Too often we try to interpret the experiences of others without actually communicating with the very individuals we’re trying to better understand. This leads to false impressions and frequently creates a lack of support. Sylvia Janicki, a young woman with Lyme disease took it upon herself to interview others with the chronic condition and document it. Specifically, she wanted to publicize how individuals with chronic illnesses can sometimes feel “displaced” in the world.
“Without understanding the experience of illness, we cannot design effective healing environments.”
What is displacement?
Displacement can take physical and emotional forms. Physical displacement means physical separation from things, people, places, or care. Emotional displacement is used to describe feelings of separation from such things.
Janicki found many ways that individuals with Lyme disease can experience physical displacement. Chronic conditions can physically isolate patients by confining them to a particular environment which they’ve found most conducive to their health. This inhibits participation in everyday activities and can spark feelings of social isolation (or emotional displacement if you will).
This can also mean not being able to travel. Physical displacement can quickly put people in a daily routine which doesn’t contain a stress-relieving outlet. Janicki calls the places where you are able to socialize outside of the monotony of daily routine “third places”. They are places outside of home and work where you can gain energy by building community, making and sustaining friendships, and seeing family members. It doesn’t have to be “travel” specifically. Unfortunately, even going out to eat or taking a trip to the movies can pose barriers for those living with chronic illnesses.
Stimulating triggers like bright lights, strong scents, or loud noises can be overwhelming for patients. Even when these things aren’t present, outings or travel can cause fatigue or anxiety. What if there aren’t enough places to sit for people who tire quickly? What if the place they chose to spend the night has mold or other allergens? What if there isn’t adequate access to transportation they can physically manage? So many “what ifs” can be extremely stressful and sometimes it’s just easier to stay home.
Emotional displacement may be even less noticeable than physical displacement because patients don’t often vocalize their mental battles. Additionally, since Lyme is an “invisible” illness, the symptoms aren’t always obvious which can cause people to unintentionally invalidate the patient.
Not only can the patient feel dismissed or invalidated by the general population, these sentiments can also occur with people in the medical community. Just try to remember- no one can determine how you feel except for you and your symptoms, your struggles, your joys- they are all true.
Who it effects
Physical and emotional displacement can be experienced by anyone who lives with a condition outside of the norm. It is especially prevalent among those with invisible illnesses or disabilities and it can be amplified when the illness is chronic or lifelong.
What we can do about it
So what can we do about it? Janicki talks about spatial designers- who designs the spaces we live and work in. But in reality, that’s all of us. Our presence and our actions are what make up not only our reality, but the reality of all those we interact with.
That means each and every one of us needs to be more aware of place and the environment we are intentionally or unintentionally creating. We need to –
- Focus on inclusivity
- Understand that what is comfortable for us may not be comfortable for others
- Help to facilitate more institutional support for invisible disabilities
- Expand available livable geography for people with chronic conditions which will support independence, foster participation, and empower individuals
You can read Janicki’s full findings here, and more suggestions on how we can improve experiences for patients with chronic illnesses like lyme.