The Body in Pain

Digital Patient Portraitures Visualizing Health and Medical Data

A person in love “has Shakespeare or Keats to speak her mind for her. But let a sufferer try to describe pain to a doctor, and language at once runs dry.”

– Virginia Woolf

No test can measure pain. It does not appear on a CT, MRI, or PET scan. Yet, physicians must obtain a clear history and understanding of their patients’ pain to provide quality care, even when words are inadequate. Despite the importance of treatment compliance and chronic disease self-management, patients often feel unheard or unbelieved when sharing their symptoms, and the consequences can be catastrophic.

Using an iPad app created by Virgil Wong and Katie McCurdy through their company Medical Avatar LLC, patients track and communicate their symptoms over time. Wong meets with participants on a regular basis, observes their use of the app, and makes drawings of them. Patients recorded data on the daily occurrence of each symptom, its severity, and how the visuals may have influenced conversations with their doctors.

Portraits are exhibited in clinical spaces to foster further conversations. A woman with Fibromyalgia reported that her portrait helped her realize that meditation and exercise, while painful at times, helped to relieve her symptoms, let her sleep better, and improve her mood. A girl with Bell’s Palsy stated, “My face would freeze up, but by the time I got to see a doctor, it would get better. Tracking my symptoms helped me show him that I wasn’t making everything up.” Two cases in a recent series revealed misdiagnoses, which the doctors attributed to “not having all the facts on-hand – until we saw the visual symptom tracking.”

This work was featured in The Roanoke Times: Blacksburg native seeks to understand pain, healing through art

Other press coverage includes:

Epilepsy

Gender:	Male
Age:	54
Ethnicity:	Hispanic
Primary Symptoms:	Seizure Soreness Jaw Pain Headache Depression

Patient recognized that patterns of seizures coincided with times of stress and anxiety. He began a daily meditation and yoga practice, which reduced the intensity and frequency of seizures. While visual symptom tracking did not help with the diagnosis, it did identify signs of depression as a comorbidity, which influenced the physician’s decision on selecting an antiepileptic medication.

Fibromyalgia

Gender:	Female
Age:	42
Ethnicity:	Caucasian
Primary Symptoms:	Muscle Pain Headache Fatigue Jaw Pain Tender Points

Patient had multiple clinical visits involving procedures for hyperthyroidism and lyme disease before using visual symptom tracking and being accurately diagnosed with fibromyalgia. Physician indicated that the visual mapping of tender points and widespread pain facilitated the diagnosis. Also, by mapping symptoms, patient was able to determine the best combination of medication, physical therapy, and exercise to minimize pain, ease fatigue, sleep better, and improve her mood. She had avoided exercise due to deep muscle pain and stiffness, but her symptom mapping reminded her that she always felt better after aerobic or conditioning exercise.

Nonallergic Rhinitis

Gender:	Male
Age:	48
Ethnicity:	Caucasian
Primary Symptoms:	Sinus Pressure Runny Nose Nose Bleed Headache Ear Pain

Multiple clinical visits resulted in misdiagnoses for cold, flu, upper respiratory infection, allergies, and sinusitis. Physician credited the precise reporting of symptoms and changes in symptoms seen in the app for facilitating the accurate diagnosis of nonallergic rhinitis during the most recent clinical encounter.

Cardiovascular Disease

Gender:	Male
Age:	67
Ethnicity:	Black
Primary Symptoms:	Angina Lightheaded Shortness of Breath Headache Wrist numbness

Patient was diagnosed with angina and ASHD before the case study. To prevent future visits to the emergency room, the patient began tracking his symptoms and their changing levels of severity as he modified his health behaviors (nutrition, exercise, sleep, stress management) and began medication and other treatments. “It takes time to see things work,” he stated. “The app helped me see that I was on the right track to getting better.”

Bell’s Palsy

Gender:	Female
Age:	51
Ethnicity:	Caucasian
Primary Symptoms:	Droopiness of left-side of face Inflammation Ear Pain Tearing Drooling

Patient stated, “My face would freeze up, but by the time I got to see a doctor, it would get better. Tracking my symptoms helped me show him that I wasn’t making everything up.” Patient was originally misdiagnosed with otitis media/ mastoiditis until photos and the combination of symptoms suggested Bell’s Palsy. Patient also assessed treatment efficacy using the visual symptom tracking app.

Asthma

Gender:	Male
Age:	48
Ethnicity:	Caucasian
Primary Symptoms:	Fatigue Coughing Blue Lips Chest Pressure Wheezing

Visual symptom tracking aided the patient in identifying how aspirin and his hypertension medication were worsening his asthma symptoms (weeks 11 – 13). Symptoms also increased in week 24 during a period of particularly high emotional anxiety and stress.

Type II Diabetes

Gender:	Male
Age:	34
Ethnicity:	Caucasian
Primary Symptoms:	Fatigue Headache Blurry Vision Excessive Thirst Sores

Patient did not receive a blood glucose test until multiple visits to his primary care physician where he received care focused on his fatigue and headache. Patient believes that diagnosis would have been expedited had he more time to explain to his doctor all of his various symptoms.

Trigeminal Neuralgia

Gender:	Female
Age:	55
Ethnicity:	Caucasian
Primary Symptoms:	Stabbing Pain Sharp Pain Electric Pain Burning Throbbing

Patient could not communicate the differences between “stabbing,” “sharp”, “electric”, and “burning” pain until using the visual symptom tracker. She stated that “the colors and lightning shapes really help to communicate how painful and differently painful my symptoms are.” Patient credits the mapping of pain frequency on the face, duration markers, and record of triggers (“The pain would strike when I was brushing my teeth!”) to her successful diagnosis.

Non-Hodgkin’s Lymphoma

Gender:	Male
Age:	69
Ethnicity:	Caucasian
Primary Symptoms:	Nausea Blurry Vision Eye Pain Dizziness Chills

Patient was diagnosed and treated for an orbital tumor from Non-Hodgkin’s Lymphoma prior to tracking his symptoms. However, he believes that he would have been diagnosed sooner had he shown his physician a full map of his symptoms at his earlier annual check-up. Originally, he did not report his vision problems to his primary care physician, because he thought they were already being addressed by his ophthalmologist.