Getting a Disabled Parking Permit and Getting Over Stigma
I wasn’t able to find a parking space within reasonable proximity to the front of the store. By the time we hiked from the parking space to the store, I wasn’t sure if nausea or the pain radiating from my insides, feet, or chest were going to make me pass out right there on the spot. Or vomit. Or both. This wasn’t a one-off occurrence, either. It was happening on the regular.
“Why do you keep doing this to yourself?” a family member asked on a particularly sweltering day.
This is a day that sticks to my memory like an unexpected piece of gum you find on the bottom of your shoe.
Extra-intestinal manifestations of Crohn's and colitis
It doesn't matter if you’re diagnosed with Crohn’s disease or ulcerative colitis, there is a possibility of developing extra-intestinal manifestations (EIMs). By the time I had sought proper medical intervention for inflammatory bowel disease (IBD), I had developed many EIMs. It’s actually one of the reasons I became so passionate about IBD advocacy. I didn’t want to see others have to endure many of the things I did.
It’s funny how we can be so eager to help others before helping ourselves. If I had witnessed someone repeatedly going through the scenario above, the first thing out of my mouth would be, “Please speak to your doctor about getting a disabled person parking permit*.”
It’s a no-brainer. But when it comes to taking care of me, that’s an entirely different story.
Debilitating pain from Crohn's disease
The 1st day of over 2,000 days of pain. I began to become debilitated from EIMs associated with IBD in early 2012. Over the course of the year, my health declined further.
One morning in early 2013, I woke up and swung my legs off the bed as I have done every morning for as long as memory serves, except this time I crumbled to the ground. The pain was like what like what you imagine a lightning strike would feel like.
It was a searing pain that surged through an area of your body and knocks the wind right out you. I crawled to the bathroom because it was more comfortable than trying to get up and walk.
That was a defining morning. It was the first day of living with what is now over 2,000 days of arthritic pain in my feet.
Prior to that day, parking in the humid Florida year-round summer would leave me with chest and GI pains, as well as nausea. Symptoms of which no one should have to suffer if they can try to avoid it, but I did because I thought this was just how it was.
This is why, when my family member wondered out loud if I should ask for a disabled person parking permit, I was dumbfounded.
Asking for a handicapped parking permit
It doesn’t hurt to ask. It was a few months after the new pain and swelling started in from ankles to toes. The pain was documented by my GI, the doctor running the infusion center, and the primary doctor. I had started a biologic; my first. It wasn’t helping that portion of inflammation for very long.
I asked my primary care provider's thoughts on the parking lot experience and if she agreed I should get a blue parking permit. She asked if it was an every time thing. I replied it was happening pretty regularly.
She looked at me like I had two heads. “Why haven’t you asked about this sooner, then?”
I don’t know!
Okay, maybe I do know. I was afraid of taking a needed spot from someone who needed it more. I worried I would take a spot from someone in a wheelchair, someone with a more severe heart condition, a disabled mother who also has to manage a stroller. The list goes on. I am a worrywart for everyone else. And then there was the other worry.
Asking for help rather than suffering
The internet is a pool of cruel stories when you look for them. Even way back in 2013, nastygrams were left on the vehicles' side-view mirror. These stories always stirred my grits. They also instilled a tinge of fear in my core and I believe that helped prevent me from asking my doctor sooner if I qualified for a permit.
That’s a regret I’m happy to admit if it will help someone now choose to ask for help rather than suffering.
To this day, I still see viral posts of nastygrams directed at people with invisible conditions using their handicap parking permits. Truth be told, they leave me stressed and worried about those on the receiving end of the notes.
Practicing self care is NOT SELFISH
I’ve seen the nasty looks. I've also received the judging stares of those who look at me with sheer indignation, and have even had snide remarks directed me or muttered under breath as they pass by.
The answer to all of the above scenarios is, “No.”
Easing the burden of Crohn's with a parking permit
If asking for help by getting the disabled parking permit helps ease the burden that IBD and its EIMs place on your body, choose you.
There have been several times where someone passive aggressively makes a comment near me about my parking in the big blue spot. I took a deep breath and chose to educate rather than overreacting.
I asked them why they said that. Two people chose not to engage and walked off. And one person did stay. We had a pleasant enough conversation. It’s my hope I left them with a piece of mindfulness toward invisible conditions.
Have you considered asking for handicap parking permits because of your IBD and its EIMs, but are afraid? Let’s discuss.
*Florida’s DMV refers to the permit as a disabled person parking permit.
What is your comfort level disclosing your IBD to your employer?