'Reluctant pioneer': A qualitative study of doctors' experiences as patients with long COVID, 2021, Taylor, Chew-Graham et al

Background

The coronavirus disease (COVID‐19) pandemic has had far‐reaching effects upon lives, healthcare systems and society. Some who had an apparently 'mild' COVID‐19 infection continue to suffer from persistent symptoms, including chest pain, breathlessness, fatigue, cognitive impairment, paraesthesia, muscle and joint pains. This has been labelled 'long COVID'. This paper reports the experiences of doctors with long COVID.

Methods
A qualitative study; interviews with doctors experiencing persistent symptoms were conducted by telephone or video call. Interviews were transcribed and analysis conducted using an inductive and thematic approach.

Results
Thirteen doctors participated. The following themes are reported: making sense of symptoms, feeling let down, using medical knowledge and connections, wanting to help and be helped, combining patient and professional identity. Experiencing long COVID can be transformative: many expressed hope that good would come of their experiences. Distress related to feelings of being ‘let down’ and the hard work of trying to access care. Participants highlighted that they felt better able to care for, and empathize with, patients with chronic conditions, particularly where symptoms are unexplained.

Conclusions
The study adds to the literature on the experiences of doctors as patients, in particular where evidence is emerging and the patient has to take the lead in finding solutions to their problems and accessing their own care.

Patient and Public contribution
The study was developed with experts by experience (including co‐authors HA and TAB) who contributed to the protocol and ethics application, and commented on analysis and implications. All participants were given the opportunity to comment on findings.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/hex.13223

https://twitter.com/user/status/1374007576669601793

 

‘It wasn’t an active prejudice, but in the back of my mind I hadn’t thought about it… a number of us on the group have said how ashamed we are of some of the attitudes we’ve had towards people, and lack of empathy… This concept of being irritated by patients when they’re not really pleased when something comes back normal… Hopefully it will make me a better and more empathetic doctor at the end.’ Kate

 

Sorry. I find the whole "Oh, now that it's happened to me, now I get it" BS.

Sure, if some have now learned the error of their ways now they've been through it that's something. If nothing else it should hold up a mirror to.how self absorbed and self centered you've been.

I have no idea what it's like to run a company, or to be a site manager or any of those things. Here's the thing, I don't need to. I go to my customer and I ask them what the problem is and how it is affecting their business.

It is part of my job - not theirs - to bridge the gap in language and concept between what the technology can do and what their business needs and what levels of service their clients in turn expect from them.

I am an engineer. What makes people tick isn't my thing but to do my job effectively I had to be prepared to see things through my client's eyes. The technology may not be able to do what they want but, if I have a good understanding of their requirements, I may be able to find a way to achieve their requirements by using the technology they can afford differently.

If engineers work this way I really don't see how the concept of leaving your own ego at the door and putting yourself in another person's shoes is so alien to doctors.

It's basic customer service folks.

 

I agree. Still important for people to be made aware of it when it happens though.

 

oy

 

Participants expressed fear that certain symptoms would be perceived negatively by their GP, and described selectively disclosing symptoms to avoid symptoms being dismissed or attributed to a potentially stigmatizing condition.

I've done this a lot - tried to explain my symptoms in a way that the GP will find "acceptable". But I'm not a doctor and I don't know exactly what prejudices an individual doctor will have, nor do I know exactly what I've been labelled with (although I can guess a lot), so I usually end up pissing them off whatever I do and whatever I say. I'm not blind, so I see the eye rolls and the eyebrow raises, the total disbelief, the anger.

I was once kicked out of a doctor's room with him shouting at me that there was nothing wrong with me and he almost screamed at me "get out of my office". A few months later, after I started IVF, it turned out that I had six ovarian cysts, some of them endometriomas (i.e. full of blood), and some were very large. When I had them drained by the IVF Clinic they found the contents of most of the cysts to be extremely thick and very difficult to empty, which is indicative of substantial age.

Regarding what I've been labelled with, I delayed buying my medical records for many years because I had anticipated insults and I thought they would depress me utterly, but of the info I was given there was only one insult from when I was a teenager, but I am aware that doctors prune information so there could be a lot more if I had access to the unedited records. What I hadn't anticipated, when I finally bought a copy, was summaries that were so limited in detail that they were utterly useless, I discovered missing information, I found lies, and I found rampant obfuscation.

 

Catherine?

 

Uhhhhh

Nope. Why even say something like this when it's clearly false and in fact much of the discussion contradicts the premise, that far from being pioneer these physicians are walking a path walked by millions and basically calling it all new, a path many of them have likely mocked their own patients for saying the exact same things.

And no discussion of how it invalidates every damn thing that has been said about us, all the weird psychosocial tropes and fabricated nonsense. Including Chew-Graham herself, of course. This is way too self-centered on the physician role. It's never about the patients, even when it's the topic.

 

Ha, I didn't notice that.

 

Might have more to say later but for a start - calling it "The Reluctant Pioneer" just sounds oxymoronic like a form of self-adulating humility. Can it really be 'pioneering' when it comes decades late and about 80% short?

If nothing else it shows this group for what they are. Only people with expertise are to be listened to. Meh.

Waiting on an apology. But LC is all they see. And doctors get it. So that makes it legit then.

Agree with @rvallee It really does sound like it's all about them. Look what they did!

I suppose they will always dislike us. We with ME (for the most part) had no expertise and had the audacity to say they were wrong. And when they did not listen there was mutual uh, discontent. They will never get past seeing themselves as the victim even as they move on without us and proclaim 'pioneer' with their new BFF's in LC.

 

Tweet from Amy Small sharing Anil van der Zee's tweet on this study:

- It's not that I never believed in ME/CFS it's just that I didn't have the empathy for it that I do now. I'll hold my hands up & say that I get it now and l'm so sorry I didn't then. #MedTwitter read this. If you can't understand your pts you might understand your colleagues

 

Some more quotes:

"I was also getting really tachycardic on any exertion. And I didn’t want to admit it because I think I was worried about it being dismissed as anxiety" - Jenna

"I wondered if I could have some basic bloods. She said “there’s nothing we can do, this is all post-viral and you need to just wait and rest”. I felt dismissed, I felt unheard, I felt angry, quite tearful at the time… There was no kindness in her voice. It was almost tick-box, another COVID call, another COVID anxiety call. And she hung up on me, she said ‘that’s all I can do for you today, goodbye.’" - Farhad

"‘I had COVID and five months later, I’m still not better. In fact, things are still really quite difficult for me. I can’t look after my children for long periods of time, or in the initial stages at all, and that created huge problems. I’m just suffering a lot and I know that, from looking online, there are thousands of people who are similar out there. Up until very recently really, a lot of us haven’t had our voices heard" - Alice

 

I'm probably going to upset people by saying this & that's not my intention but......

On the one hand, one of the best pieces of advice you could give an ME patient in the early days is to rest up. Enjoy doing what they can when they feel able but be watchful for patterns - like the 3 day PEM window. On the other, that's very hard to hear.

There is a glaring absence of support for people who find themselves in this situation. No help to reorganize their finances, to help advocate with the employer, access benefits etc.

So the doctor is saying one thing but everyone else is pushing you to do the opposite.

Naturally, you then suspect your doctor isn't giving you the treatment you need/should have. Your doctor is leaving you in a nightmarish limbo.

How much of this is down to the doctor and how much of it is down to the gaping gaps in our social support systems?