3-Ds, Disbelief, Discrimination & Delays

[Narwhal10]

Dear All,

I feel it imperative as a community to discuss these in an open, safe and respectful way. Please note this is by no means discounting our male counterparts that suffer from this insidious illness. I wish to bring to the forefront, the Societal challenges that us, as women face.

Not only from the Medical world but our families, friends and colleagues. The Systemic Disbelief that we are subjected to. What does a chronic illness look like ? What does a disability look like ? It is only applicable to those of a certain age ? Those who use wheelchairs ? Or any other mobility aids ?

The answers to all of these are NO.

Due to being female, Gender Stereotypes occur in every industry not just in Healthcare. It took many to campaign for us women to vote and to receive equal pay. We still fight to be heard in a patriarchal medical system. We will be challenging the gaslighting that we experience. It is a subtle form of abuse. It is our duty as women and for men to point out that this behaviour is unacceptable in ANY relationship. For men and doctors to be reminded that they are ambassadors for equity, fairness and they must be committed to change.

Lest they forget, it was us that bore them, it was us who raised them and it was us who wiped away their tears and comforted them when they hurt themselves. We need to remind them of our Societal roles.

We are the main caregivers, we care for husbands, partners, children, elderly parents. We run homes, we manage finances, we educate our children. Yet our illnesses, our diseases are not taken seriously. So, where does that leave Society ?

Women are far more competent than we are given credit for. So, I ask again what happens to Society when women are too sick to perform their duties ? Society disintegrates. Elderly parents have to be put into nursing homes. Men go off and have affairs or there are divorces. Children are looked after by other family members or worse still are taken into foster care. So, the family unit disintegrates. This is the crux of the matter.

This is the reality of what happens with the Disbelief of a very real physical illness and the Gender based Discrimination.

The massive Delays that occur when finally the correct Diagnosis is found, is all too little too late.

So, I feel it appropriate when attending appointments take a male companion. Similarly, at telephone appointments please practice the line, so, it comes out in an even tone.

Are you discriminating against me upon the grounds of gender ? Please investigate my signs and symptoms methodically and treat me with a bit more respect. Thank you.

Best wishes.

🐳

[wedgewood]

What a great message you have put out Narwhal . Thank you so much . You put the case so articulately. You have hit the nail on the head ! Brilliant . You inspire us .

[Wwwdot]

Hi Narwhal

Spot on. I noticed this subconscious gender bias with my husband who has B12 deficiency due to prescribed drugs and me with B12 deficiency due to PA. Hubby received prompt and strong support from the private healthcare provider whereas I had to jump through hoops like a fair ground act to get even the basic of care. It is not good enough and no surprise why we are becoming so weary.

Awareness is key and so is passive correction - I do not have the energy for active campaigning as I am too preoccupied with all the tasks outlined in your excellent summary of my, and many others' lives.

🤗🤗🤗

[Wheat]

Hello, I totally agree with what you say.

However, am I disillusioned or a Realist when I say I cannot see anything changing or changing in my lifetime .

Gender bias is generally a very complicated wider issue. Simplistically its about power.

[Narwhal10 in reply to Wheat]

Absolutely it is a very complicated wider issue. I attended a particular event last night and let us just say there are big commitments to it. 😉

[Mixteca in reply to Wheat]

I believe Lenin said the same thing...😉

[Wheat in reply to Mixteca]

🙂

[Sleepybunny]

Hi,

There are a few links in thread below that may be relevant to women struggling to be treated fairly in medical matters.

Thread about Patient Safety

healthunlocked.com/pasoc/po...

[RoseFlowerDew in reply to Sleepybunny]

I wrote to patient safety about PA issues and got a standard reply of it being outside the remit. Is there a standardised complaint letter somewhere to report issues in a way that makes it fall within the remit?

[Narwhal10 in reply to RoseFlowerDew]

One will be in your personal messages on Sunday.

😘

[Sleepybunny in reply to Narwhal10]

Please can you send me one if you have time. Thanks.

[Narwhal10 in reply to Sleepybunny]

Erm, blushes, yes, I’ll do bog standard.

So, you slip in at [time] on [date] I had an appointment or blood test (delete as appropriate). Then had an appointment with Dr [Name] at [time] on [date]. So, it’s appropriate to your care.

Then you have a play with it but my letters are clear, objective and facts. No emotion in it but pretty effective.

Sunday ok too ?

[Narwhal10 in reply to Sleepybunny]

There’s a first draft in your inbox.

We can play. I’m off galavanting today may not be back until tomorrow afternoon and I’m wracking my brains on how to help EiCa.

None of us are going to be left behind. We are all helping each other, pulling each other up. It is fantastic team work with experts here and there.

[RoseFlowerDew in reply to Narwhal10]

Cool! Many thanks 😊

[Narwhal10 in reply to RoseFlowerDew]

There’s a draft in your inbox. 😘

[Mixteca in reply to RoseFlowerDew]

I don't see how they can justify that. It's very much about patient safety.

[Narwhal10 in reply to Mixteca]

So, Mixteca, they do not look at particular illnesses.

Therefore, you take an even bigger step back and when spiky one does that. Gosh on my right collar bone is tattooed KNOW YOUR RIGHTS.

gov.uk/government/organisat...

Apologies for non-U.K. based reading this. These are appropriate then :-

sdgs.un.org/goals

🤓

[Hockey_player]

One thing that helps me when I go to the doctors is to take a list of all my concerns and questions that I have and make sure I go through all of those. I can easily get rattled and forget to ask the doctor some of the things I wanted to ask. My doctor is awesome but I have encountered cases where I get better treatment if I bring a man along with me. Very sad but it happens.

[B12life]

Love this! A big part of it has to be us, continuing to prove ourselves but even more so set our boundaries and stand up for what we deserve.

I love that not only did you mention the problem, you gave a solution. I think a big part of why women get differential treatment is that we back down. We must be more assertive, not aggressive but diplomatic yet firm, just exactly the way your example represented.

I will not only apply this to my medical visits but my encounters in life.

Thanks Narwhal10 for this inspiration. And Thanks to all the men out there who do treat us with respect.

[Narwhal10 in reply to B12life]

My pleasure.

The approach is ‘iron fist, velvet glove.’

The self-assurance and resilience to know that you and every single person on this planet has the right to be treated with dignity and respect.

The diplomacy and tact to deal with situations.

However, tip to the wise ;-

I need to give this some more thought.

I will get back to you by Friday.

Are phrases I often say, hopefully by then I can remember the word that means ‘pledge’. (Brain fog). There are many men who do commit and have the tenacity to address and educate other men that their unsavoury behaviour and attitude towards women needs to change. Those men speak on our behalf. I am very grateful to them.

There are agendas and strategies which include people from all walks of life that this is a serious topic. The process is a continuous. Each time it occurs we just gently push back and remind them with the very powerful word of NO.

🤓

[Mixteca in reply to B12life]

And therein lies the problem. When women assert themselves they're deemed aggressive, whereas when men do the same they're respected because of their assertiveness.

[B12life in reply to Mixteca]

Yes. True.

I think we are learning to ignore that reaction and stay the course.

[Mixteca in reply to B12life]

Yes, it takes stamina and a lot of perseverance to stick to our guns.

[Narwhal10 in reply to Mixteca]

Oh, I’ve got guns, a Dragon emblazoned on one of them.💪🏽

It’s quite easy, erm I’m dreadfully sorry and I whisper and look down, You’re flying low. They look awkward and adjust. They weren’t but I made them look silly. 😂

[Wwwdot in reply to Mixteca]

Very true there are many gender biased descriptions strong leader/ bossy, driven/obsessed, organised/fussy and it goes on and on

[Narwhal10 in reply to Wwwdot]

Wwwdot, I feel it is important to stress that,

‘Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth.’

If you look at the beginning of the title, I have put 3-D. As a mathematician, I mean 3 dimensions. However, there is a 4th dimension too which is Time. Now, I’m sure on a few occasions Lenin, Stalin, Hitler shared a few jokes and laughed. Also, they displayed some form of affection in their romantic relationships. Sigmund Freud had a cocaine addiction and Karl Marx would not have achieved his work without his wife Jenny being relatively well-off.

Now, the concept of Time and Space is Einstein’s work and some believe his first wife, Mileva Marić, an exceptional mathematician aided his discoveries.

[NOTI1]

This is so accurate; thank you for voicing it. I have been thinking a great deal recently about how my late and many misdiagnosis were due to gender discrimination. I have also wondered if this should be voiced more in the collective challenge to current treatment. More women are affected by this condition, and so has an equality impact assessment been carried out by NICE when looking at treatment. I do not think so. It is so difficult to challenge this individually, but you are the first person to raise the issue, and maybe it is time to begin addressing it collectively for the benefit of all of us; where to start though.....

[Skimmingstone226 in reply to NOTI1]

So true. My GP said to me that I was “ overly dramatic “ when I said I could hardly get up the stairs to bed and had to lie down after a shower. Now I think… would he have said this to a man?

[Narwhal10 in reply to Skimmingstone226]

I am so sorry to read of this. The answer is NO.

Please feel free to report the Gender Discrimination to PALS using the Equality Act (2010). We can still be polite and ask people from refraining to behave in this manner.

🐳

[Narwhal10 in reply to NOTI1]

I like this NOTI1,

‘Equality Impact Assessment.’

Thank you very much indeed.

Continuous cycle of Equality assessment.

[andepande]

Well said I had to take my husband with me as I wasn’t capable of stringing a sentence together , i also got very upset they didn’t believe me just said I was depressed 😢

[Narwhal10 in reply to andepande]

Of course not, nobody understands all the tasks required to actually sit in a doctor’s office. So, here goes:-

1) Get up.

2) Make hot drink in kitchen (walk to kitchen, get mug, get spoon, get coffee, fetch milk, fill up kettle, wait for it to boil, pour in mug, stir).

3) Switch radio on.

4) Sip drink.

5) Come around or still feel like zombie.

6) Breakfast for some.

7) Walk to bedroom.

8) Take off night clothes.

9) Gather new clothes.

10) Dress. Try not to fall over.

11) Or the mammoth challenge of shower.

12) Toileting.

13). Wash face.

14) Brush teeth.

15) Style hair or wear hat.

16) Moisturise face.

17) Walk to hall.

18) Put coat on.

19) Get car keys.

20) Walk out of door.

21) Lock door.

22) Walk to car.

23) Open car door, get in sit down, belt on. etc. etc. etc.

36) Sit in doctor’s office.

We have actually done a Paula Radcliffe impression. Equivalent to a whole marathon just to sit there. 😘

[FlipperTD]

As ever, well said.👍

[Miss-guineapig]

Thank you Narwhal, I read your post with great interest. Britain still has a way to go of course but there have been positive changes and things have moved forward for the better in relation to gender discrimination. I was brought up very low social class in a very poor family with no mother. married at 17 and just celebrated our golden wedding. A miracle in itself considering the odd stacked against usand many dark days. My husband and I worked extremely hard to lift ourselves up from nothing…we worked together, even in the darkest days. We shared every responsibility . I went on to work in the NHS for nearly 40 yrs and I would never treat people differently and never during my illness’s eg PA and CKD have I felt treated differ than a male. I am not minimising your post, mine is Just another perspective. Wishing you well x

[Narwhal10 in reply to Miss-guineapig]

Thank you Miss-guineapig,

All viewpoints and perspectives are welcomed. I posted and used the word ‘discussion’ to learn and know of others’ experiences. Everyone has had their own unique experiences and from that we are able to share as a community. Everyone is heard. Every single one of us has a voice and for us to take on others’ thoughts, opinions and experiences respectfully. So, we may understand more of each others’ journeys. This promotes collaboration and interdependence.

You and your husband have worked as a team and I am pleased that you have understanding of the NHS. Plus, you received excellent care and treatment. We want everyone to have that.

It is quite a big ask.

All the best.

X

[Rexz]

Amen Narwhal10 ! So true women's role in our western society is completely undervalued. Women are the glue that holds us together yes they are caregivers but what allows that? They are generally much more sensitive and empathetic, they are much better communicators. Heck they talk only sometimes you can't get them to stop! 😋 I mean that in the fondest way. Honestly if it were not for my wife I may not be here today. Before I was properly diagnosed I was totally bedridden and had lost 90 pounds. I had no appetite. She cared for my every need. She always has a meal for me sitting on the bed I think hoping I'd at least take a bite. If I did eat something she'd feed me as I had complete right side numbness so that was difficult for me. She'd dress me, give me my meds, and on and on. So a big shout out to her and women like her.

For my healthcare I am fortunate to be able to seek out and select any doctor I wish to see at any hospital, private, practice or university. I went through 14 doctors my first year of this journey. I find it interesting that my best doctors now are women. They talk, they teach, they're animated, they care and mostly they communicate, male doctors, typically typically will grunt a few times scribble some notes.

Yes, there are good make doctors and male caregivers but most lack the empathy, the feeling to do this as well as a woman.

Well another one of my signature rambles and I'm sure someone will find fault in my diatribe.

Best wishes, Rexz

[Narwhal10 in reply to Rexz]

Any oak trees with the rambles 🤪

🐳

[Rexz in reply to Narwhal10]

Haha, yes! Very lovely empathetic oak trees! Oak trees are also great caregivers in many ways. They certainly nourish ones soul.

[RoseFlowerDew]

I for one am thankful that you have mentioned this. I am listening to the audiobook ’Some of us just fall’ and it describes so eloquently chronic illness, fighting for diagnosis and treatment, and the downright horrifying things said and forced to done because of the author being a woman. It’s opening the doors for me to admit to myself my loneliness, hopelessness of being a woman going through just as difficult experiences. I hope eventually to get effective diagnosis and treatment so I can at last mourn my lost decade of life and income because of pernicious anemia and other diseases and appalling experiences with health services both public and private. (But currently I am in a worse position than ever before because the GP and neuro are actively dismissing previous diagnosis as false positive.)

Its astounding that in my lifetime that the attitude towards women has deteriorated so much. In the 80s although there were real problematic issues, in general there was better behaviour towards women than now. Unfortunately there doesn’t seem to be powerful voices about it anymore. Lack of respect towards all kinds of ‘social groups’ aka human beings, that there’s a cacophony of demands for change. In general there is a need for better relationships in society……,perhaps a return of a little bit of old fashioned respect and etiquette is needed in the meantime?

[MorningMist in reply to RoseFlowerDew]

I think (sadly) that once women demanded more equal rights and showed themselves to be a match for men on many levels the old fashioned respect was largely withdrawn. What remains is an uneasy power struggle. And it makes me wonder if that respect wasn’t really something else in disguise.

[Narwhal10 in reply to RoseFlowerDew]

Thank you for the book recommendation. I am saddened and with a heavy heart, I can empathise with, ‘It’s opening the doors for me to admit to myself my loneliness, hopelessness of being a woman going through just as difficult experiences.

I do hope you get effective diagnosis and treatment and it is okay to start the grief process now. It can be appreciated that you are trying to fight a system. So, need strength and courage to achieve that.

Please know you are among trusted friends who can just listen to you relay your grief. It is not okay for you to loose a decade of your life.

I am a member of the Women’s Institute, with thousands of women across the U.K., Canada, South Africa and New Zealand with 4,500 members. We support and unite with many organisations so, as a collective we have a stronger voice. We are diligent and work from all levels from grassroots to the political arena. Our speakers are welcome by Members of Parliament, Councillors and Assembly Members. They respect us, further our work and praise our efforts.

Sending a gentle hug.

[Sleepybunny in reply to Narwhal10]

I might at some point contact the WI and ask them to run a campaign to raise awareness of B12 deficiency.

WI Campaigns (UK)

thewi.org.uk/campaigns

[Narwhal10 in reply to Sleepybunny]

Fab. It is a great idea.

I know Katrina (brain fog, I have forgotten her surname, what a doughnut) was hoping to put a presentation together amongst ALL the million other things.

Thank you Sleepybunny where would we all be without here ?

[Sleepybunny in reply to Narwhal10]

I'm not currently a WI member but hoping to join. Maybe forum members who are WI members could get a PAS speaker at one of their meetings.

I'm sure PASadmin mentioned PAS could provide speakers.

PAS Contact Details

pernicious-anaemia-society....

[Mixteca in reply to RoseFlowerDew]

You may be interested in this audiobook, The Lady's Handbook for her Mysterious Illness. My sister bought me the actual book but I can't read it now, I don't think I'm ready yet.

audiobooks.co.uk/audiobook/...

[Myanna23 in reply to Mixteca]

Yes Mixteca, that is such a unbelievable fascinating book, every one should read this, there will be something in the book that will resonate with most of us. Ps, the author Sarah Ramey, is also a beautiful singer known as Wolf Larsen, just listen to.....'If I be wrong,' just the most beautiful song, I have ever heard.

[EiCa]

Narwhal,

Thank you so much for putting this problem out in the open. I have felt for a very long time that my problems have been marginalized and/or dismissed because I am a (small, thin) woman. (I say small and thin because that comes with its own judgment/marginalization itself)

The most recent thing, and the most serious thing that has happened recently has to do with heart problems. My heart has been acting up, and I was short of breath and having pretty bad chest pain, so I very reluctantly went to the ER. They did an EKG which showed signs of "sinus infarct" (heart attack) date unknown. (this was written on the finding on the EKG print-out) I also had an electrocardiogram which showed abnormal results, differing from two others in the last 6 months. (I had had some fluid in the pericardium so they were monitoring me) There was not fluid, thank heavens, but it showed abnormal findings in my aorta area...25% above high range. This was chalked up to computer error, misplacement of the leads, and the fact that "you are a small, thin woman and your bloodwork is good." THERE IS NO WAY they would have sent a man home with these test results. They did not even refer me to a cardiologist. Meanwhile I have been having heart palpitations that I have never had before. I don't know what to do. My PCP went along with what the ER said. I went to another doctor who told me he didn't know enough about this particular abnormality to explain it. My cardiologist signed off on the report so there's no use going to her. I do not feel or think anyone is looking beyond me being a small thin woman. I am still symptomatic. I need someone to look at the big picture. Unfortunately, around here, the doctors all read each others' notes and are biased. I repeat. If this were my husband, he would have been admitted with these results.

When I went for another opinion, to a doctor I respect, and he said he seldom sees this heart pattern or these results and if he does, it is usually women. I told him that is because men (no offense to the pro-active men here) often just don't act on things they should. What I really wanted to say is, "if I was a man, you would be taking this much more seriously."

If I try to go out of this system, they will want reports/scans/etc. They will be influenced by the findings of the doctors I have seen. I definitely think being a woman has exerted unfair and negligent bias on me.

As you say, Narwhal, I have been, and continue to experience gaslighting. I don't know exactly what is going to get any doctor's attention, but so far they are all good with my consistently abnormal readings. At least the fluid in the pericardium is gone. It was there for 9 months. Perhaps it did some permanent heart damage.

Thank you for speaking out on this. It is 2023 and women are STILL not being treated equally in the medical field. My apologies to any male practitioners and/or fellow B12 members who are equally open to men/women and their medical issues.

[Narwhal10 in reply to EiCa]

I will reply tomorrow.

I am extremely sorry that you are unwell and have been let down.

I am no means a cardiologist or doctor but I have read a few ECG’s in my time. I appreciate that being small and thin woman is not a VALID excuse to discount abnormalities. I will ponder some and maybe think of way to move forward for you. 😘

[EiCa in reply to Narwhal10]

Oh, Narwhal, that is so kind. I was not asking for help, though if anything comes to you I would appreciate it. If not, I was just (I guess passionately) agreeing with you.

[Narwhal10 in reply to EiCa]

I was facilitating a safe space for people to discuss their experiences and the emotional toll that illnesses, disease or conditions has on us. There are many aspects to illness.

Know that you are very much thought of and thank you for having the courage to speak out. You have trusted us with what you have been subjected to.

I’m still thinking. This one, I think I need to discuss with a couple of mates and I understand you are in the USA. Forgive me if I have that wrong sometimes the wonky brain does its own thing. Half an hour later, Eureka it’s called a potato .

😘

[EiCa in reply to Narwhal10]

Yes. I am in the states. When, and if, you have the time I would be very grateful to hear the opinion of you and your friends. I am not sure, because of the bias I have experienced and is in my records, how to pursue an unbiased opinion/treatment etc. It is very scary to live with this uncertainty and to be made to feel embarrassed by continuing to seek answers.

[Narwhal10 in reply to EiCa]

Hi EiCa,

So, I establish a greater understander of the U.S. Health Care system that you receive. I would be grateful if you would kindly inform me of whether you receive Medicare or have private health insurance. This is because all of this influences the level of care you receive.

Please feel free to private message me if you do not want to share in the public domain.

So, on my profile, you will see that my first degree was a computer Science and Information Systems. So, I understand all types of systems, then I look at the processes involved and then I continue investigating. Asking other experts questions. Then, I think, yep, there’s the massive gap that EiCa can drive a Hummer through to obtain good Health Care.

So, think of it, like an architect showing plans to a Fore Man. I come along, No, mate, that’s up an unsafe build. It will collapse. You have not got the Basic right here and here.

😘

Basic is a computer programming language.

[EiCa in reply to Narwhal10]

I have Medicare and a supplement with good coverage. That said, Medicare providers are generally not very good...they don't get reimbursed enough to spend enough time with a patient. I go to a primary care doctor and pay out-of-pocket for her services. She couldn't afford to work for Medicare rates any more. She is expensive but listens well. She acquiesces to the specialists, though. I think she is rather hesitant to disagree with them. Thank you for your interest, Narwhal.

[Narwhal10 in reply to EiCa]

I am still thinking, you have not been forgotten. Plus, juggling this silly illness.

😘

[Hedgehogs15]

Absolutely spot on. Thank you for taking time to do this for us x

[Cherylclaire Forum Support]

I do not agree that taking a man along to a GP appointment is the answer.

None of us should find it necessary to rely on a male companion, not if we are expecting to be treated with the same respect as a male patient would be given.

Any GP, male or female, should be capable of giving equal value to both their male and female patients. We have the right to ask for a second opinion or place a complaint against any GP not yet able to do that much.

The likely result of taking a man to an appointment at which we are expecting the GP to treat us with less respect is that the GP addresses all comments and questions to that male companion.

At which point, you may as well walk out and leave them both to it !

[Narwhal10 in reply to Cherylclaire]

I agree, it was a mere suggestion.

I have been escorted by a man on 3 occasions. I needed somebody to push my wheelchair and hold me up as I could not coordinate my body.

My nearest and dearest are men. 😘

[Cherylclaire Forum Support]

No worries. I just want to see over 50% of the population get listened to, believed and respected in the same way at an appointment - by all the GPs. Not just the bright ones !