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

[SOC]

I seem to have hit on the right formula for keeping my current doctor sweet.

1. Don't mention ME AT ALL if at all possible.
2. Be friendly and polite.
3. Keep the conversation like one with someone of similar intelligence and knowledge.
4. Be alternately lighthearted and serious, like a normal conversation.
5. Show appreciation and understanding for what the doc says and does.

If we reported that we had to jump through these kinds of hoops to keep our spouses "sweet", other people would be all up in arms about us being in an emotionally abuse relationship, but somehow when it's a doctor, we're expected to act like abused people.

 

[ahimsa]

I'll never forget when my pragmatic feminist of an older sister advised me to "cry, but just a little" during an upcoming important doctor's appointment. "It's how they know you're serious," ...

Early in my illness (pre-diagnosis, early 1990s) I had a different strategy for being taken seriously. I took my husband with me to all my doctor appointments.

Actually, he had to be there a lot even without this plan. Many times I was too sick to drive myself. And then in 1991 I got to the point where even walking down hallways at the hospitals and clinics was way too much for me. At my worst I had trouble just walking 10-15 feet. We ended up renting a wheelchair so that my appointments would not be so exhausting. (I'm much better now even though I did finally get too sick to work)

But even without those issues I knew that having him there (male presence) added credibility to my story and would make a favorable impression on the doctor.

Another idea was for him to always wear a suit and tie. That was his idea, not mine, but it seemed to help.

In short, we tried to use the subconscious biases of our society to our advantage. Sad that we had to consider the "optics" of the appointment instead of just dealing with my medical issues.

 

[JaimeS]

In short, we tried to use the subconscious biases of our society to our advantage. Sad that we had to consider the "optics" of the appointment instead of just dealing with my medical issues.

Always very conscious of hair, makeup, and outfit: you can't be too careful.

Note to others: dragging your mother along when you are debilitated has the opposite effect. Fascinating, albeit ridiculous, what this tells us about society...

-J

 

[Snow Leopard]

If we reported that we had to jump through these kinds of hoops to keep our spouses "sweet", other people would be all up in arms about us being in an emotionally abuse relationship, but somehow when it's a doctor, we're expected to act like abused people.

Just 'liking' this post wasn't enough... You hit the nail on the head!

 

[GracieJ]

I am about halfway through this lady's work. Good stuff. We need more like her!

Doctors, I have been relatively lucky with. I did get the it's depression routine a few times, after long series of tests, but I mostly got a frustrated shrug, hands in the air in defeat, along with the honest words, "I just do not know what is wrong with you."

Those years were still frustrating, having gone through 14 doctors in 8 years. But now I know in comparison just how lucky I was to slide through the cracks.

It's the rest of society that messed it up for me - friends, family, employers. Spouses.

 

[MeSci]

My mom, who has "Epstein-Barr Syndrome" lives by this. She simply doesn't mention her most major health concern.

I know it's practical, but it does burn my biscuits!

-J

Never heard the expression "burn my biscuits" before! I didn't know you even used the term 'biscuits' in the USA.

What do you mean by "Epstein-Barr Syndrome"?

 

[MeSci]

If we reported that we had to jump through these kinds of hoops to keep our spouses "sweet", other people would be all up in arms about us being in an emotionally abuse relationship, but somehow when it's a doctor, we're expected to act like abused people.

OTOH this doctor does respond well to a level of assertivenesss that other docs have appeared to resent. So I ask for the phone appointments, I told him that I wanted to stop my ACE inhibitor, and what dose of what drug I wanted to switch to, and he agreed. I told him that I thought other doctors had been wrong about the cause of my hyponatraemia, and he AGREED! I felt like hugging him - it was so unusual for a doctor to agree with me. When I told him how difficult it was for me to get to the surgery/office for morning blood tests, he arranged for a nurse to do them at my home. He seems to go out of his way to circumvent difficulties, possibly breaking rules. It is so refreshing.

He's not perfect by any means, but may be the best I can get round here on the NHS.

 

[MeSci]

Always very conscious of hair, makeup, and outfit: you can't be too careful. -J

I don't have a hairstyle as such - it just hangs down, and I cut it when it gets in the way, with any scissors that are sharp enough. I haven't worn make-up for almost 40 years!

 

[Bob]

I have a strategy for my doctor as well...

1. Avoid.
2. If I can't avoid, then at least pretend there's nothing wrong.
3. If I have to admit I have a health issue then pretend it's a mild, uneventful, and isolated issue. And that my health situation is all rather silly and hilarious.

Perhaps it explains why I can't get any treatment!

Edit: Still, I've tried an assertive and persistent strategy too, and the ultimate results are very similar, so it seems to make little difference in the long run. In the short term, I get added frustration with an assertive approach, because the results are still negative, and I get gently ushered out of the surgery on occasion, or tearful.

 

[JaimeS]

Never heard the expression "burn my biscuits" before! I didn't know you even used the term 'biscuits' in the USA.

What do you mean by "Epstein-Barr Syndrome"?

Hahaha, I used the phrase tongue-in-cheek - it's a Deep South saying, and I am not from there. In the UK, a 'biscuit' is a cookie, y? Here it is a fluffy roll, but with a more mealy, substantial texture. Usually with a lot of butter that makes it flaky after it's cooked.

Epstein-Barr Syndrome is yet another name for Chronic Fatigue Syndrome here in the US, popular in the 1990s. There was a brief while when it was assumed everyone who had CFS had a high EBV titre (titre? That's the right word, isn't it?) Therefore, I'm not sure if she was ever actually tested or EBV or she simply met the diagnostic criteria for CFS. My older sister has the same label, though. I think it's far more likely that she was actually tested for EBV, because she got the 'label' long after it had fallen out of favor.

-J

 

[JaimeS]

I don't have a hairstyle as such - it just hangs down, and I cut it when it gets in the way, with any scissors that are sharp enough. I haven't worn make-up for almost 40 years!

As a woman who still looks like a girl (I should be thanking my lucky stars, I know) not wearing makeup is 'clearly' a sign of depression and lack of self-care.

Plus, I like it.

At the very least, I've never gotten the "put on a little lipgloss / nailpolish and find a man and you'll be all better" speech that some have!

-J

 

[SOC]

As a woman who still looks like a girl (I should be thanking my lucky stars, I know) not wearing makeup is 'clearly' a sign of depression and lack of self-care.

Plus, I like it.

At the very least, I've never gotten the "put on a little lipgloss / nailpolish and find a man and you'll be all better" speech that some have!

Years ago I paid minimal attention to having a hairstyle and used very little makeup. When I was bedbound and housebound that changed to no hairstyle and no makeup. Now that I'm out and about in the world a bit (and 25 years older), I find that I get treated much better if I'm "finished" with a nice hairstyle and makeup. At some level this sickens me. Women shouldn't have to do all this to get treated decently -- as if not fitting some current standard of artificial youthful attractiveness makes us less valuable. Clean and with a decent haircut should be sufficient, as it is with men, but that's not the world we live in right now.

OTOH, after years of looking like a street person -- wearing nothing but sweats and having dirty lanky hair -- I admit I enjoy looking like a responsible working woman.

 

[JaimeS]

Understood, @SOC . I'd be lying if I said that the ability to put powder beneath my eyes and light-colored makeup at the corners to make myself look less about to keel over wasn't useful. I never wore much makeup before my first 'real' job, but I've always found you get more done faster when you look put together. It's not JUST 'attractive people are treated best' - it's 'people who look like they spend time on their appearance must be important people'. I consider it equivalent to @ahimsa 's partner wearing a suit, though I don't like how much harder women have to work to achieve the same effect.

OTOH, I remember one time I needed to stop at Home Depot after a date - good LORD there sure were a lot of people who wanted to help me out.

-J

 

[SOC]

Understood, @SOC . I'd be lying if I said that the ability to put powder beneath my eyes and light-colored makeup at the corners to make myself look less about to keel over wasn't useful. I never wore much makeup before my first 'real' job, but I've always found you get more done faster when you look put together. It's not JUST 'attractive people are treated best' - it's 'people who look like they spend time on their appearance must be important people'. I consider it equivalent to @ahimsa 's partner wearing a suit, though I don't like how much harder women have to work to achieve the same effect.

OTOH, I remember one time I needed to stop at Home Depot after a date - good LORD there sure were a lot of people who wanted to help me out.

-J

Agreed all around. Nothing wrong with looking put together and it does send a message beyond just looking attractive. It's just annoying we have to work more at meeting an acceptable standard of put together than men do and that "put together" equates more to "attractive" for women than it does for men. But this is with world we live in. Donald Trump. 'Nuff said.

I, too, have found that looking like death warmed over does get more offers of assistance when out in public -- a very valuable thing when one actually feels and functions like death warmed over. In general, it probably helps to look like you feel if you want to get treated appropriately by other people.

 

[MeSci]

As a woman who still looks like a girl (I should be thanking my lucky stars, I know) not wearing makeup is 'clearly' a sign of depression and lack of self-care.

Plus, I like it.

At the very least, I've never gotten the "put on a little lipgloss / nailpolish and find a man and you'll be all better" speech that some have!

-J

I look much younger than my 62 years - have always looked young - and lack of make-up didn't seem to scare the men off! (I say 'didn't' as I'm no longer interested...)

I stopped wearing make-up when I got in with a group of people where the women didn't wear make-up - but looked great!

 

[MeSci]

Hahaha, I used the phrase tongue-in-cheek - it's a Deep South saying, and I am not from there. In the UK, a 'biscuit' is a cookie, y? Here it is a fluffy roll, but with a more mealy, substantial texture. Usually with a lot of butter that makes it flaky after it's cooked.

So what does '"burn my biscuits" actually mean? (I've forgotten the context now.)

 

[JaimeS]

So what does '"burn my biscuits" actually mean? (I've forgotten the context now.)

In UK parlance, it means to be incredibly hacked off. Like, it lights the fire of your rage... but it's also paradoxically a phrase with a certain cutsey connotation, because it's used to substitute for curse words and the like. Therefore, it's a phrase primarily used by mamas and grandmas of the south. <3

-J

 

[Snow Leopard]

In UK parlance, it means to be incredibly hacked off.

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

 

[Calathea]

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.

 

[Calathea]

Actually, I could probably manage a bit of makeup, at least blush to make me look less pale, but surely looking ill helps your case?