Awareness and education
Patients in developed countries wait for the diagnosis 5-9 years and are often dismissed. Participants in my research told me that “I was labeled a hypochondriac”; “They [doctors] all told me it was all in my head”. After downloading VEA it provides a simple test (questions) that helps to check what is the likeliness of endometriosis and suggests further steps. After diagnosis, it can guide the user through educational information since now quite often no explanation is provided: “I was given a yellow post-it note that I had endometriosis and the rest I had to google”. We empower patients to get education and support they need in a way that does not require a lot of time or effort.
My best possible quality of life
Given that endometriosis can affect patients in different ways it is important to remember that VEA’s goal is to focus on the best possible quality of life for a particular person. This means that for some it might be running 10K race and for some having some pain-free days in a month. This service allows women to be themselves and prioritize what is important for them. Right to choose our goals and decide how to reach them is a true empowerment.
Rethinking patient’s role
VEA allows women living with endometriosis to take an active part in their recovery process and make informed decisions based on data collected with the input device. By giving patients tools we empower them to be part of decision-making, and reach for things they didn’t know might be possible.
Power of community and story-sharing
I’ve discovered that patients see a lack of understanding as one of the biggest challenges coming with living with endometriosis: “The difficult part was explaining it to my parents […] they have this approach that you are too young to be sick”. Especially in the early days after diagnosis, but also later when life comes into way of self-care, it is important to have a group of people who will understand patients problems. Since most patients don’t know anybody with the same condition in their social circles it is important to be able to turn to others at different stages of their personal journey and seek advice as well as see role models. As many participants in my research told me, stories of other women are a powerful tool helping to imagine what the future might bring and what the patient needs to prepare for. Being part of a community brings motivation to introduce changes, keep up with self-care routines as well as aspire to goals that seemed unattainable before.
Independence and accessibility of the services
It is also important not to overlook that VEA can deliver consultations with the nutritionist, pelvic floor therapist, physical therapist and others to remote places like North of Sweden and to patients who could not afford to travel or take individual classes (in case of Habit Nooks that provide video instructions for example for stretching exercises).