have the colors beforehand. Eyeliner optional. VERY optional. If you're not used to applying it, it goes everywhere in a jagged, horrible black smish of doom. Worse than glitter.

Oh, and if you also want it to stay where you put it, you need Primer Potion on, first. Urban Decay makes it. It's like magic. Nothing ever smears. If you apply that below the eye, too, and wait a minute for it to dry a bit, and apply face powder, your black circles will also disappear... but that might be overdoing it a bit.

-J

 

[SOC]

I'm worried that if I turn up having made a lot of effort with my appearance, they will think I'm faking illness because I was able to do that. I have a huge amount of trouble getting taken seriously by doctors.

Frankly, we're in a no-win situation with doctors who want to believe ME is a psychosomatic illness... or even ones who don't want to work hard enough to figure out what they could do to help us. If we come in looking like we feel -- death warmed over -- then they label us depressed, not physically ill. If we come in looking healthy, then we can't be really ill. It's far more about their preconceptions and ego than it is about what we look like or what we say. Sigh....

 

[MeSci]

Makeup that is simple and basic is good; 'looking' very ill without any biomarkers really just convinces people you're depressed, that you don't look after yourself. I mean, if you look miserable / ill / exhausted and nothing in your bloodwork SAYS you are, then clearly you are 'simply' depressed.

Ugh.

The entire thing is one, giant paradox.

@Calathea - very simple to follow, promise. Light brown (one or two shades lighter than your skin tone) over the whole lid. Teensy bit darker on outer 1/3 edge. Shiny/paler/shimmery on the inside 1/3 edge. Blend a heck of a lot.

If you're feeling adventurous, take the darker color and apply just a tad bit of it just above where your eye opens and closes (#3), and a bit of the lightest color in a slender line beneath the 'wing' of the brow (#1). None of these should be as thick as they're drawn, but especially not #1 or #2, which should be very subtle.

It might sound complex but it takes two or three minutes if you have the colors beforehand. Eyeliner optional. VERY optional. If you're not used to applying it, it goes everywhere in a jagged, horrible black smish of doom. Worse than glitter.

Oh, and if you also want it to stay where you put it, you need Primer Potion on, first. Urban Decay makes it. It's like magic. Nothing ever smears. If you apply that below the eye, too, and wait a minute for it to dry a bit, and apply face powder, your black circles will also disappear... but that might be overdoing it a bit.

-J

Have you got that, fellas?

So what do you do if you cry, or your eye itches? Do it all again? Sod that for a lark. (That's a good oldish English saying too. )

 

[MeSci]

Frankly, we're in a no-win situation with doctors who want to believe ME is a psychosomatic illness... or even ones who don't want to work hard enough to figure out what they could do to help us. If we come in looking like we feel -- death warmed over -- then they label us depressed, not physically ill. If we come in looking healthy, then we can't be really ill. It's far more about their preconceptions and ego than it is about what we look like or what we say. Sigh....

I thought that one of our problems was supposed to be looking too well...you know - the saying "But you don't look ill." People tend to say that I look well, or even good.

 

[MeSci]

Ah, British understatement. I've never heard that term here in Australia.

I've never heard it in the UK, and there's no reference to it in my trusty online Oxford dictionary, or in my hard-copy one. One for the translations thread, methinks.

 

[SOC]

So what do you do if you cry, or your eye itches? Do it all again?

Nah, decent quality modern cosmetics don't come off all that easily. This is the 21st century, girl!

 

[Valentijn]

Admittedly, I've never worn make-up. But looking classy/wealthy/assertive/professional might be more effective in any case. And that can be done with the right clothes and a bit of jewellery, without too much effort going into hair and make-up. So long as everything is neat and well-groomed.

Sorta like the decrepit grandma getting fancied up for a family reunion. Looking frail but important enough for someone to take good care of her, with that air of authority.

 

[MeSci]

Nah, decent quality modern cosmetics don't come off all that easily. This is the 21st century, girl!

What about the chemicals? Many of us are chemically sensitive, and even for those who aren't, a lot of chemicals in cosmetics are suspect:

http://www.fda.gov/Cosmetics/ScienceResearch/Research/ucm388816.htm

I don't think that women should still be feeling that they have to put on disguises in the 21st century. It's never been required of me in my jobs. No one has ever asked me why I don't wear make-up. No doctors or other professionals seem to have reacted negatively to me due to a lack of make-up.

Maybe make-up-free women are rarer in the USA than in the UK, but there are lots of us here!

 

[Calathea]

I always find the sociological stuff around make-up fascinating. I ended up randomly reading up on eyebrows recently, as you do. As someone put it, the fashion industry is in the business of breaking women down into very small components and then telling us what is wrong with each of them, why we should feel ashamed about that, and how to spend money to fix it.

I'm 37. I had fun playing with make-up in my late teens and early twenties, especially eye make-up. I also have fairly strong myopia, and was wearing contact lenses back then whereas now I am wearing glasses. I can't see to do make-up without my specs on and find it incredibly hard to get the brushes in between my specs and my eyes. Also I have incredibly sensitive skin, dislike the feeling of make-up on my skin, and mild Dry Eye Syndrome. You can see why I haven't worn make-up for years. I did buy some cheapie-but-surprisingly-reputable stuff from Superdrug the other year (next problem: I'm vegan and only use cruelty-free cosmetics, not to mention that practically everything upsets my skin, any clothes I buy from eBay have to be washed multiple times to get rid of the detergent smell most people don't notice is there), tried it on once or twice, had fun, but had the usual problems, and it was odd, it didn't look like me!

Although I am really, really glad I had lipstick around for when it came to taking my new Taxicard photo. The last time, I hadn't worn any make-up, I my mouth wasn't all that much darker than the rest of the skin, and they put the stamp exactly over my mouth. The photo looks like I have no mouth and is thoroughly creepy. Symbolic silencing of women! This time I grabbed one, not a great colour (I never did figure out the best colour for lipstick), looked really peculiar on, but the photo comes out looking natural. We've been talking elsewhere about how my lips turn blue when I'm tired, so I must naturally have pale lips.

Actually, if I'm at a doctor's appointment and my lips turn blue, that's a good point for my partner to intervene and get me out of there, or at least get me a rest/drink/food. He can also say "look, her lips have turned blue" but I doubt they'd care. You never know. I occasionally borrow him to get him to talk to people on my behalf so they'll pay attention, it's handy having a cis white straight non-disabled male around.

Anyway, on thinking it over, I am actually far too ill to be putting on make-up before going out to see a doctor, so there's no point anyway. The appointments are often too early in the day for me and I am scrambling like hell to get myself up and out of the house in time. Not to mention that my vision's blurry in the morning, though less so since I got a looser sleep mask.

@JaimeS - goodness, you do all that? I generally just used to put taupe on my eyelid and then use very dark brown eyeshadow along the lash line, as I found that pencil eyeliner always runs and liquid eyeliner is harder to do neatly and can look a bit harsh. Using dark eyeshadow was fun, you could do it quite subtly or do a smokier look. The main problem, as I recall, was getting concealer to stay put on the area under my eyes, which has been very dark since I was a child, and finding a good colour lipstick for me. I also needed foundation, powder and blusher if I were to look made up in the normal way. These days I wouldn't be able to stand up long enough to put on make-up properly anyway.

Something has suddenly made sense to me. I have had two GPs point out to me that I have slightly uneven skin colouring, it's darker over my nose and around my mouth. I think they said it was something to do with hormones and didn't matter at all. I was a bit peeved, I'd never noticed before. (I am a lot happier if I am not staring closely in the mirror every day fretting about minute details of my appearance that no one cares about. I mean, I look nice, I go to great trouble to find clothing that is attractive and also comfortable to wear in bed and with yoyoing body temperature, and which you can hide a TENS machine in. But I don't fret about the size of the pores on my nose any more.) I have been wondering why on earth they brought up something so important. Perhaps the answer is that they consider it normal to see women wearing makeup that makes their skin look perfect, and find it jarring when one doesn't. They were both women, one was youngish and I can't remember the other.

Anyway, I have some nice jewellery, pretty wooden hair forks which my hair is finally long enough again to use, good coats and an impressive scarf collection, so I can probably make myself look more dressed up for doctors. My nice tops which I can hide a TENS machine in are a bit more cleavagey, is that a yes or a no?

Hey, should we start a thread on ways of making yourself look nice when you have ME? Finding comfortable-yet-attractive clothing, that sort of thing?

 

[MeSci]

it was odd, it didn't look like me!

That's one reason I stopped wearing make-up - it didn't look like me. I felt as though I was in disguise. It was good to finally look in the mirror and recognise myself! I think I felt more able to be myself.

Something has suddenly made sense to me. I have had two GPs point out to me that I have slightly uneven skin colouring, it's darker over my nose and around my mouth. I think they said it was something to do with hormones and didn't matter at all. I was a bit peeved, I'd never noticed before. (I am a lot happier if I am not staring closely in the mirror every day fretting about minute details of my appearance that no one cares about. I mean, I look nice, I go to great trouble to find clothing that is attractive and also comfortable to wear in bed and with yoyoing body temperature, and which you can hide a TENS machine in. But I don't fret about the size of the pores on my nose any more.) I have been wondering why on earth they brought up something so important. Perhaps the answer is that they consider it normal to see women wearing makeup that makes their skin look perfect, and find it jarring when one doesn't. They were both women, one was youngish and I can't remember the other.

That is a strange thing for doctors to remark on. If it doesn't matter, why mention it? We all have 'imperfections'. I had a unilateral facial paralysis at age 5, leaving my face lop-sided. I had (ineffective) treatment that brought up the small veins on my face, so I have had those ever since. For years I covered those up due to extreme self-consciousness (had to go through the rest of my childhood, adolescence and adulthood with these disfigurements), until my Damascene moment when I dumped the make-up. Did everyone start treating me differently? Not at all!

 

[Sean]

Some advantages to being a boy. You can look as scruffy as you want, and nobody really cares (except your mum, of course).

 

[JaimeS]

Have you got that, fellas?

So what do you do if you cry, or your eye itches? Do it all again? Sod that for a lark. (That's a good oldish English saying too. )

If you use Primer Potion, what happens if you cry or have an itch?

Nothing, that's what.

That stuff is psychic and only is removed when you decide to at the end of the day!

-J

 

[JaimeS]

I don't think that women should still be feeling that they have to put on disguises in the 21st century. It's never been required of me in my jobs. No one has ever asked me why I don't wear make-up. No doctors or other professionals seem to have reacted negatively to me due to a lack of make-up.

Maybe make-up-free women are rarer in the USA than in the UK, but there are lots of us here!

Well put-together clothing is not a 'disguise' despite the fact that it covers my body. And it's not 'required' at my workplace, either. But as someone who sometimes wears it and sometimes doesn't, it's remarkable the difference in the way one is treated. I'm all for "should be"s, but they're not always practical.

Regarding prevalence, how much one is 'expected' to wear makeup depends on one's age, cultural background, and geographical location - at least in the U.S. Southern women tend to be more 'put together' in terms of hair and makeup, though not always in a way I find attractive. In the city where I am from on the other hand, makeup is lighter and hair isn't half so teased, but clothing and shoes are considered the same kind of currency.

-J

 

[JaimeS]

The main problem, as I recall, was getting concealer to stay put on the area under my eyes, which has been very dark since I was a child, and finding a good colour lipstick for me. I also needed foundation, powder and blusher if I were to look made up in the normal way.

It's funny how fast it goes once you're practiced at it. But when I first got my job as a high school teacher I spent three or four times as long trying to get it 'right' and watching videos and things. As per above, I suck at eyeliner.

I have sensitive skin too, and don't use foundation or blush most of the time except right below the eyes. In fact, I don't usually touch anything but the eyes and apply lipgloss.

I've found my eyes are dry whether or not I wear makeup, so I don't feel it makes any difference one way or the other...

pretty wooden hair forks which my hair is finally long enough again to use

I also use these! They are lovely. <3

Hey, should we start a thread on ways of making yourself look nice when you have ME? Finding comfortable-yet-attractive clothing, that sort of thing?

It's a good idea, AND I'm not sure how it would be taken. Everyone is at such different energy levels, they might find it insulting to be recommended that they spend some of their scant energy on how they appear to others...

-J

 

[Bob]

Some advantages to being a boy. You can look as scruffy as you want, and nobody really cares (except your mum, of course).

I often don't shave for long periods, and my beard got quite bushy once, after a prolonged bad spell. I thought the facial overgrowth looked hideous, and most friends and family reacted negatively to it, but my mum actually liked it! (Dad's always had a beard.)

 

[ahimsa]

This is a complicated subject. I want to start by saying that any criticism in my post is directed at society's rigid norms and stereotypes.

As individuals, we all have to make choices that are constrained by our situation. There lots of "no win" situations and compromises. No blaming or shaming of any individual's action should be read in my post!

That said, I'm intrigued by the idea that make up would make a doctor take a woman patient more seriously.

I always think of make up, fancy hairstyles, high heels, and so on as ways to fit into the established norms of beauty (mostly heteronormative, male gaze centric) that are held up by society. These norms are very much intertwined with race and class. Folks with more privilege have more leeway and don't have to conform as closely. These beauty norms also change depending on the year, location, and so many other factors.

At any rate, in spite of having thought about these things quite a bit over the years, somehow it never occurred to me that make up would be one way for me to be taken more seriously, whether by my doctor or anyone else. I only saw make up in the context of beauty, dating, attraction, costumes, performance, etc. But not as a tool that would make someone take me more seriously.

I have not worn any make up since my early 20s (I'm 54 now). And even in my 20s it was pretty rare (e.g., my sister asked me to wear it for her wedding photos, but I didn't wear anything beyond lip gloss when I got married). Although plenty of women that I worked with did wear make up, it was never an expected thing in my workplace - at least, not to my knowledge.

But I'm a software engineer. I worked in a very casual environment. Most folks wore jeans and t-shirts. Some wore cut-off shorts and sandals/flip-flops while others wore more dressy clothes. Although suits were quite rare, some guys wore ties. One guy who wore a tie told me he was rebelling against the "uniform" of blue jeans. At any rate, there was a range of clothing but it was a personal choice.

So as you can see, there was less pressure, for both men or women, to conform to a more traditional "business" or "professional" appearance. I think that may be why it never occurred to me that "make up" = "serious" in some people's minds. I quite literally would never have thought of "serious" if someone had asked me to list the attributes or qualities associated with make up.

It's not that the equation "make up" = "serious" is wrong. It's just one that I never knew about (or if I did, I've forgotten it). Whereas if I do a word association game with the word suit, then yes, serious and professional are words that come to mind.

Back to the subject, I have no idea whether make up would help make doctors take me more seriously or not. But I'm just not up for wearing it, even if it would help me in some way. Nice clothing (dress slacks with a blouse) is about enough work for me.

Again, I don't think wearing make up is wrong or anything like that! But it just wouldn't feel like me. Somehow wearing make up feels like a different category than putting on dressy clothes or a suit and tie. But I can't explain why.

Then again, maybe I'm just lazy.

 

[JaimeS]

@Snow Leopard -
I think I put that in a hard-to-understand way. When I say The South, I'm referring to the American south. I was 'translating' to a UK phrase ('hacked off') for people who better recognize British phrasing. There are now a few comments on this in another thread.

 

[JaimeS]

Again, I don't think wearing make up is wrong or anything like that! But it just wouldn't feel like me. Somehow wearing make up feels like a different category than putting on dressy clothes or a suit and tie. But I can't explain why.

I remember having a conversation with someone about this: I was in a restroom in a perfectly tailored suit about to give a talk to a group that included a state senator (my, how times have changed for me!) I was making sure every hair lay properly, that my eyeliner was straight as an arrow, etc. and an older woman came in and stared at me for twenty good seconds while I did my last-second adjustments. She said, "you know that's not going to change how your remarks are received."

Wow, really?

I told her, "some women gain gravitas as they get older. I haven't hit thirty, yet. Some women are tall. I'm not. Some women are drop-dead gorgeous. I'm not knocking my looks, but that's not me. Some women have an authoritative voice. Not me. And guess what? I don't have a man's implied authority in this society, either. I have my intelligence, my ability to be articulate and engaging, and this. I'll work with what I have, thanks." I was already in speechifying mode, so it really was just like that.

She didn't say anything, but I could tell she was totally disgusted by what I'd said. Like, "that shouldn't be true." But in the moment it was the god's honest truth: no one is going to listen to you with a smear of eyeliner halfway across your face, and if they do it's going to be because your words OVERCAME that first impression of slovenliness or carelessness, not because everyone in the audience is too noble to pay any mind to that sort of thing, even subconsciously.

Yet it was clear to me through her reaction that women receive it from both sides: spend time on your appearance so that you look (at the very least) professional yet approachable, but don't discuss what you do or show us how you do it: it's very important you make it look effortless. Because if you don't, you're a puppet of the Machine and/or desperate for attention.

Let me finish by saying that the standards one sets for giving a talk in front of intimidating people are not the standards one must have for the doctor's office!

I even had it backfire a bit at a doctor's office where the doctor was wearing a tee shirt. I felt a bit overdressed!

But I'm a software engineer. I worked in a very casual environment. Most folks wore jeans and t-shirts. Some wore cut-off shorts and sandals/flip-flops while others wore more dressy clothes. Although suits were quite rare, some guys wore ties. One guy who wore a tie told me he was rebelling against the "uniform" of blue jeans. At any rate, there was a range of clothing but it was a personal choice.

Every job I have ever had has involved standing up and presenting in some way. I think that informs my perspective considerably.

-J

 

[ahimsa]

Yet it was clear to me through her reaction that women receive it from both sides: spend time on your appearance so that you look (at the very least) professional yet approachable, but don't discuss what you do or show us how you do it: it's very important you make it look effortless. Because if you don't, you're a puppet of the Machine and/or desperate for attention.

Sorry that you had an unpleasant experience with that women in the bathroom! Unsolicited advice is generally not a good idea. I'm not sure what she thought her comment would accomplish. You were just trying to do your job.

As I tried to say in my earlier message, I think it's important that we never attack individual women for how they navigate their way through society's maze of beauty norms. As you said, it's such a no-win situation. Patriarchy - you're soaking in it! People are too quick to criticize individual actions instead of fighting and dismantling the systemic forces causing inequality.

I do feel free to attack the system itself. I wholeheartedly support a fight to dismantle the idea that only by wearing make up can a woman look "professional." That's a fight worth having, as long as no individual women (or men!) are shamed/blamed for choosing to wear make up.

Every job I have ever had has involved standing up and presenting in some way. I think that informs my perspective considerably.

People don't realize it but engineers often have to make presentations, too. But usually not to the general public - that may be one of the big differences. I made presentations to groups both large and small (e.g, to our Field Application Engineers, engineering standards organizations, upper management, but rarely to customers, that was mostly marketing/sales - and those women did indeed wear more make up). I also taught some classes (company training). I often wore either suits or slacks and a blazer. But no make up.

I thought I looked reasonably professional. And I was taken seriously. People asked me technical questions (e.g., Explain what changes you made to the interrupt handler to reduce interrupt latency?) and people took me seriously because I was able to answer their questions. I got promotions at work and was even offered a management position. I declined because I preferred the technical side.

In short, I was able to be a successful professional for 18 years without wearing any makeup. Other women I worked with had a similar experience.

Again, it's interesting to learn that "make up" = "serious" / "professional" seems to be a widespread association. I feel kind of silly about it but I honestly did not make that association! I thought make up in the corporate world (my company was Fortune 500, not a tiny startup) was mostly about being seen as attractive, and sometimes sexual or feminine, but the word professional would not have come to mind.

I was either oblivious (focusing on other things) or things have changed a lot since I started work in 1982.

It's interesting! I have learned something new, which is always a good thing.

 

[MeSci]

Well put-together clothing is not a 'disguise' despite the fact that it covers my body. And it's not 'required' at my workplace, either. But as someone who sometimes wears it and sometimes doesn't, it's remarkable the difference in the way one is treated. I'm all for "should be"s, but they're not always practical.

Regarding prevalence, how much one is 'expected' to wear makeup depends on one's age, cultural background, and geographical location - at least in the U.S. Southern women tend to be more 'put together' in terms of hair and makeup, though not always in a way I find attractive. In the city where I am from on the other hand, makeup is lighter and hair isn't half so teased, but clothing and shoes are considered the same kind of currency.

-J

I'm talking about make-up and hairstyles, not clothes. I dress quite neatly when I go shopping or to the doctor's, but scruffily at home as I do a lot of things that require old clothes, e.g. gardening. I wore clean and reasonably tidy clothes at work. My shoes tend to be a bit battered. And I actually prefer the appearance of other people who dress like that, and especially if they dare to be really different!

If visiting the doctor, I tend to focus on clothes that can be loosened/removed easily if necessary, to cause minimum embarrassment. And generally my priority is comfort.

I think I must be put together - I haven't quite fallen apart yet!