What Happened to Doctors?

Posted by stumpedandgrumped @stumpedandgrumped, Mar 7 12:30pm

This is a bit of a rant, so I apologize in advance. But I believe that Long COVID has shone a light on the failings of the medical community generally.

Doctors are, at the most basic level, troubleshooters. Their job is to identify a problem and then determine an appropriate course of action. They share this basic concept with lawyers, IT professionals, and even car mechanics; they all use the same basic framework to find answers.

A lawyer who accepts a case is bound to do their best to find the correct path forward. They cannot simply send you to court with a 'best guess' on the law; they have to spend time researching your issue. If they miss law or fail to prepare, that can be their career done.

IT professionals are the same. If you bring your computer in for repair, they don't spend 15 minutes with you, hand yo ua disk, and tell you to schedule a follow-up if the issue persist... they have to dive into the issue, figure out what is causing it, and provide a fix. Sometimes they're wrong, but they're bound to do their best to solve things.

Then... there are doctors. A typical Long COVID pattern:

You pop in for 15-30 minutes. If you have a good doctor, they've done the reading; they know what your issue is and have reviewed the notes you've provided. If they're mediocre, you spend 10 minutes explaining your issue (never mind the notes you provided) and another 3 waiting for them to take notes. Then, they either give you a guess and send you off, refer you, or tell you to lose weight because something something health.

Your symptoms continue. You go back. Repeat the process, the doctor has to catch up. It becomes clear that between appointments, they've not thought about your issue at all. It takes your inquiries to make progress, you spend weeks waiting... and you end up doing your own research, using your doctor as a way to get the referrals because "something something professional." The referrals shrug, say "not my area" and leave you hanging. As soon as you failed to trigger their specialty, they write you off.

Eventually your doctor either runs out of ideas or refuses to consider re-tests. You're still suffering, but they figure you are walking and talking so... not priority. So, you're left with starting anew with a new doc, running your own experiments, or giving in and hoping your body eventually recovers on its own.

To be clear, this is a failing of the entire medical profession. Doctors should be held to the same standards as lawyers: When you take on a client, you take them as they are. You do not get to stop until you have answers. And they should not be the ones having to spearhead the effort.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

stumpedandgrumped | @stumpedandgrumped | Mar 8 9:16am

In reply to @bmspector "I agree 100%! There is a clear yawning gap between our needs as LC patients and..." + (show)

@bmspector

I agree 100%! There is a clear yawning gap between our needs as LC patients and what the medical community is willing to do. I believe this gap would be best addressed by a multidisciplinary setting where patients could go and have our care centralized with appropriate supports instead of asking us to overcome our inherent biological limits and be our own advocate and care coordinator. This was done back in the day by FDR for Polio patients and makes so much sense for helping us to get back to our lives. However, since it hasn’t been done for post-viral illnesses, I doubt it’s feasible (we all likely would know about it since we all do a ton of research on our condition.). I’ve seen others on here have this idea too.

I think you’ve made a good point - it seems like you’re saying there is no accountability for ensuring we receive the right and appropriate care as there would be for attorneys (I used to be one). I would add that there are no controls to hold doctor’s liable for fulfilling their Hippocratic oath to meet a standard of care that would help us LC patients specifically.

I would also add that this lack of someone digging in to my illness and helping to develop a care plan specific to my needs is something I also found at Mayo. I know that there are tons of studies around the world using microscopic techniques to identify problems that were done well before I ever went there and I have to say I was disappointed that I was given a battery of “standard tests” - like a check the box exercise - and given a diagnosis that is vague with a long list of recommendations that may or may not help. This is specific to the specialty clinics as my neurologist and allergist there are caring enough to help me as best as they can. However, despite all that testing, I still don’t know what’s wrong with me. So, if Mayo is supposed to “solve the unsolvable,” people who go there for LC care are going to be disappointed.

In any event, let’s hope someone soon defines a standard of care that allows for ANSWERS that will hold the medical community accountable.

Jump to this post

"...it seems like you’re saying there is no accountability for ensuring we receive the right and appropriate care as there would be for attorneys (I used to be one)."

That is absolutely what I am saying. Arguably, spending a mere 15 minutes to address a months-long, complex issue falls well below an acceptable standard of care. Some of the good doctors I have spoken to understand that and schedule appropriate time; others think they can solve things in the 15 minutes they have set aside (which they are more often than not late for.)

bonniefielding | @bonniefielding | Mar 8 9:21am

AMEN- My Doctor doesn't believe me....My heart felt like it was racing anytime I tried to do the smallest thing which then made it hard to breathe...then a panic attack set in - He literally asked me why I was depressed and what was going on at home to make me depressed.... OMGosh!

mydogsbestfriend | @mydogsbestfriend | Mar 8 9:29am

In reply to @bonniefielding "AMEN- My Doctor doesn't believe me....My heart felt like it was racing anytime I tried to..." + (show)

If a patient is a woman it seems the first thing they ( mds) say is oh, you are depressed or it’s just anxiety. Then they might ask me too, how is your husband? How about listening to ME first since I’m the patient sitting here

stumpedandgrumped | @stumpedandgrumped | Mar 8 9:29am

In reply to @sushicat "I love your rant. Your comparison to other professions is spot on. I feel the medical..." + (show)

@sushicat

I love your rant. Your comparison to other professions is spot on.

I feel the medical profession has been exposed. Oz behind the curtain. In terms of public health, the CDC, and everyday doctors’ unwillingness to educate themselves about LC. It’s a joke, and the bottom line is money. The economy. Not you, and certainly not your wellbeing.

I’m lucky to be in a Post Covid Syndrome clinic at a major hospital in NYC. My LC doctor has openly told me that very, very little is known about the second phase of a covid viral infection (ie Long Covid.) Anyone who tells you they have an answer is wrong. Beware of snake oil salesmen out there, too. It will be at least a decade until what is happening to us will start to be understood.

For now, doctors must:
- Believe their patients. The stories I hear of LC sufferers being dismissed as “anxious” breaks my heart.
- Treat the symptoms. No, there is no drug for LC or treatment protocol. Right now, we must be treated on a by-symptom basis.
- Refer us to specialists. I was referred to a cardiologist, neurologist, and brain neurologist.

This is a sh*tshow, and the CDC’s latest advice on isolation only reinforces the public’s misunderstanding of COVID/LC as no big deal. Probably just anxious people who feel tired, won’t happen to big strong me. This is dangerous misinformation. As most of us here know, one Covid infection can rob you of your entire ability to live your life.

What happens a few years from now, after multiple infections? I recently read each covid infection, no matter how “mild”, with or without long covid, lessens a person’s IQ by an average of 6 points. That’s a lot. Now multiply that by the number of repeat infections. We are going to be in the midst of a mass cognitive disabling event very soon.

That’s just the brain. Now, apply that cumulative damage math to other organs affected by long covid. To the latent viruses that Covid infections reawaken. Some of those viruses cause terrible diseases, and yes, even cancer.

It’s time to take Covid and Long Covid seriously. Especially if you’re young. I’m 54 and grateful I had five decades of life without this hellscape.

Jump to this post

I am lucky enough to have avoided the brain fog issue; arguably, my limitations in other areas have given me more bandwidth to be creative. Having said that, without this constant low-grade worry of "what if theyre missing something" and "when will this clear up" does take a fair bit of daily energy. I had health anxiety before this whole thing began... this has not been a fun time.

Between the medical community being woefully unprepared to deal with a realm health emergency and cross-aisle politicians whose best interests are served by ignoring the issue in an election year (we "beat" COVID after all,) I do not see much hope for treatments. A fair number of LC sufferers are functional, if miserable, so why fix what isn't broken enough to matter>

I -believe- my body is slowly winning its fight. I have no permanent nerve damage that they can tell, my symptoms are lessening and fading, and (as strange as it sounds) my anxiety is coming back; it disappeared during the worst of this because, I suspect, my body just didn't have the energy to be anxious. Whether I fight it off or not, though, someone (perhaps us) needs to hold the medical community responsible. They've overcharged and underdelivered for long enough.

stumpedandgrumped | @stumpedandgrumped | Mar 8 9:33am

In reply to @barbarabell "I saw a rheumatologist when I was at my sickest. While I went over my carefully..." + (show)

Ah, the joy of specialists. My one rheumo visit was terrible too. I came in, guy had clearly not reviewed my notes. Said "why are you here," proceeded to belittle me for seeking rheumo advice for what he believed were nerve issues. Charged me for a repeat STI lab (thanks, sir) and never bothered to follow up.

stumpedandgrumped | @stumpedandgrumped | Mar 8 9:40am

In reply to @bonniefielding "AMEN- My Doctor doesn't believe me....My heart felt like it was racing anytime I tried to..." + (show)

I had better luck getting heard with a concierge. Not that we've solved anything, and I feel like after the novelty of potentially getting a "win" wore off they lost interest, but I now have a huge list of things I am -not- suffering from.

- Vitamin deficiency (No, could use more B and D.)
- Metal Toxicity (No, but lessen fish intake to get away from median)
- STIs (No, but I knew that)
- Tick-borne diseases (No, though I wondered)
- Food allergies (No but apparently I am sensitive to salmon?)
- Guy biome imbalance (Perhaps; awaiting results)
- Autoimmune (None yet)
- MS (brain and spine scans clear)
- Peripheral nerve damage (None detected in tests)
- Anxiety (Yes but you try being off for 10+ months)
- Ancient curse borne of dark magic (I mean, maybe.)

kayabbott | @kayabbott | Mar 8 9:44am

That is great that you are healing. I lost some memories as well (not all were good to keep). I like crossword puzzles (which I suck at due to left temporal lobe damage), wordle, and other games and hobbies. A damaged brain gets tired very quickly so rewiring takes hard work and lots of naps and avoiding stress. If more people were cognizant of the damage that covid can wreak then they would be more resposible at not sharing it (masks, vaccines, etc). Hopefully future variants will be less nasty.

Colleen Young, Connect Director | @colleenyoung | Mar 8 9:46am

@stumpedandgrumped and everyone in this discussion, I get your frustration. Venting can be cathartic.

And I'd also like to use this discussion to ask "what can patients do about it?"

It is a rare person who never needs to see a medical professional. Our health depends, in part, on our relationship with our doctors.

How were you able to work better with your doctor?
How did you get heard with a doctor who seemed unwilling to believe you?
What tips would you offer other patients?

sushicat | @sushicat | Mar 8 9:49am

In reply to @stumpedandgrumped "I am lucky enough to have avoided the brain fog issue; arguably, my limitations in other..." + (show)

I’m glad you’re starting to feel improvements. For me, heart palpitations, vertigo and unusual histamine reactions are the last to go. But it’s not falling-down vertigo, and the palpitations and rashes are much less frequent. I’m grateful to be moving in the right direction (yet remain terrified by the specter of reinfection.)

That’s really interesting about your anxiety. I have always had anxiety, but in addition to my usual anxiety I have major fight-or-flight types of episodes now. Much different than the anxiety attacks I’m used to. Oddly, those started well after my brain started to heal.

As for the medical community and our government, I agree 100%. Well said. History will not look back favorably on how we handled the pandemic. I do expect a lot more fallout from long covid over the years to come. But that could be personal bias.

Take care.

Bsquared | @barbarabell | Mar 8 9:54am

In reply to @stumpedandgrumped "Ah, the joy of specialists. My one rheumo visit was terrible too. I came in, guy..." + (show)

I did read that rheumatologists are notorious gaslighters especially if you are a woman. I hate intellectual laziness as well; these doctors can’t be bothered to familiarize themselves with the literature and latest findings?

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