Opinion: Treading Fine Lines by Harriet Carroll [on ME/CFS/LongCovid patient/researcher relationships]

Good thoughtful article from someone who is both scientist and patient.

This bit rang lots of bells, I hope researchers read it:

Quote:

Scientists (and medical professionals)

Whether we like to admit it or not, there is often a level of arrogance in science and medicine. In some cases confidence based on something someone is legitimately expert in is misconstrued as arrogance. But often that confidence spills out in other areas where that person is perhaps less expert in. As an example, I thought I knew enough about vaccine safety during the early stages of the pandemic, but I got vaccine injured and realised I knew surface level stuff only. In short, I was arrogant. Equally the lens through which we understand the world in science/medicine is often quite myopic, and we often fail to even see this. Because of this arrogance, scientists and doctors can sometimes almost demand respect.

So for scientists (and medical professionals) I would say that just because you research (or treat) a disease, it doesn’t mean patients owe you respect. It doesn’t mean you understand things better than patients—the understanding is different, not better or more worthy of respect. If patients praise you for your work, then be grateful for their praise, but don’t let that motivate your work or go to your head, and don’t be offended if they disagree with or critique you (good science, and progress in general, is based on critique, after all). If you are in this just for adoration, please move on. Curious and critical minds are what make great scientists (and medical professionals), not always being right.

In addition, you out of anyone should understand that patients are incredibly ill. We do not always have energy to frame things in a pleasing way, we have a lot of frustrations which we should be able to express without backlash or defensiveness from our (supposed) allies—we are fed up of fighting, and many are neurodivergent so naturally have a different communication style. For the abled scientists/medical professionals, you are the ones with the energy to understand and accommodate this. Make sure you do.

If you fuck up, just put your hands up and say that. Reflect. Clarify your thoughts after the reflection, and move on as a better ally. If you’re in this for the right reasons, you should be open to learning and growing with the community, not telling the community they are wrong but still need to respect you and be grateful for everything you have done (side note: one can be grateful and disagree). You can also help foster healthy disagreement, as it is inevitable that sometimes disagreements will happen and that is perfectly ok.
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Yes, I liked it too, plenty to think about.

And, on the other side, there's commentary about how patients often contribute to creating celebrity scientists or celebrity clinicians. And how that often doesn't end well.

 

There's some other good content on her website too.

People might like to check out the 'Watertight Diet' under the "More" tab on the right of the home page.

 

Good article.

So for scientists (and medical professionals) I would say that just because you research (or treat) a disease, it doesn’t mean patients owe you respect.

Above all else, you do not own our disease and our experience of it. You do not have the understanding let alone the right to tell us what it is like, and what it is supposed to be, and what it means. Medical training and experience do not grant you some grand sweeping view of and insight into the lived experience of a disease or condition, let alone the entire human experience and condition. It does not grant you superior values and moral insight, let alone the right to make such judgements of others.

You are high class technicians, not philosopher-kings. Don't ever forget that.

We almost end up with “demi-gods”.

Do not have heroes, is one of the most important lessons of all in life. Good things are done by flawed people.

 

Awesome post @Sean

 

While trying to understand poetinsf's post, I briefly contemplated @Andy in fluffy pyjamas...