Diagnosis (or not) by gaslight??????????? - PMRGCAuk

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Diagnosis (or not) by gaslight???????????

PMRpro profile image
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44 Replies

This link to an article was posted on the Lupus forum but I thought others might like to see it - it is a horrifying inditement of the attitudes to women with chronic illnesses of all sorts.

healthunlocked.com/api/redi...

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44 Replies
whitefishbay profile image
whitefishbay

No wonder women are so stoic - they have to be.

SnazzyD profile image
SnazzyD

Oh yes, I’ve suffered from this attitude in my life and ended up seriously ill three times.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

Gumbling appendix first - both daughters had exactly the same. PMR. But mercifully nothing serious. But the daughters both have endometriosis and the younger one is waiting for surgery because everything is affected - this is after 26 years of visiting doctors.

jinasc profile image
jinasc in reply to PMRpro

I can totally sympathise with your girls and how they carry out their exceptional caring jobs, I can only wonder. I was diagnosed with endo 50 years ago and an op 1 month later - this after 18 months of hell. The 2nd Gynae was up to speed thankfully.

PMRpro profile image
PMRproAmbassador in reply to jinasc

The first one Esca saw told her to go and have a baby! At 19, first year of uni!

Reeceregan profile image
Reeceregan in reply to PMRpro

I too was told to go have another child...I was a 26 y.o. divorced, working, struggling to make ends meet, single mum at the time with no man on the scene. Yeah, nah......

Reeceregan profile image
Reeceregan in reply to Reeceregan

Should have added with sever endometriosis and just had an ovary and tube removed. He received my best resting bitch face stare.

SnazzyD profile image
SnazzyD in reply to PMRpro

Yes, my appendix was one where the doctor told me that as a nurse I was making more out of what was probably just period pain. When I was 11 in the 70’s I was getting intense headaches and intermittent blindness and my mother was told I was hysterical partly due to my menstruation starting too early. It turned out to be a massive cyst in my neck that only got their attention when it became the size of an orange on my neck.

scats profile image
scats

I have often .felt that a doctor thought I was making a fuss about nothing. It was a physio that spotted I needed a new hip, the GP thought it was sciatica and didn't bother with an x-ray.

I thought it was accepted that women tolerated pain better than men, so surely if they are complaining it must be bad.

It is scary that women half as likely to be admitted with chest pain. Eeek. You can see it in their eyes that they aren't taking you seriously. There was that the other day that meds aren't generally trialled on drugs, and I read that they don't make or test artificial joints on women. Then I read at the current rate it would take up to 50more years for equal pay to be the norm.... Hey ho! Gaslight😳

HeronNS profile image
HeronNS in reply to

Even safely equipment is designed for men. A "small" size man's suit will not fit a female firefighter or astronaut correctly and puts their lives at risk.

in reply to HeronNS

You would think after 35yrars plus if female fire fighters and astronauts etc they would get it right.

HeronNS profile image
HeronNS in reply to

You'd think but apparently not. I suppose like the conditions which have recently finally exploded in the Me Too movement women just stoically put up with it, thinking that's just the way things are. I'm thinking it's like the little girl I read about years ago who always had a headache, I think it was found at some point she was allergic to something, whatever it was it was treatable, and then the headache went away. She didn't know that having a headache wasn't normal.

Spanky2019 profile image
Spanky2019 in reply to

Dau same problem as police officer.

in reply to Spanky2019

The bulk they wear these days as well! They don't cut those stab vests for women, they can't see over them. 😮

Highlandtiger profile image
Highlandtiger in reply to HeronNS

More likely to be seriously injured in a car accident too as our seated position in a car is considered 'abnormal' and crash test dummies used in tests are based on men's sizes and their 'normal' seated positions.

HeronNS profile image
HeronNS in reply to Highlandtiger

Surely the seatbelt issue would affect everyone, as both men and women come in different sizes so there's probably only a narrow range of people who actually are the ideal size for a seatbelt to work optimally. It would be good if airbags solved the problem but they are more likely to seriously injure or kill smaller people.

Highlandtiger profile image
Highlandtiger in reply to HeronNS

I knew I’d read about it somewhere....I think this was the article. To be fair it’s not ‘abnormal' as I said but 'out of position'.

theguardian.com/lifeandstyl...

Highlandtiger profile image
Highlandtiger

Horrifying article but sadly probably not that surprising considering the experiences a lot of us have had ourselves.

HeronNS profile image
HeronNS

Timely. Here there's been a lot of discussion lately about the disparity in the way men and women are diagnosed with heart attack. A man presenting with crushing chest pain at the emergency department will be rushed into treatment right away. A woman presenting with a tight feeling or a sensation of pressure in her chest may have a wait of up to ten hours, constantly being triaged to the bottom of the list because the symptoms as she expressed them are deemed insignificant.* The fault is not with the woman but with a system which doesn't expect women to have heart attacks, or understand that she may describe and feel symptoms differently.

*True story. The woman survived to tell her tale. She also said as soon as she was seen her real condition was discovered and she was rushed into care.

But it's not just women who suffer in this system. If you are not a white male you are disadvantaged. This case is extreme:

cbc.ca/news/canada/manitoba...

in reply to HeronNS

Terrible. Couldn't bring myself to like it. 😳

HeronNS profile image
HeronNS in reply to

I know. The entire country was appalled.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Yes - I remember that, was utterly disgusted.

SheffieldJane profile image
SheffieldJane

It is horrifying and on this journey most of us have experienced the attitude, however subliminal. I usually cut the consultation short when I realise that I’ve got one of those doctors and they don’t like that, it’s as if I am saying lines from the wrong play.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

This happened to me in my late teens - my mother recognized the early signs of an over active thyroid gland - both my older brothers suffered from it as well. So she dragged me long to GP - who referred me to hospital.

I did have radioactive iodine treatment, but the follow up letter quoted "too early to embark on long term therapy of thyrotoxicosis, review 6 weeks. Following review it was decided enlarged thyroid was due to adolescence and "she presented a picture of anxiety rather than hyperthyroidism"

I was not, and never have been "a picture of anxiety"

I discovered this comment when I received a copy of my medical records following the GCA debacle. Its seems even in 50 years nothing changes much between doctors and female patients.

Thelmarina profile image
Thelmarina

As an actor I was clearly unstable and was given milk of magnesia for what turned out to be an ectopic pregnancy. If I hadn’t got myself into A&E I could have died...this was a long time ago and I had hoped this short cut attitude to women’s health was a thing of the past. We just have to keep challenging our GPS with sensible questions and suggestions to make it harder for them to stop thinking! My current GP is fabulous so we have to be wary of generalisations..

HeronNS profile image
HeronNS in reply to Thelmarina

I was literally dying of loss of blood through a stomach bleed in my late 20s, and the doctor at student health when my husband phoned assumed I had the flu, without seeing me, and said "there's a lot of that going around". Eventually I staggered to the office and as soon as they saw me in the doorway they called an ambulance and rushed me to the hospital where I received four units of blood. Thank goodness a few years before AIDS and Canada's tainted blood scandal, or I wouldn't be here and neither would my children.

Spanky2019 profile image
Spanky2019

Can relate totally. I too, could write a book.

krillemy profile image
krillemy

Yes - this SO true. I did not realise this discrimination on till I had MPR symptoms at 51. After 1 visit to the Reumatologist (PET scan) 1 test for addison's the endocrinologist referred me to the department for "complex symptoms" (psyke. or people given up by doctors)!!! "You DO have so many symptoms he said.... " All though it was a mistake it is still in my charts, and I think it colors all the doctors view on me now. Lopus, PMR, MS, Lyme disease are all tested for and they say they are negative, but as in the article in the REAL world it takes years! Maybe the MeTo movement should come in here and help women with real problems.

Spittal9 profile image
Spittal9

I'm not surprised by this at all. I've just completed a Gender Inequality course (the things you do when PMR strikes lol...) I'm also reading a book called Invisible Women: Exposing Data Bias in a World Designed for Men by Caroline Criado-Perez. It's makes for very interesting reading in this man's world.

Highlandtiger profile image
Highlandtiger in reply to Spittal9

Funnily enough I’ve had it on my reserve list at the local library for ages now but I never seem to get to the top of the wait list so obviously lots of people are wanting to read it! The article I linked to above is based on the book.

Spittal9 profile image
Spittal9 in reply to Highlandtiger

I downloaded it from Amazon to my phone. Really makes you think about things.

Highlandtiger profile image
Highlandtiger in reply to Spittal9

I just checked online and I’m now number 12 of 16 waiting for it so it will be a while I guess but I see that I’m at the top for Yvette Cooper's one on Women's Voices so I’ll give that one a try first. Getting radical in my old age! 🙂

Spittal9 profile image
Spittal9 in reply to Highlandtiger

You'll get it eventually lol. Enjoy!

HeronNS profile image
HeronNS in reply to Highlandtiger

I just placed a hold at my library. Number 59 of 9 copies!

Highlandtiger profile image
Highlandtiger in reply to HeronNS

Popular book! There seem to be 6 copies here so I think I might beat you to it!

HeronNS profile image
HeronNS in reply to Highlandtiger

Ah but you've been waiting a long time already. I know you will beat me to it, though. Unfortunately one of the copies was due back in early October, and two of them are on order, so really only six copies currently circulating. But that's okay. I'm part way into an immense novel by Elizabeth Gilbert which should keep me occupied for a while.

Jackoh profile image
Jackoh

Interesting, revealing and concerning article. I’m sure a lot of us, I know I probably have, been labelled “difficult !! “

HeronNS profile image
HeronNS in reply to Jackoh

Me too, but never was it explained in what way I was difficult.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Me too - but I do know why! I didn't take the received wisdom as truth ...

Jackoh profile image
Jackoh in reply to HeronNS

Yes same as PMRpro for me. When GP said I didn’t have GCA and I went private and the Consultant confirmed GCA - that seemed the start of a “not too good relationship! “😱

stiff19 profile image
stiff19

Incredible when technology advances so quickly yet women still left behind.

I often feel dismissed just thought it’s as cos I’m lower class but add being a woman I’ve got no chance in hell.

Interested read Thankyou for posting it 🙌🏻

HeronNS profile image
HeronNS in reply to stiff19

I seriously think older women are indeed invisible.

stiff19 profile image
stiff19

Yes or it’s your age or something ridiculous. I never complained about health even when should have until I just couldn’t cope, and still poo pooed even then. I want to give up looking for an answer but when I know I could get help if only, why should I suffer.

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