When you can't find the words: Using body mapping to communicate patients' experiences of Long Covid 2024 Jokela-Pansini et al

If people find this useful to process the trauma they have gone through with their LC diagnosis, good for them.

It is quite common to do these type of activities in mental health workshops. I think often being in a group and sharing feelings and thoughts, is as useful as this type of therapeutic activity, but it is a process and different things work for different people.

There does seem to be an element of somatic therapy to this as it comes from the chronic pain treatment space (I read the article, not the paper), so this could have some negative repercussions, rather than just a body map solely being a path of communication of multiple symptoms.

It would not work for me, because I would have to get on the floor and have a carer do the outline, a lot of energy for little gain with possibly some pain - so perhaps they could do it on a hand drawn A4 outline? As for getting to a workshop - that would not be possible as I am housebound.

I prefer words to drawings, although both can be easily misinterpreted by others. But talking to a diagram/bodymap in a GP surgery is not my idea of a good consult, when I would rather look my GP in the eye and monitor her response to my questions and discussion of symptoms.

I think if I showed a body map to some of my gaslighting family this would further reinforce their negative beliefs but I guess a therapist needs to be with the person to present their body map to their family/friends. I can see the utility for it as a means of communication, especially by different ethnic groups and a means to establish rapport and understanding.

 

I've had problems with a painful left kidney for decades. I know what caused it.

In order to speed up any explanations of the extent of the problem from me, I have, prior to any face-to-face appointments, asked my husband to poke me in and around my kidney and when I tell him that he's found a spot that hurts he draws a small circle or an x on my skin. I ended up with a cluster of marks which I could show to a doctor who probably wasn't going to examine me because GPs no longer touch their patients if they can avoid it. At least it gives doctors more info than I can get across in words.

I suspect that people might find this funny, but I'm not good at communicating with doctors.

 

This may be a little bit helpful, it's not a complete waste of time. We need to get better at psychologically supporting people with post-infectious syndromes, by affirming their illness and helping them cope (as opposed to buying into the delusion that you can think yourself better).

 

Oh it's probably useful for a lot of people as a way of communicating. There is a huge variation in the ways people can communicate concepts, some far more visual than others. The problem is that most physicians would physically recoil at a patient who brings something like this, and it would never be used for its intended purpose. About as much as a long list of symptoms, which is very useful to us patients, but immediately flags us as psychosomatic to about 90% of MDs.

We're not the problem here, but it's a problem with no solution because the problem is in charge of the solution, and wants nothing to do with solving this.

 

Before drawing a diagram such as the one about biting back, I, for one, would have to go through a thorough verbal process to decide what the symptoms are and the effect they have. I would need to think in great detail to be able to come up with the symbolic concept of repeatedly threatening dinosaurs.

I can't see my GP being impressed if I turned up to a 10 minute consultation with drawings to be deciphered in order to get to the very words used to produce them in the first place.

 

For the patient, in a therapeutic context body mapping might well bring some benefits. But you'd also need highly trained facilitators to deal with the trauma of having the condition & being neglected.

But it's aims of being a new way to get drs to believe you and take you seriously is likely quite a stretch. As some people have said, this would likely alert some warning bells for most drs if people took in a life size sheet of themselves or social services referrals if you did it for a CYP.

I would never take something in like this to a HCP.

The other issue is accessibility. To be able to get to a workshop, participate, get on the floor, draw with head down one likely is pretty mild and doesn't have orthostatic intolerance. Everyone deserves a chance to process what has happened for them, but it excludes the severe and isn't accessible. So again we have the problem of only a mild representation of the illness being given to society.

Good intentions but we all know the saying of where that can lead.

The danger is that emotions get mixed up in the interpretation of the image, and that's the problem a Dr still has to interpret the images which could lead anywhere and is a subjective process. It personalising there is a subjectivication which is risky for such a condition that is commonly misinterpreted.

Chew Graham has a cheek on being quoted for this with her history. But why she was ever allowed to be an advisor for Long Covid Support (as well as Tim 'FND' Nicholson) shows maybe they don't quite have the discrimination needed.