The River Denial
They say denial is not just a river in Egypt.
I have always liked that saying. Not just because it's a wonderful pun, but also it implies that denial is something more.
A Google search of “denial” gives us this fitting definition:
“Failure to acknowledge an unacceptable truth or emotion or to admit it into consciousness, used as a defense mechanism.”
There are so many words in that definition that can be picked apart and expanded upon. “Unacceptable,” “admit,” and what sticks out most to me, “defense”. Because, for many of us with ankylosing spondylitis and other chronic illnesses, we are in denial because we feel the need to defend the life we once had.
The five stages
The Kübler-Ross model (aka. The Five Stages of Grief) was created as a way to help doctors and patients deal with treating or having a terminal illness with the final step being “acceptance”.
But, before one can get to “acceptance”, one must visit the first step of “denial.” Being handed a diagnosis and not “admitting it into consciousness.”
Denial and life with AS
I'm sure many people reading this, whether a patient or caregiver experienced a little denial upon diagnosis. Maybe some were like me and just accepted it for what it is, and moved on with life. (Oh wait...that might be a cloaked form of denial. I'll circle back to that on my own time.)
However, I will fully admit I am steadfast in my denial of other parts of this AS life.
I was once a distance runner, and could navigate New York City on foot better than most. I’d race myself to see how fast I could get from Times Square to Chinatown. I loved my legs and they loved me. Now, I can’t. Walking long distances not only hurts my back but it tires me out for days.
There are accommodations I can get to help me, and with my AS, I am most deserving. However, I just can’t bring myself to use them. My AS peers use the wheelchair service at airports and the motorized carts when grocery shopping. These would both make my life easier, but I don’t use them. I'm in denial. I was once an athlete. How has it come down to this?
The same thing goes for getting an accessible parking placard and simply saying “no” to things I know I shouldn't attempt. I tell myself, “I’m not there yet.” I mean, look at me! I look young and fit. And that brings us to the second form of denial.
I know I am not alone in this, but I have such a fear of people misjudging me for using accommodations. If I ask to use a wheelchair at the airport, will airport staff deny me? What will the people lugging their bags on foot think of me?
I'm really afraid to use the motorized shopping carts for the same reason. First of all, I have no idea how they work. I feel if I were truly needing them, I would know how to make it move. And secondly, I'm afraid that as soon as I sit, employees at the store will swoop down and remove me from the vehicle because I am clearly not worthy. They might even question my need, and that will make me cry because it will force me to face my disability and justify it.
Yes, as I write these words, I know it's ridiculous to feel this way. Airport staff and people won’t care, and store employees don’t swoop and judge. Yet, it still isn't any easier to face my need.
My first accommodation
This past year I received my first accommodation at work. I applied for assistance under the Americans with Disabilities Act (ADA). Always standing while teaching elementary special education was hard for me, especially with such tiny chairs. After my request, Human Resources provided me with a camping stool so I could sit and stand as needed. I felt it put a big target on my back identifying me as “different”, but that feeling faded quickly. I consider it a baby step in the right direction.
Eventually this year, I plan to go out in public to the zoo or a museum and bring my wheelchair. Yes, I will physically need it, but more importantly, I know that if I am going to leave this stage of accommodation denial behind, I’m going to have to go against my fears and just be the new me.
Have you ever been made to feel lazy, even though you live with a chronic condition?