How To Improve the Lives and Perception of Spondyloarthritis and Chronic Rheumatic Disease Patients
Lynn Formesyn is a Spondyloarthritis (chronic rheumatic disease) patient, writer and human rights activist. She supports and promotes the rights of people with disabilities and chronic patients through GRIP, a human rights organization of and for people with disabilities. In this interview, we dive into her personal experience and views, which she has also shared in her book Zinvol Ziek (literally translated: meaningfully sick).
What is Spondyloarthritis?
Spondyloarthritis (also known as Spondyloarthropathy or Spondylitis, in short SpA) is a chronic rheumatic disease. It is an umbrella term for inflammatory diseases that can affect the back, pelvis, neck and some larger joints, as well as internal organs, like the intestines and eyes.
What happens is that your own body defenses attack the spinal cord like if it was an invader. It is incurable and we can only slow it down by injecting biological immunosuppressants to block the part that attacks the body. The problem is that also a healthy part of the immune system is suppressed, which means that we are more at risk of infections (like COVID).
What’s the current situation of Spondyloarthritis and its patients in Belgium like? Where is it heading? What would you like to see happening for them in the future?
There’s a lot of stigma attached to patients. We are seen as people who are inactive and don’t participate actively in society (even that we don’t want to be active again); who cost a lot and put pressure on social security.
This is plain wrong.
Research shows that a huge majority of chronic patients want to participate, but jobs and work culture are not adapted to people with chronic conditions because of the chaos that illness brings to their schedules. For example, I only know If I can work in the morning when I wake up. There are also problems with current regulations. Health and work are intertwined, so where is the freedom to create jobs that ‘work’ for us?
As an activist I try to make people rethink how they see people with chronic conditions, and to make changes that provide more chances and ways to be more active in society.
Which changes would you like to see happening?
I would like to live in a society where your job does not define if you are able to survive, where people with disabilities get to create and do fulfilling jobs, where they have time to connect with other people outside of work, with caregiving neighborhoods where people know each other and help each other more. We need more room, time and space for connection and less pressure for money, less stress.
Basic income may be a solution but I’m not sure yet. This is a topic that I’ve started to explore but don’t fully understand its implications yet.
I also think that the government should trust patients more and stop asking us to prove that we are ill over and over again.
What’s your book about?
Zinvol ziek is a very personal book that touches on all things that get contaminated by chronic disease (work, life, relationships, self-image, …). It also reflects on society as a whole to understand which place people with chronic illnesses can take in society and how they are viewed. I’ve talked to specialists and politicians (all conversations are available for free as podcast) to understand their views and get insights in what they are willing to change.
What advice would you give the participants of Hack Healthcare to provide solutions for Spondyloarthritis patients?
Talk to us! Don’t talk about us, don’t fill in for us. We are the experts on living a life with chronic problems. Integrate us in all steps, from the beginning, from the concept phase. We can help you validate your ideas and products. You just have to be willing to validate our expertise. Help us participate more, it will work better for everyone. If you don’t talk to us, how do you know your solution will be helpful?
What brings you to Hack Healthcare?
I’m interested in Hack Healthcare because it has patient panels that give us a chance to talk about the patient journey with people who might really use it to do good in the future. With my experience and all the research I’ve done I can go beyond my own story and represent a larger group of people. Too many chronic illness patients are silenced and their voices are not heard. Being more open and getting the chance to participate also makes me more willing to take part in the event.
Which Hack Healthcare themes and challenges interest you the most and why?
I’m curious about alternative financing models. A lot of people I interviewed for my book talked about things like changing the pay for service business model and turning the income of healthcare practitioners into a monthly paycheck (which is already being done in some cases in Belgium). But there seem to be a lot of interested parties that are resistant about alternative financing models.
Personal prevention is interesting, although people should not be held individually responsible. Patients should not be blamed for their health, stop the victim blaming. The current system is not made for healthy eating choices when you are living on a meagre disability pension. You get less access to a lot of things when you have a disability, you have less choice and agency.
It would be great to have a platform where all the data of a patient could be coordinated and made available to doctors. As chronic patients we have to see a lot of doctors in different institutions and currently there’s no way for them to easily access our data and to communicate with each other, so we lose a lot of time and energy answering the same questions again and again, and we are exposed to a higher risk of having an important element overlooked.
What would you like to see coming out of Hack Healthcare?
I would like to be a few steps closer to an integrated healthcare system, preferably available and close to where people live.