PRETTY LADY CHRONICLES: Invisible Disability Chronicle #1,000,001
For starters, being approached, harassed, and discriminated against by a complete stranger while having an invisible disability is intimidating. This type of action has caused anxiety and PTSD. These ordeals can be more than upsetting, they can be triggering.
As a stage IV advanced heart failure patient living with an LVAD I have been fighting to survive and overcome an invisible disability for over 18 years. Often feeling overlooked and unseen, I have long wanted to scream "What about me?!"
Living with an invisible disability
Life with an invisible disability can be lonely. At times I felt the only people who understood were those that have walked in my shoes. How could anyone truly understand or feel what they haven't lived, or can't see?
The shortness of breath, sudden palpitations, and body aches have caused numerous sleepless nights. The excessive fluid retention causing swollen legs, feet, abdomens, and face has left me staring at a reflection I did not recognize.
Just as important as my heart health, any one of these symptoms can take on a mental and emotional toll of its own. So how dare a complete stranger feel so entitled to direct me to give up an open space in a public lot?
Be your own best advocate
It's beyond troubling that as a disabled African-American woman I was put in a position of deciding to move from a parking space in an open and public parking lot or standing my ground. Standing my ground was my right, but far too many times I have seen this lead to injury and even death due to harassment and/or escalated law enforcement involvement over parking space disputes. Although I was parked legally I agreed with her request for me to move.
Multiple healthcare/medical businesses provide services to patients in this plaza (dental, lab, and physical therapy services). There is a salon, barbershop, and spa which are each integral to patient recovery and mental health. All of these businesses share this open and public parking lot.
Filing a complaint
In order to file a complaint, I went next door, asked for a business card, and the name of the individual that asked me to move. I stated that I myself have a chronic illness and an invisible disability. At no time did I receive an apology, or reassurance that there was no need for me to move.
Turning lemons into lemonade
Most disabilities are invisible
Not only were these actions insensitive, rude, harassing, and discriminatory in nature, they showed no compassion or even consideration for patients at neighboring businesses. Patients come in many forms with an array of ailments and symptoms. Most disabilities are invisible.
Better training needed
Perhaps there was a need for better training and understanding? This incident took on a cause of its own. I used this experience as an opportunity for awareness, and hopefully education. I outlined in my grievance that it is my hope that the company will better prepare its staff by addressing sensitivity training, ADA training, and Invisible Disability training; as well as, community engagement training.
As I later found out that my unfortunate incident was not the first occurrence, I felt it was imperative to include the patient advocacy department of my healthcare provider. Stressing to the adjacent business that it is also my hope they will work on building positive relationships with neighboring businesses.
This journey has definitely been filled with ups and downs; and I'm sure more to come. Each chronicle is a lesson, some harder than others. I'm learning to see the purpose in the most unforseen circumstances during the storm. As we know, some things are not visible at first glance.
Have you shared YOUR heart failure story with us yet?