Having a chronic illness has undoubtedly influenced who I am and how I see the world. But now I wonder how my daughter will view my chronic illness and how she will see people who have chronic illnesses and disabilities.
Since our daughter has come into our lives, I have taken a lot of time to think about how I would like to grow. And yet, as an individual with a chronic illness, my family and I continue to face obstacles, barriers, and misunderstandings of what our lives are like.
We need to make space for people with chronic illness to fully participate in society. By fully participate, we need to challenge how we think about time, commitment, and productivity. Living with a chronic illness challenges these concepts.
If I compare myself to healthy person...
A healthy person wakes up and their battery is at 100%.
When I wake up in the morning my battery is 50%. My battery does not have the capacity to reach 100%.
The healthy person and I go through the same day. We wake up, walk our dog, have breakfast, go to work... All of these activities expel energy and deplete our battery as we go through the day.
By the end of the day my battery will likely be 0%.
Because my body does not absorb nutrients the same as a healthy person. I don't retain fluids the same as a healthy person and I expel a lot! I could be at 0% or even less while the healthy person could at 50%. When we go to bed the healthy person's battery will recharge and mine will not because fatigue is a complex issue when mixed with a chronic illness. Balance and pace are critical to me maintaining my charged battery. I am still learning this delicate balance to maintain my charge!
And still, I am a mother, a professional, an advocate while living with a chronic illness. The only difference is our bodies processes are different.
I will continue to challenge how we think about time, commitment, and productivity. I am extremely efficient because I don't have the same time as others and may not be able to produce as much but that does not mean I am not committed to the task. Isn't the saying "Quality over quantity" anyway?
We need to create space for people with chronic illness by appreciating and valuing their ways of being.
Woman with DIGITS