From heart disease to IUDs: How doctors dismiss women’s pain, WaPo

Features Ilene Ruhoy and EDS

https://wapo.st/3iVKGqd

 

https://twitter.com/user/status/1602769537610690561

 

I have read multiple articles discussing women's pain and medical treatment generally. But nothing ever changes. I don't think it will in my lifetime.

 

I feel positive, as yes, more info is getting out there. But I'm also still concerned, as medicine is very slow to change.

What I can see is moving ahead is women's knowledge, and the awareness that they don't have to just put up with debilitating symptoms anymore.

A few months ago there was a nationally broadcast CBC Radio program about endometriosis. It's good this issue is reaching more ears.

ETA: Awareness development has been on a long road, and will continue so to be.

This thread reminds me about my first copy of the book, Our Bodies Ourselves, by the Boston Women's Health Collective. I bought that book in about 1978/79.

 

And yet so many female patients are told they shouldn't engage with patient groups on the web. I read something today, can't remember where, where a female patient was told "she knew too much". The patient was a doctor! Apparently doctors treating female patients only want to deal with the timid and stupid ones.

 

I knew of one person who experienced that. An ME/CFS specialist told her, "Don't join any support groups or you'll get worse." It's absurd. Joining support groups and reading ME-Pedia has helped me receive better medical care.

Because of advocacy, I'm able to describe my illness in ways people take seriously. I used to say, "I'm too tired to brush my teeth sometimes," now I say, "I've been consistently unable to do my normal daily activities for four years." Instead of saying, "Exercising makes me tired for days," I might say, "Exercising, or even socializing, leaves me debilitated for days." And so on.

 

Been there...

 

You make a very good point.

Once more information came out about ME, it helped my understanding, as well as communication with practitioners.

Going through ME reference material, I have learned to explain symptoms and function in terms of categories such as Basic Activities of Daily Living etc. This in turn may assist physicians have a better understanding.

As for ME support groups, they can act as clearing houses for information. Early on, that's where I got pretty much all my info, which included the research that had been done, and socio-political issues.

Without that group, I would have had to use up precious energy and cognition trying to hunt down the little outside information available at the time.

Any physician who says don't join a support group, looks to me like they would prefer their patient remain in the dark about the whole thing.

 

Sad thread


https://twitter.com/user/status/1603291684007075840

 

Regardless of female/male issues, medicine in general is failing to communicate the basics determinants of activity levels. Despite seeing GPs, consultants specialist ME service, I only came across the concepts of PEM, orthostatic intolerance, sensory issues and food intolerances in relation to ME through on line support groups. These are all concepts necessary to understand the day to day variation in my ME and necessary to help manage my condition. I had had pacing explained to me, but pacing can only be effective if there is an understanding of the contribution of these other issues over and above how much you physically do.

Though I agree I have had more considerate treatment and fewer insults than many female patients, I think that all patients suffer from medical ignorance (deliberate or otherwise) that goes beyond medical science’s failure to identify the aetiology of or any curative treatment for ME. The UK specialist ME services particularly illustrate medicine’s failure to develop a body of understanding on what practical steps on a day to day basis help manage our condition. If you want to know about what mobility aids might help when, or what compression garments to wear to support orthostatic issues, etc, there is little point going to a specialist service or your doctor, but rather consult other patients online

 

Exactly.

 

To add to my earlier post to @RedFox, learning a small bit from ME literature about how physicians assess patients' function and ability/disability, assisted me in communicating with my doctors. And in turn, assisted them.

I accessed this assessment info on the advice of ME support groups, not medical staff.

Those who advise against engaging with ME support groups, may be well aware of the effective support and information these groups provide.

 

My GP (a fema1e) during a home visit regarding my continued chest infection prob1em, asked me whether my 'breath1essness' (which is severe, I am 1itera11y gasping for air on taking a few steps) cou1d be due to 'deconditioning'! This is despite her seeing me experience it (when I wa1ked up the stairs to my bedroom) and after she had been given my sputum samp1e (ye11ow gunk and mi1ky 1iquid). Apparent1y my recent chest x-ray was 'c1ear' - however, she cou1d hear the wheezing/grumb1ing with her stethoscope today.

I can't imagine a patient with any other condition apart from ME/CFS, having the 'deconditioning' suggestion put to them in these medica1 circumstances (the chest infection has gone on for a year now, a1though it seems to be in my upper chest now, rather than 1ower down as it was during every previous GP visit).

I exp1ained to her I have had ME for 30 years, have been comp1ete1y bedbound in previous decades for protracted periods and even with my severe asthma have never needed to gasp for air when wa1king just a few steps, unti1 the pneumonia began in January this year. I a1so mentioned that the effects of exertion (i.e. PEM) is de1ayed, not immediate (to which she nodded, because obvious1y she knows this...). I'm pretty sure 'extreme, debi1itating, chronic breath1essness with periods of doub1ing over, gasping for air on the most minor exertion' isn't part of the symptom profi1e of ME/CFS, even for severe sufferers!

I doubt this is a sexist issue, I agree with Peter on this shocking 1ack of medica1 understanding of ME. I'm fortunate my asthma was diagnosed by a consu1tant whi1st I was sti11 working, I dread to think what wou1d happen if it had started when I was housebound/bedbound, if today's experience is anything to go by.

 

Doctors are just naturally fragile about this, even to men. It's far more prevalent with women but I was told I was using big words for saying I thought my autonomic nervous system was messed up. I didn't know about anything chronic illness at the time, had never heard of dysautonomia or any of this. Some of this stuff is just obvious. Like you don't need to know anything about fluid dynamics to understand a very dark sky means it's gonna rain.

Big words: autonomic nervous system. Good grief. Not to be pedantic but most of the concepts I dealt with as a software developer are far more complex than the simple broad notion of what the ANS is and does. It really seems as if physicians still think they're the only educated people around. Which was somewhat true for centuries, hasn't been for decades without adjusting to it.

 

@Simbindi

Your chest infection lingering so long sounds terrible.

Hope you can get a resolution soon.

Take care, and best wishes.

 

A gynecologist once asked me if I weren't being oversensitive to my symptoms. I found out later from a different doctor who tied my tubes that I had endometriosis, which can be excruciating. He burned it off while doing the tubal ligation.

The kicker is that the 1st gynecologist who asked that totally inappropriate question is female. It's really disheartening when women absorb misogyny to the point that they show contempt to other women.

 

I realised a long time ago that people who have never suffered from long-term and severe chronic pain always take it for granted that they would cope with it better than I do. Many people seem to secretly think of themselves as being heroic, brave, and stoical, while they think of me as being a cowardly wimp. I would guess that many doctors have thought I was a cowardly wimp too.