What follows is a bit long. Some thoughts I'd like to share that are important to me.
I discovered this forum just about a year ago and am so grateful for all the benefits being involved here has brought into my life. While I’ve appreciated the kindness and support of so many forum members in my time here, a recent disappointing experience has prompted me to write this post. Before I sign off to go on a break from the forum, I wanted to share a bit about why I’m posting the info to follow.
I don’t expect others to understand or really even to care about this, but it’s important to me to express these ideas.
If I had to choose one aspect of having and getting treatment for AF that has been the most difficult, it is this one word:
Dismissiveness.
I understand why people can be dismissive; they don’t have time, are stressed, they just really don’t care, they’re not interested in learning, etc. I’ll spare the details, but in the course of seeking care and dealing with insurance, I’ve had many frustrating and time-consuming instances of having my concerns be dismissed by doctors, office staff, billing offices, and insurance. It’s taken so much time and energy to deal with it, along with the physical discomfort of not being helped or of being given the wrong overpowering medication. Never mind the emotional toll.
Being listened to and heard makes all the difference.
I do my best to write posts here that might be useful to others. I’ve appreciated what I’ve learned and so have wanted to give back when I can. I greatly appreciate the many warm, supportive responses I’ve received. Some other responses have been different; I respect a differing opinion, but I don't like being told what my personal experience has been, what my feelings are, what my intentions are, what I’m doing. Having my personal experience be “corrected” or analyzed or just being criticized.
I don’t care for any of that and recently I realized just how much all the various instances of being dismissed in my care and elsewhere have bugged me. Like enough is enough.
I’ve learned from experience that what I need to do to care for my heart and health in general is to speak up for myself and to say so. To push back in certain select situations. I give a lot of thought to whether to bother to speak up or not before doing it. There are sometimes comments and posts that I steer clear of for that very reason.
I have been aware for a while now that it is common enough for women to have their concerns be dismissed by doctors that it is actually a topic of research. Some women have even died as a result of having their concerns dismissed. This type of dismissiveness has certainly been a challenge in my own AF treatment. It’s why I’m especially grateful for my new EP, who does listen and “get” me. Such a difference that makes!
This reality that women can face, of being dismissed by doctors, is something I mentioned in a comment the other day to a post. Because of past experience, the general issue in health care, and what had been said in the post and comments, I chose to mention it. A dynamic unfolded that’s happened just a few times to me over the months, in that a person clearly doesn’t care for what I’ve said and the response to my correcting of the misinformation in their response is met with a personal attack. Sometimes repeated ones.
This time I chose to report the situation because I thought the person had crossed a line. I did as I’d been guided to do to report something, which I quickly learned was a mistake, or at least fruitless.
I was accused of “arguing” in that post, which was not at all what I was doing. I attempted to explain my intention in bringing up the challenges women face being dismissed by male doctors and was accused of “playing the gender card.”
This is one reason I’ve chosen to share the research below.
In response to this comment, my efforts to seek connection, perhaps understanding, some sort of meeting of the minds, through some humor and warmth and explanation with the forum leadership, were quickly shut down and I was accused of overblowing the situation. References had been made to comments about how women bring on their own problems by looking nice in the doctor’s office.
In short, I was dismissed.
It’s not entirely clear to me if the use of “troll” in a recent post title about this situation was intended to describe me specifically, but regardless, it didn’t exactly help.
I’m tired of being dismissed and just need to say that out loud. I don’t like how I was treated here recently by the leadership. I felt disrespected. The organization in charge of the forum hasn’t responded to my concerns, so I guess they are probably fine with the situation, too.
They certainly have every right to do that.
As an American woman, I've observed that all the changes in our country these days have women speaking up so much more. It’s just in the air. Perhaps this is considered rude in other countries. Perhaps others here hate this, dislike me, dislike my opinions. I am not intentionally trying to anger others with my words.
I'm trying to heal and to help if I can.
Whether it’s doctors, students, commenters, whoever, I am tired of it. I need to say it to put it behind me, whether or not anyone else reads it, hears it, or cares. I would so much rather forge connections and explore ideas, and that does not and should not mean that I can’t have an opinion or disagree or speak up for myself. If those values are not shared by the people in charge here, so be it. But the flat-out refusal to even try to understand me was quite offensive to me.
I’d like to share the following research on women, dismissiveness and health care, which I find very interesting. Perhaps others might, too.
I found this quote interesting: “I can’t tell you how many women I’ve seen who have gone to see numerous doctors, only to be told their issues were stress-related or all in their heads,” says Dr. Fiona Gupta, a neurologist and director of wellness and health in the department of neurosurgery at the Icahn School of Medicine at Mount Sinai in New York City. “Many of these patients were later diagnosed with serious neurological problems, like multiple sclerosis and Parkinson’s disease. They knew something was wrong, but had been discounted and instructed not to trust their own intuition.”
"It’s a well-known fact that men and women tend to express pain, whether physical or psychological, in different ways. They’re also treated differently because of it. Evidence shows women are often deemed “overly dramatic” and dismissed by medical professionals, which has deadly consequences.
I’ve really enjoyed so many conversations here and hope that perhaps some of what I’ve shared over the months might have been of interest or helpful. What I've learned here has truly changed my life for the better.
The dynamic of caring about a topic and being met with the behavior I described and then having my concerns be so resoundingly disrespected makes the thought of involvement at the moment somewhat unpleasant, on top of the stress of it triggering more episodes, which it has already done. This definitely doesn’t and hasn’t happened frequently, but especially now, as I contemplate a third ablation, I don’t really have the energy for it.
I think that fundamentally all that anybody wants is to be heard. That is what I have been trying to say and really all I have wanted from my involvement here.
To be heard, to connect, to heal.
Best wishes to everyone. Thank you to those who have been so kind to me and who have expressed their affection for the "Real Nella." 😻
Sorry to hear about your sad experience - hope the break will be a short one. I enjoyed reading your posts and want you to know that you'll be missed...
Hi Nella I didn't see the incident to which you refer. I have found this to be a wonderful supportive site, ok we may not like or agree with every response we get to our posts, but thats fine by me I like a range of views it gives perspective to things. If something in particularly annoys well count to ten and walk away I also try to remember that many using this site may not be feeling well and this can make them grumpy.
Try not to let little incidents uset you, life is too short and it is not good for AFers to get upset .
Doodle68, I appreciate your good intentions, but I do believe you might have missed my point.
I’m going to share general thoughts in response to your comment. I believe that it might be helpful.
To clarify, I am well aware that with AF, one needs to not get worked up about every little thing. And I am mindful of that and so do it to the best of my ability.
I am aware that in any online forum, chances are there will be the occasional arrogant, know-it-all, condescending jerk, possibly a decent person with a gaping blind spot, or who is just feeling miserable from symptoms, etc. I get that.
The reason I’ve chosen to do what I’ve done is this-and it’s very important to me.
The issue of women being dismissed is real, exhausting, costly, unpleasant, and unfair. 1000 little cuts of it over time add up.
I recently spent an entire afternoon discovering something about the cool new kind of ablation I may be a candidate for.
In the insanity that is the American health care system, my particular insurance plan is not accepted by the specialist who is part of the same Stanford system as my EP. Which means he’s out-of-network: I can pay thousands more or go through bureaucratic hoops to get it paid for. I’m good at that, but it is sheer insanity that we have to do this stuff. So much dismissiveness involved in even getting answers.
I am tired of the major part of medical decisions having to be financial.
Back to my other point.
I’m a teacher and it is a profound part of me to feel a sense of advocacy and protectiveness toward those who are vulnerable, along with opening minds. Also, creating a safe environment is quite important to me and I do this in my classrooms, which typically include people from at least a dozen different countries, who all manage to get along, respect each other, and become friends.
These guys (sorry guys, they do tend to be guys!) who roll in and want to tell folks struggling with fear and decisions to just do what they did! Just get over it, come on, hop to it! I’d love to slap them, but instead I just stay away. So not worth engaging.
What I shared about in my post has these elements—
Being fed up by the accumulation of dismissive slaps over time - from health care, life, just everything.
Being fed up by the particular guy (Mr. “I intentionally said this not to show empathy to anyone!” - enough said), who persisted in his personal attacks on me.
The response of the leadership I took it to, in the hope of being supported in my desire to have the guy be educated and a safe space ensured. The response was actually worse than Mr. Anti-Empathy—being slapped down, profoundly disrespected, and then belittled by the insinuation that I am somehow a “troll” in his publishing a post on the matter, having just slapped me down and blown me off. Feel free to search on that. The prior conversation was via message. Really don’t know what the intention was in choosing that word, but for someone being highly critical of me allegedly adding fuel to fire, it was a curious choice.
Forums will always have miscommunications and the occasional disagreeable type.
My concern after the other stuff I mentioned, involves being treated that way by the forum leadership.
I don’t think it’s a matter of a person just having a bad day or being in a bad mood. Leadership sets the tone. Is it a safe environment or not? Are women respected or not?
Do we care here, as a community, about dismissiveness? Can we not have a higher standard and simply point out to folks who don’t get it that it’s not OK to be doing these things? Like telling people what to do...making sexist comments....psychoanalyzing others, etc.
What if we ensured as a community that this is a place that’s different from the health care systems?
That said, I’m well aware that I’m not in charge. It’s not my forum, not my call, not my classroom. I definitely respect that, but have no respect for how I was treated. None.
One of my favorite books is by Dr. Gabor Mate, “When the Body Says No.” My favorite line in that book, my mantra for dealing with AF, “Where do I need to say No so that my body doesn’t have to do it for me?”
I take so many things less seriously in life now - and - I know that it is the speaking up at certain points, guided by my intuition, that is actually crucial to my healing and my heart. After decades of being “nice” and being taken advantage of in different ways.
What Dr. Mate writes about anger was life-changing. It’s actually the “not” speaking up about important matters that’s stressful for the heart.
I’ll respond to other comments shortly, but wanted to clarify these thoughts because they are important.
It’s not that I’m in a tizzy about some dumb little thing some dumb guy said. It’s actually bigger than that, as I’ve shared. Speaking up about it is an important part of putting it behind me.
Appreciate very much your good intentions and wishes and taking the time to write and hope you understand where I’m coming from.
Best wishes to you.
Can I echo faridaro’s comments Nella.
Obviously I am aware of what happened although I didn’t read all the stuff connected with the post concerned. As someone who contributes regularly to this forum, I know from personal experience, how easy it is to inadvertently and unintentionally write something which others may take the wrong way. This often results in an exchange of words which achieves little and often detracts from the real purpose of the forum, i.e. to help folk deal with their AF related problems, which is what you have done many times. There will always be people who take what is written the wrong way or blatantly disagree with what has been said and before you can say “boo to a goose” the whole thing is blown up out of all proportion and a situation develops like the one you have experienced and describe so eloquently.
You and I have spoken many times and I have always valued your comments to me and your contributions to the forum. Whatever the reasons are, it is very sad that you feel the way you clearly do and also that you feel the need to break away from this forum. Hopefully, when the dust has settled you will come back here where you belong.
In the meantime, stay well and please feel free to contact me anytime, best wishes, John....😻
in reply to
Thanks so much, Flapjack! The Real Miss Nella is sitting next to me as I write, suckling on her "blankie." She sends her regards.
One must navigate rudeness and mean-spiritedness out in the world from time to time, as it will probably always just be there as part of the human condition. It takes a toll and I relish a break from the prospect of it popping up here, which I know is simply part of the reality of participating in life online. I will probably keep in touch with folks I know via Message.
I've always appreciated your kindness and good humor. Thank you for that. 😻
I've always thoroughly enjoyed reading your thought provoking posts and am sorry to hear you're taking a break. Please don't stay away too long as we'll miss you.
Well said Nella. It is bad enough being dismissed by medical professionals ( both male and female, as the overriding culture has been formed by male dominance of the medical profession and it will be decades before the increase in numbers of women redresses this) without having to deal with people on forums suggesting one's problems are in the head when one is hoping for support and positive advice.
I am not aware of the issues you have faced here but hope you feel able to return to the forum again after a break. In the meantime I wish you good health and send you best wishes. X
Hi TamlaMotown, thanks for your kind words. I have so enjoyed learning that the leads in Hamilton, the musical, which I've seen twice this summer, were also in Motown the Musical. ❤️😻🎼 Those voices!
Feel free to message me - take care! 😻
So sorry that dismissiveness has entered your life. Ive felt it in the medical field. I worked 45 yr as an RN here in the US. Ive seen so many changes in healthcare. Now young docs are coming out of medical school oweing $200,000 plus for their education, cannot afford to open their own practice, get sucked in to working for hospitals or large groups all with quotas to meet. Productivity is the buzz word, work quick make no mistakes. The older docs hate the changes in regulations, much less reimbursements, much more required from the government... they grow weary and retire early. Im not defending their dismissiveness at all, just explaining my perspective of the huge mess we call healthcare.
As far as being dismissed here, I am extremely sorry as this forum generally is so kind and helpful. People are people and maybe not everyone comes from an empathetic position.
I hope you come back one day as there are more of us trying to be helpful than not. We need your input also. Hugs💜
in reply to
Thanks, Hoski. Yep, it's a mess. I was so impressed by Sequoia Hospital here in my area, part of Dignity Health, whose branding is Humankindness. I'm sure it's not a perfect world, but I was amazed to see everyone I interacted with really be kind. Making it a priority is key, IMHO. There are plenty of folks who are able to find a way to be kind.
I did have one amazing experience with my dermatologist. She hadn't discussed a cream & it was before I was fully 'woke' on dealing with docs....🤣.....and the steroids totally messed with me. Along with other issues, I left her a negative Yelp review, she called me and we had quite a fascinating conversation. Kept butting heads... Me: "That would be exactly the wrong thing to say!!!!" She: "Why? I don't get it? But I really do care!" Till eventually she did get it. It was incredibly cool. I love that kind of thing. Said she was going to change some procedures in her practice and thanked me for opening her mind.
Really fun to see people open their minds, seek understanding, grow, connect. Love that with my students. So disappointed when people choose to be solidly unteachable!!!! Such is life.
I didn’t see the exchange of views you mentioned and therefore it passed me by.
I concur with others that it is a shame that you wish to withdraw, but I do understand the feelings of dismissiveness you describe.
I have recently had to deal with my own health conditions unrelated to AF together with trying to support my mother in law who has dementia, diabetes and stage 4 Cervical Cancer. Dealing with the lack of communication from doctors, nurses and social workers has been so stressful.
If I don’t get AF again soon I think it will be a miracle.
Take care, if you return you know you will be welcome by many.
Sounds like you have your hands full! Yes, it takes so much energy to try to get the information needed, doesn't it? Wishing you comfort and support as you sort things out with the health issues. Your mother-in-law is so lucky to have you helping her.
This is the first time I have posted on this forum , since getting a PAF diagnosis last year I have found this forum a life saver as having Af has been a lonely, scary experience for me , I have always enjoyed your posts and like yourself , I like to get a wide range of opinion . I do agree with you that in the medical profession there is a dismissiveness towards women in general . I am sorry that you have decided to take break but hope that you return soon. Your own wellbeing is more important.
Yes, it can be so helpful to get support here when going through AF, especially at the beginning.
I appreciate your wise words....my own wellbeing is more important and I'm doing what I need to do.
Take care and keep reaching out for support as you feel so called to do. Also, feel free to reach out and comment to those who post things you like. Truth be told, a lot of times, I haven't really known if what I've shared has been that helpful because people don't always say much in response. It's nice to have that interaction, I find, when it's positive.
Sorry that the experiences you had on here appear to have passed me by.
I think sometimes, regular and persistent contributors to the forum (myself included - in the top 10 regular contributors) can often come across as abrupt or as if we are shutting someone down and I'm fairly sure (certainly for me personally) that it's not intentional.
It's hard when people who have been here a lot seen it done it and experienced it end up repeating themselves for similar or same answers people may have year on year - and I think people have been guilty in the past of being concise at the expense of courteous.
I do hope you stay in touch with the community, passing on valuable experience and seeking support. You may think your own experiences are irrelaevent to the masses or you don't know enough to help someone, or get into a question too late to make a difference but it does matter to someone when you've shared your support or help even if someone has "got there first"
Regarding the intentions of the people I called out....I encourage you to read my response to doodle68’s comment.
We’re all adults (presumably), capable of owning our choices and apologizing if we stumble our way into being hurtful. When others share concerns and we belittle them and slap them away....
That’s something different.
Further, IMHO, if a person is burned out or whatever it is that makes them short with others who are vulnerable , they need to deal with that and not take it out on others. Take a break, address it. Those are my values, anyway. And it was the toughest part of dealing with AF when teaching...not to lash out at my students when I was miserable.
I feel strongly about that.
First do no harm.
We all screw up. We are human. But what do we do next? Slap others away and blame them for their problems? Or perhaps listen, learn something and maybe show compassion?
That’s what I try to do and I’ve learned to steer clear of those who don’t share my values on that.
Thanks for your concern.
Best wishes.
in reply to
One more thing, Jedi.....the trolling comment was made on the heels of my telling the person that I didn't care for his refusal to even try to understand me and that I didn't care for the lack of kindness, empathy, or compassion in the conversation.
I do appreciate your kindness and concern. I've always sensed a lot of kindness from your comments over the months.
And your comment would be an example of exactly why I am signing off, John!
Perhaps I have enough wisdom, self-knowledge, common sense, and trust in myself to know and do what’s best for me.
Please don’t continue the conversation.
It’s clear to me that you just don’t get it!
😂😂😂😂😂😂😂
The kindest things I can say to you...
I appreciate your intention and willingness to reach out and be supportive.
There is some way of thinking about this and responding that also shows some kind of disconnect with what I said. I don't want to get into the details of it; not sensing openness to that and not up for it anyway.
I have been part of this forum for around 8 years and have received unbelievable amounts of useful advice and emotional support. These days I do more lurking than posting and only comment if I can say something helpful that nobody else has said but whenever I need support it is to this forum I return as only here can I talk openly and honestly about how this dratted AF affects me.
I didnt see any of the posts that have concerned and upset you so cant comment but I hope you will feel you can return to us when and if you need us. It is often quite useful to take a break and to come back renewed and refreshed.
What you have shared in your posts here has been very informative, interesting and helpful. I especially want to thank you for courteously reaching out to help others... even when some are just plain rude.
It’s been a pleasure to follow you here (kind of funny, but your posts were the only ones I’d followed so far). I wish you great health, happiness. and an abundance of people who take the time to listen and care, especially doctors.
A...thanks so much, PirateJeff! I think you might have been the first person to reach out to me when I first came here. I appreciate your kindness and support. And yes, you really do seem to get it.
I'm very grateful for all the kindness and support here and want to cultivate connections with something I do not have enough of here in my life at the moment - as you put it so well, an abundance of people who take the time to listen and care. So happy with my current docs, who do, fortunately!
In spite of the many kind and supportive people here, I relish a break from the prospect of the "just plain rude" popping up as they do, which is a risk one must take in order to participate in anything online. Need the time to heal from being pummeled in that particular way in various contexts over time.
Feel free to keep in touch. I'd like to keep up with individuals by Message...that goes to all the kind people who have posted, if you read this comment! One-on-one conversations, just checking in, etc., would be nice.
Thank you, Nella, for the links to the articles – all of which made for very interesting and, sadly, unsurprising reading. My own example would be that of my sister and her husband – they both have the same GP however the contrast in the response that they receive from him is quite pronounced. When her husband attends he appears to require only a single visit in order to be listened to and then appropriately prescribed, sent for tests, referred to a Specialist etc. However, she is nearly always sent away and told to ‘wait and see’. It has almost become an (unfunny) joke that for every single appointment her husband makes with the GP it will be necessary for her to make two. They are both intelligent professionals and are therefore equally able to state their case. Look after your health and return when you can as the Forum will be poorer without you.
Same happens to my husband and me, same GP's same health issues, hubby is tested, referred, treated, given expensive meds with no question, I'm told it's "my age" "anxiety" "depression" blah blah blah and I get nowhere, I actually need a medication which is very expensive, he is prescribed it and I was refused despite recommendation from my Consultant !!
I wonder how often this is happening. You and my sister are only aware because you are in a position to directly compare. Now, when my sister needs to see the GP she is almost preparing as though she is due to sit an exam, whereas her husband just goes in with no preparation simply taking it for granted that he will be listened to 😊
It is just ridiculous, isn't it? So frustrating to have to deal with being sick, caring about one's health, and then realizing the person you are supposed to entrust with that doesn't even truly see you. It makes it all worse!
Perhaps you could send the GP the links to the articles? 😊
Or look for a new GP.
Or, as I shared in another response, try what I did, which was to be direct and talk to the doc about it. I did end up leaving her care, but it was a great experience overall because she did really, truly care about me as her patient, but had this enormous intellectual wall built up that got in the way of really "seeing" me. She was willing to duke it out and take down that wall. It was quite something to experience and I admire her greatly for her willingness.
You never know! That's why I speak up when I can. If my concerns fall on deaf ears (like here), that tells me a whole lot about the person and I know I need to move on to find a kinder, more caring connection that's a better match for me.
One of the lady GPs is much better and is trying to help me but it's not easy getting an appt with her. I've found many Consultants to be even worse than some of the GP's ! I have more battles coming in the next few weeks and months, gets tiring !
You're welcome, Marytew. Interestingly, you are the only person in all the responses who has mentioned actually reading them. I don't have any indication that the folks who could most benefit from learning from them have any intention of reading them or of perhaps even caring about the issue.
So perhaps the "gender card" and "it's all in your head, honey" mentality will remain alive and well at the forum!
It was eye-roll-worthy to receive a response in which I was heaped with how awful it is for men to be dismissed....fascinating, though, isn't it? 😂
By the way, I will respect a confidence in not sharing too much, but I am not the only person who has been treated at the forum in the manner I described, as I learned from another member who reached out to me privately. Not the exact same details, obviously, but a similar dynamic, of being treated badly, reporting, and having the response be as bad, if not worse than the original experience. All in the context of being sick and vulnerable.
Best wishes to you. Keep speaking up and insisting on being taken seriously! Or keep looking for a doc who will. Your health and well-being are worth it!
I agree, Nella, it is fascinating – and it is also very frustrating. I am also very sorry to hear that someone else has had a similar experience to you. It was a brave and important post which I am glad you made (although it would have been better if there had been no reason to). I send you my best wishes also 😊
I’m so sorry to hear you have not felt supported it’s very easy for people to be rude and unkind online, I do wonder at times if people would make such comments in a face to face situation, who knows! However, I do know from personal experience that women being dismissed/not listened to by medical professionals has been an issue as this resulted in my mum dying far too young (just 67)!
Good luck Hidden and I look forward to reading your posts again 😊
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I didn't see the incident to which you refer. I have found this to be a wonderful supportive site, ok we may not like or agree with every response we get to our posts, but thats fine by me I like a range of views it gives perspective to things. If something in particularly annoys well count to ten and walk away 
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