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.
“Dismissed: The Health Risk of Being a Woman”
today.com/health/dismissed-...
“When Doctors Downplay Women’s Health Concerns”
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.”
nytimes.com/2018/05/03/well...
And from this article:
"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.
"
huffpost.com/entry/doctors-...
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." 😻
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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