When we haven’t experienced something, we can only understand it by an interpretation of one who has experienced it. Even then we are all so different, have such different lives, different experiences, and the way we interpret is different. In this, it manipulates how we even understand another’s interpretations. Each individual will face chronic illness very differently, even if they faced the exact same type of chronic illness. We will never fully grasp what happens to another. As a caregiver, the task of understanding someone’s interpretation of chronic illness is crucial to the care that you provide them.
Depending on the interpreter of chronic illness, they will offer their version in great details or potentially offer very little to help with an understanding of what they are experiencing. While some interpreters may feel comfortable sharing, there are others that are going to keep their version more private. Some may decide what is going on or what it really means to have chronic illness is their personal experience, showing little to you and that is ok. Even if you are the caregiver, a specific form of interpretation is not a required. Each person gets their own right to what they share or not share. As a caregiver, it is important to understand no matter what pieces you are given, make sure to work with the pieces they decide to share.
They let you be apart of their health journey that consumes them, yet this is a journey that leaves an unknown to how long it will last. Chronic illness goes through ups and downs and changes over time, but it is something on some level this individual will deal with for their entirety. Through interpretation of what is happening with them, the nuances of a journey with chronic illness will become more apparent to you.
A few ways to better understand someone’s interpretation of chronic illness:
Listen with all your senses.
No matter how much they tell you about their interpretation and experience with chronic illness, listen to their entire story with all your senses. They may show you in body language, the inability to complete things, by certain words they say, they may not be able to be touched, and so much more. They wear chronic illness with the entirety of their body, so look for the signs and all the settle nuances of how they show chronic illness.
Understand that it is their story.
This is their experience, their understanding, and ultimately their whole life. So figure out how to not take away or add to their version. Find a rhythm between you two to make it comfortable for them to share in their own personal way. If they choose to share or not to share their story, know that you are not within their body so they can be the only one to truly state what is going on with them.
Figure out your role with them.
You may have taken on the role as caregiver, but what was your relationship role with them before? Whether you are a friend, a parent, a spouse, or any other role, taking on the caregiver role can sometimes distract from our initial role within their life. Your role as caregiver has probably come more to the forefront but always remembers that you are someone else to them as well. You play a huge role in their life on many levels. There will be times when it will be embarrassingly obvious to them that you are their caregiver in one way or another, but taking care of the intended relationship you have with them is very important!
Be patient with yourself.
It can be extremely hard to see and accept what is actually happening to our people, especially since we don’t know exactly what is going on. Be patient with yourself and the process. It is a learning curve, but find what motivates you to keep learning from this process.
Here are some articles to understand the nuances of chronic illness a little more and the role of a caregiver;
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Image Source: @NuancedLiving