Visualizing one’s “pain” with 22 pain cards Initiatives to deepen mutual understanding by sharing with others

At “Brain World 2024 for Everyone – Super Diverse,” visitors will be exposed to cutting-edge research results from various companies, universities, and research institutions working to realize a neuro-diverse society. Dr. Mioshin (▲Picture 1▲), an anesthesiologist, TikToker & YouTuber, and graduate student at Digital Hollywood University, is working to visualize personal pain experiences and share them with others to deepen mutual understanding. The “Pepepe Pain Card Experience” is an opportunity to see “invisible pain! At the booth titled “Pepepe Pain Card Experience,” a workshop was held for children to express their own pain by selecting cute illustration cards such as “throbbing” and “prickling” while recalling their own “painful” experiences. Nanako Ishido (▲Picture 10▲), Director of B Lab, which promotes the “Brain World for Everyone” exhibition, spoke with us about the contents of the exhibit and the latest research findings.

Anesthesiologist TikToker & YouTuber / Digital Hollywood University Graduate School
Mr. Mio Shin

> Interview videos are also available!

Workshop to visualize invisible “pain” with 22 pain cards

Ishido: “This is the first time you are exhibiting at “Brain World for Everyone”, Mio Shin-san. Could you tell us about your exhibit and your latest efforts and research results?”

Mr. Mioshin: “I am usually a freelance anesthesiologist, researching the visualization of pain. This time, at “Brain World for Everyone,” we exhibited a booth called “Let’s Visualize Pain Together. We had an experience of visualizing everyone’s past pain using cute cards. Let me explain the content of the workshop. First, we asked everyone to write down their names and then asked them to recall “What was the most painful thing in your life? We saw a lot of diversity, with some people recalling in an instant and others recalling after thinking, ‘What was it?
　After they recalled the pain, we asked them to fill in the “Body and Mind Sheet,” indicating the part of the body that was in pain (▲Picture 2▲). (▲Picture 2▲)

Then they were asked to choose a type of pain from 22 pain cards and express what kind of pain it was with a numerical value: 0 is no pain at all, 1 is so-so pain, pretty painful, I’ll cry, I’ll die, and so on.

When everyone’s pain came back to them, we asked them, “When you were in pain, what did you want the people around you to do?” and then we gave them time to talk to their own hearts and minds. The pain map is shown on the back of the sheet. Yellow cards are more common for skin pain, pink cards for internal organ pain, chattering cards for nerve pain, and orange cards for stiff shoulder pain. I also told them that even if the same card is selected, the location and cause of the pain can be different, and that too much emotional pain can cause the brain to issue the stimulus of pain, which leads to physical pain” (▲Picture 3▲).

Ishido: “Small children tend to say “ouch” whenever they feel something out of the ordinary. In other words, their “pain resolution” is not so high, and they say “ouch” even if they have a slight problem. I thought the “Pain Cards” were very interesting to help them understand that there are various types of “ouch.

Also, the types of pain are expressed by onomatopoeia. Different people express “pain” in different ways, but is “prickling” pain mainly in the skin and mucous membranes the same for children?

Mr. Mioshin: “In fact, people tended to remember visceral pain, headache, gastrointestinal pain, and pain caused by trauma such as when they fell and injured themselves more strongly than pain in the skin and mucous membranes, and fewer people chose sensory sensitivity-type pain. However, I would say that they were generally ‘right’ or the same.

Here is how the actual workshop proceeded. If you came to the booth with a group of friends, we worked together and staff gave advice to each of you, but if you came to the booth alone, we worked one-on-one with staff. We were very grateful that everyone took the workshop more seriously and found it more interesting than expected.

Here are some examples. First, an elementary school boy who wrote “I had a headache” was extremely energetic and picked more and more cards. However, the number of pain was surprisingly low, 2. When we asked him what he wanted me to do when he had pain, he said, “I wanted you to squeeze me. The girl, who was probably in upper elementary or junior high school, enjoyed doing the work while doodling. She commented that she was constipated and had chronic pain and did not want anything done about it. I think the reason I wrote ‘I’m going to go to dinner’ was to distract her. (▲Photo 4▲)

In the intense pain card, some of them picked a lot of cards, digging up old memories of being hit in the head with a ‘gunshot’. They were in so much pain that their memories were blown away and they thought, ‘Hurry up and take me to the hospital. Furthermore, most of the mothers wrote about the pain of childbirth. Immediately after the C-section, the anesthesia was working and the joy of the baby’s birth made her forget the pain and fear, but after she calmed down, she began to feel the pain of the wound and wrote, ‘I wanted painkillers. A natural birthing woman wrote to her husband by her side, ‘I wish you had called out to me,’ and in one scene, she directly expressed her gratitude to her husband who was standing next to her, saying, ‘Thank you for touching my back and body and encouraging me. When a baby is born, it really hurts, so the expression ‘zudon’ is used. The trauma to the eyes also feels like ‘thud’ or ‘zudon,’ and this expression is often used for trauma-related matters. (Photo 5)

Several people from other countries also participated. A Chinese graduate student girl filled in that her heart ached when she had a fight with a friend and said that she felt both the desire to be ‘left alone’ and to be ‘hugged’ with a heart break marker. Another Chinese felt that she ‘wanted to be rubbed’ and ‘wanted to be comforted’ because her diaphragm hurt when she was nervous.

Others from other countries shared their stories of having a stroke in their 30s and being ‘scared that it was no longer their body. He chose a value of 4. He was taken to the hospital immediately and is now living without any aftereffects. She said that she felt that she should be left alone, and that she should be reassured by a clear explanation of what had happened to her body.

I got the impression that many people described headaches as a disease that causes pain; more than 10 people described headaches. Most of them had chronic pain (migraine), not sudden onset, and they wanted to be ‘left alone’ when they were in pain, but they also wrote that they wanted to be ‘watched over gently. (▲Photo 6▲)

My friend’s parents and their children also came. After the child first expressed about his pain, the father asked, ‘Do you understand my pain?’ he asked the child. The child talked about things like ‘I don’t let him have too much beer,’ so I think he was probably talking about his hangover.”

Ishido: “It is good that writing about pain can start a dialogue among friends and between parents and children, and can be an opportunity for them to understand each other. There may be more cases in the future where parents and children try it together.”

Mr. Mioshin: “It was only after the workshop that I felt that this kind of usage was possible, and it was also a learning experience for me. Some parents and children actually did it, and some of them even bought them, saying, ‘This is so good, I’m going to buy it.

It does not make sense to spread the pain card only to patients.
It is important for healthcare providers to understand patients’ pain and improve the quality of care

Mr. Mioshin: “As feedback after the completion of the two-day workshop, the first thing I would like to say is that ‘you don’t have to be a physician guide to work with this system,’ as we were able to implement it with our staff even when I had to leave the workshop in the middle of the day. From children who have just learned to write to the elderly, if you explain the intention, they can use it, and for foreigners, by adding an English message, they can understand it.

What was a little more difficult to deal with was when the parent-child relationship became visible. If the family seemed strict, the child was reserved, chose the cards, and seemed nervous. It was a new insight for me, but I felt that it would be better to have the parent and child completely separate and concentrate on the work alone.

In addition, some people, especially children, spontaneously began to imagine the other person’s pain, and others said that it gave them an opportunity to confront their memories and their hearts. Among those who shared their impressions with us were some who said, ‘It was very refreshing to be able to talk about it,’ and others who said, ‘It becomes painful when you are asked to remember the pain.

I thought that ‘I want you to say kind words to me’ would be the most common response, but there were many who said ‘I want you to leave me alone,’ and some wanted skinship.

I have not had the opportunity to talk to patients with “hypersensitivity” as their main complaint, as I usually see only patients with severe pain all over the body, but this workshop was good for me to adjust and match my “bumps and bruises”.
　Let me tell you about my outlook for the future. I have had painful fibromyalgia for 20 years. The reason why I started this initiative was because people around me did not understand my pain. When I pursued the cause of the pain, I found out that it was caused by myofascia, and now I am feeling very well. I believe that it is important for healthcare providers to understand patients’ pain even before performing examinations to improve the quality of medical care.

The challenge, however, is that we have had several doctors use the system, and it is difficult to find the time to have them choose from 22 pain cards in the outpatient setting. In the future, we are considering developing cards that can be used smoothly and creating a medical questionnaire type that can be selected during the waiting time.

We are also trying to find a good way to work together with not only clinicians, but first of all with those who are in a position to educate clinicians.

We believe that a good match would be a doctor in the primary care field with a general practice, or a palliative care doctor for chronic pain from cancer. We also feel that physical therapists, Oriental medicine acupuncturists, pharmacists, and nurses would be interested.
　Pain cards tend to be yellow for pain in the skin and mucous membranes (▲Picture 7▲) and orange for pain in internal organs such as muscles and fascia (▲Picture 8▲). Pink card pain is in areas of severe pain such as the uterus and gastrointestinal tract (▲Picture 9▲).

(▲Picture 8, pain in internal organs such as muscles and fascia is often represented by an orange card ▲)Illustration Dr. Pepe

We hope that these words will expand your imagination, dissect you, and in the future, when you are able to make an application and understand that ‘my pain is like this,’ communication will be faster and deeper. Through this workshop, I hope to send the message that if ‘pain’ can be communicated, it can be cured.”

Describe the type of pain as well as the intensity of the pain
Begin efforts to promote understanding of those around them

Ishido: “When I was first shown the Pain Cards, I thought that the purpose was to “share different types of pain” by increasing the resolution of pain and visualizing it, in response to the fact that pain is uniformly described as “pain” even though there are various types of pain. Of course, that is the purpose of the Pain Cards, but I felt that they were also expected to have therapeutic effects, such as helping people face themselves and deepen their understanding of themselves through the Pain Cards. For example, it may be easier to spend time at home if family members have a better understanding of the pain by visualizing it. Also, if these Pain Cards could be shared at work or school, people who are always suffering from pain might be able to understand. I have found that the Pain Cards are very effective as a tool for such understanding of oneself and for helping others understand.
　My question is, of the four types of pain, only one of them is ’emotional pain’, not physical pain. I think physical pain and mental pain are different in kind, but is it possible that the reason they were put together is because the body and the mind are inseparable?”

Mioshin: “I have not studied psychiatry professionally, but when I explored the literature, I learned that efforts to visualize pain had been around since the 1970s. [1][2] Even there, four types of mental injuries were selected. The reason why four types of wounds were chosen for my workshop was based on this past research. It is meaningless to make 22 cards based only on one’s own feeling. The professors at Osaka University had translated the past research, which was originally in English, into Japanese, and I developed the illustrations and onomatopoeia based on that material.”[3]

Ishido: “When I learned that some of the subjects this time were from overseas, I also wondered how you translated the pain into English, but I see that you originally translated the overseas version into Japanese.

Mr. Mioshin: “The research was conducted overseas up to the point where the initial 200 or so types were carefully selected into 22 types for clinical use. [1][2] Osaka University [3] was conducting research on the validity of these in Japan, and we began creating pain cards based on that research.

(Ref: McGill Pain Questionnaire, which was devised in 1975 https://www.jspc.gr.jp/igakusei/igakusei_hyouka.html)

Ishido: “What was the background and process behind the McGill Pain Questionnaire?

Mr. Mioshin: “I heard that they have made 70 types of words out of about 200, whether this pain is nervous system pain, sensory pain, or mental pain, and then carefully selected and categorized those 70 types into 22 types, and selected the representative ones.
　However, I feel that they are not actively used in Japanese pain clinic medical institutions. On the other hand, scales[4] to measure the intensity of pain are widespread throughout Japan. It expresses ‘how painful or hard is it today’ as a numerical value such as 5, 10, 100, etc., with 0 being no pain at all.” https://www.jspc.gr.jp/igakusei/igakusei_hyouka.html

Ishido: “That alone can only express the intensity of pain, so you took on the challenge of trying to express the types of pain as well.

Mr. Mioshin: “Yes. The fibromyalgia I suffer from causes pain throughout my body, so even a series of actions such as changing clothes, walking, moving, waiting, and then walking again, moving, and returning home increases my pain, so visiting a medical facility itself becomes a burden. In addition, if there is no abnormality in the examination and the pain does not improve even after intravenous drips and injections, doctors are not very good at treating the pain. So I thought, “There is a reason for this pain, and people need to understand that it is happening.

Ishido: “Everyone feels it on a daily basis that it is difficult to understand what hurts when someone says ‘it just hurts. I think in many cases, even if you are not a doctor, you feel it even when, for example, a child in the family complains of ‘pain. I understand that the McGill Pain Questionnaire was not widely used, but were there any challengers like you, Mr. Mioshin?

Mr. Mioshin: “I looked into it, but apparently there were none. I figured I had to do it myself.”

I want to collaborate with researchers in various fields within the framework of neurodiversity.

Ishido: “For example, the “tactile force” (the power of the sense of touch), like eyesight, is different for everyone, and by measuring its strength, KMD is conducting research to let people know, for example, why it is painful to wear a mask or why it is painful to wear clothes. It is often said that the sensation of “pain” is very difficult to understand. In reality, the word that most people use is “pain,” so I think that if it becomes easier to tell people what exactly “pain” means, they will be able to understand how painful they are. By the way, in the “Brain World for Everyone” exhibit, there are four major types of ‘pain’; which was the most common?

Mio Shin: “Nociceptive pain, which is pain that communicates danger to the body, was by far the most common. I think this is partly because the age of the people who experienced it was young. Perhaps as they get older, they will talk about sciatica and hernias, and the types of pain will change. Pain to the physical body, such as childbirth, was overwhelming for this year’s group of visitors. There were some who complained of emotional pain, but I don’t think the percentage was as high as 20%.”

Ishido: “It depends on where the workshop is held. The fact that the workshop was held in the midst of a fun and lively event may have had an impact. If it was in a quiet space, I think some people would cite emotional pain as the toughest pain they have ever felt. I guess it depends on what kind of environment you do it in.”

Mr. Mioshin: “I think you are right. In order to have a proper discussion about pain, I think a certain degree of psychological safety is required, and a quiet environment is necessary.”

Ishido: “Any final message?”

Mr. Mioshin: “It was 2018 when I was diagnosed with fibromyalgia for my own illness. It took me 20 years to get there. However, I started my current initiative partly because people didn’t believe me when I was diagnosed. Until now, I had no peers around me who were doing similar research, but by exhibiting at “Brain World for Everyone” and learning about the neurodiversity framework, I was really surprised to see how many peers I had. I believe that some researchers, including myself until now, have felt that they are ‘fighting a battle against loneliness. Through this exhibit, I learned that it is easier to find friends when you broaden your horizons, and that you can also apply ideas from other research fields to your own research. I look forward to working together with you. Thank you very much for your time today.”

Ishido: “Researchers from a variety of fields are participating in “Brain World for Everyone. I think that if we look at this research within the framework of neurodiversity, we will be able to see new directions of research, such as how it can be used in this way and how it can be useful in society. One exhibitor said, “It was like a treasure chest of ideas. I hope that exhibitors will stimulate each other and create new chemical reactions.

Mr. Mioshin: “Until now, people tended to think that illness and pain were a matter of personal experience and that it was ‘my own fault for being weak. But since “Everybody’s Brain World” showed the importance of environmental adjustments, I think many people now know the importance of such adjustments.”

Ishido: “This is exactly what we are focusing on: environmental adjustments. We look forward to working with you in the future. Thank you very much.”

works cited

[1] Ronald Melzack: “The McGill Pain Questionnaire:major properties and scoring methods” The Clinical Journal of Pain (1975), vol. 1, no. 3, pp. 277-299 .

[2] Melzack, R.: “The Short-Form McGill Pain Questionnaire,” Pain (1987), vol. 30, no. 2, pp. 191-197.

[3] Tomoyuki Maruo, Fumi Nakae, et al.: “Creation of the Japanese version of the Short-Form McGill Pain Questionnaire 2 (SF-MPQ-2) and examination of its reliability and validity,” The Japan Pain Society PAIN RESEARCH (2013), Vol. 28, No. 1, pp. 43-53.

[4] The Japan Pain Clinic Society : Basic Knowledge of Pain https://www.jspc.gr.jp/igakusei/igakusei_hyouka.html

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