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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.

Accepting assistance

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.

Accommodation denied!

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.



  • Lisa Marie Basile moderator
    4 weeks ago

    This is really powerful. We often don’t talk about the lack of desire to learn how to use certain assistive devices (when others will say, simply, “But it’ll help!”) — and how these feelings relate to denial. We all have to move through Grief in our own ways, and when we finally admit to needing help, that’s a big step. But it’s a step we have to take on our own time.

    While I am not a wheelchair user, I don’t know what my future looks like. I apprecite your piece looking at the hard topics and admitting to the nuance and depth of what it means to live with AS.

  • Jed Finley moderator author
    4 weeks ago

    Really glad you read this and it connected with you. Admitting we need help is so difficult. After writing this I’ve been trying to take advantage of every opportunity and it’s been great.

    As for your question about Walmart, not really “Receptive” but after I wrote a bunch of emails and Tweets and a few responses I noticed there were a lot more places to sit and rest and more room in the aisles. I did the same with Kohl’s.

  • pam96
    4 months ago

    I tried the motorized scooter thing at our Wal-Mart. It about killed my back so I won’t be doing that again.
    I did get a cussing one time because my husband pulled into handicap parking. I got out and this lady in the car behind us was saying she was going to pull in there. This was before I started using a cane all the time. I was in such a brain fog or something all I could do was look at her. Oh well.

  • Lisa Marie Basile moderator
    4 weeks ago

    Pam, sorry to hear that that happened. Invisible illnesses are so hard for some people to understand, and it can make us feel both very different and yet not validated or like ‘imitators’ all at once! I also don’t use a cane (at least right now I’m not) and sometimes on the subway here in NYC when I need a seat I feel I don’t have the right to ask. It’s complicated. The best we can do is educate others and lead with compassion! (And yet, that shouldn’t be ON us).

  • Jed Finley moderator author
    4 months ago

    It killed your back? How so? Ive been in discussions with Wal-Mart to make a few things more accessible, so Id love to know your thoughts.

    And, I HATE brain fog in those moments. When you need to defend yourself, but you just cant get words or just dont have the energy to fight. Thank you so much for your comment!

  • Lisa Marie Basile moderator
    4 weeks ago

    Jed, that’s AMAZING that you’ve been in talks with them. Are they receptive?

  • pam96
    4 months ago

    It caused my back to hurt worse than it already was. A few days later I had to go back to Wal-Mart and this other customer told me they did the same thing to his back as well.

  • Lawrence "Rick" Phillips moderator
    4 months ago


    I have a disabled license plate which I use occasionally. I always hate doing it, almost like each time I drive I have my own trip on the river denial. I think it is a typical human thing to assume people are looking at us. I mean what would middle school have been without that emotion?

    In truth most people never notice and it is really only we that know what is going on. So someday when I see you at target and you know I parked in a special blue space and you are using a motorized device, lets talk about it, have a good laugh and make up outrageous stories about our fellow shoppers, like look, she kicked a field goal 300 yards and turned down an NFL contract because they paid to little money or sure he was in the army until they found out he could scale a 40′ wall in a single jump. I mean still I bet no one will notice.

  • Jed Finley moderator author
    4 months ago

    Hall of fame comment, Rick!

    I’m glad I’m not alone in thinking everyone is watching. Its hard when your disability lacks visibility.

    And I think that is a wonderful idea. Because there was this guy who can fit 3 pool balls in his mouth, and now he’s shopping for a baking tin.

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