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The Moment When I Decided to Get a Disability Parking Placard

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Today I want to talk about a topic that is very close to my heart. I’m talking about the inherent stigma that people with invisible illnesses feel when they use a disability parking spot. If you’re reading this and wondering what this inherent stigma is then I urge you to read on. I believe it will open your eyes to a new perspective and change the way you view people using disability parking placards without a visible disability.

I have been struggling with accepting my need for a disability parking placard. Right now, I am not doing well medically and I am still without a disability parking placard. I have been putting it off for a while, in part because I was having trouble accepting my limits, though that was not the only reason.

It was also because of the stigma associated with using a disability parking placard with an invisible disability. I have come to the decision that by the end of writing this article I will get my placard. I will do what’s best for myself; I will practice self-care. I hope this article helps people who are struggling to come to a decision. For the people just passing through, I hope this opens your eyes to another way of looking at the world.

One of the reasons I’m struggling to get the disability parking placard is that I fear by getting one, I am accepting defeat. Then by accepting this defeat I am foreshadowing my future with my disability. There are many ways to deal with these intrusive thoughts: I choose to center myself, meditate, and work to change my view on the world from one influenced by pain and chronic illness to one which can rise above the pain and physical hardships and still try to live life and prosper!

Disability Parking Placards, Invisible Illnesses, and the Social Stigma

Now for a very important topic, the social stigma of using a disability parking spot with an invisible disability. Individuals with invisible disabilities are often judged by people when we use a disability parking spot. The moment they see someone who looks able-bodied step out of a car that is parked in a disability parking spot, people jump to conclusions. We understand you assume we are perfectly healthy, but that is far from the truth. There are countless conditions that are not visible from just looking at someone, yet extremely detrimental to mobility and energy levels. You must always remember, ignorance is not an excuse for disrespect. It gives you the opportunity to better yourself and expand your views and I always recommend taking that opportunity.

For an individual with an invisible illness, whether to use or not to use a disability parking placard can be a hefty decision. Driving through a parking lot trying to determine if you are “disabled enough to use it” is a struggle most of us know well. Sometimes we give in to social pressure and park in a regular spot, knowing it may trigger a pain or fatigue episode. Other times we practice self-care and use our placards. If I may weigh in: use the placard, practice self-care, choose to do what’s best for you.

Many individuals with invisible illnesses often avoid using their disability parking placard for fear of being socially ostracized for taking a spot they have the legal right to park in. I believe at this point there may be a question echoing in people’s minds, “Why do people with an invisible illness not tell others what they have?” I’m going to take some time to go over this point; I feel a lot of good information can be brought up if I do.

Why do people with an invisible illness not tell others about it?

The effect of chronic pain and illness on the brain is often detrimental to normal function. It grinds you down to a raw nerve, and whenever something happens it affects you far more intensely. The pain, fatigue, isolation, and stress are already overwhelming and very difficult to handle.

What if you were already in this heightened emotional state, struggling to make it through the day, when a stranger came up to you in a parking lot and accused you of being perfectly healthy, of faking being sick? This is one of the worst things you can say to someone with an invisible disability! Many people in the chronic illness community, me included, would be pushed to their emotional limit in this situation.

Many people don’t realize that telling someone about living with one or more invisible chronic diagnoses is a very personal matter. It can change how people view us from that moment on. So in our day-to-day lives, we often don’t tell many people — and most of us would not feel safe sharing our diagnosis with a hostile stranger.

The Severity of Invisible Illnesses

Many non-disabled people don’t realize how severe invisible illness can be, and how much of a difference parking close to entrances make. I live with lupus; the full name is systemic lupus erythematosus (SLE). This is an autoimmune condition, which means the antibodies that are supposed to keep me healthy just went AWOL and started attacking me. This condition can affect any organ or body system in numerous ways. For example, lupus can cause severe light sensitivity. That is when someone is sensitive to the sun’s UV (ultraviolet) radiation, and it can cause visible damage to a person’s skin and can also trigger flares in the affected person.

Flares are a significant and sudden increase in the intensity of symptoms, and sometimes new symptoms also emerge. When I am exposed to the sunlight for more than a minute or two my arms start to tingle, then they quickly swell. Eventually, they will turn red and that tingle will turn into pain.

When I have lupus flares, my main symptoms are muscular weakness and fatigue, so I struggle to walk long distances. If you don’t understand what I mean by this, think back to your worst case of the flu. When you were so sick your arms and legs felt like they were made of stone. When walking around your room was comparable to the 12 labors of Hercules. When your body fails you at its most basic level, mobility is compromised. This is what chronic fatigue is like.

Now I want to take you through a memory that is burned in my mind. It was a bright, sunny and very hot day in June of 2021. I was having a significant increase in my symptoms and sun sensitivity in the prior week, so I was going to my rheumatologist (a doctor who specializes in connective tissue and autoimmune conditions). It was in the mid-90s and very bright out with no cloud cover. I drove 15 minutes to get to this appointment, and by the time I arrived, I was already in a moderate flare.

My arms had swollen and were in pain. I opened the door and got out of the car. Within 20 seconds of being in the sunlight, I was already feeling the fatigue and weakness creep through my body. I could feel the sun stealing my strength every second I was in it. I had yet to get my disability parking placard at this time. So instead of 20 seconds in the sunlight, I ended up walking outside for about 45 seconds. In that short time, between the heat and the UV radiation, my flare ramped up even more. I was having severe brain fog (issues with memory and cognition due to inflammation of the nervous system) and when I went in, I learned that I had arrived a week too early.

That ended up being too much for me and I reacted in an irrational and emotional way. I started crying because I felt like the one constant in my life, my intellect, was leaving me. I quickly apologized and rushed out of the building. I was stressing and having a mild panic attack by this point. I stumbled outside and made my way to my car, passing a mother and daughter sitting on a bench outside the door. I made it to the back of my car before my legs stopped moving. The pain in my legs was too intense and moving them was too much, so I just stood there for about 15 seconds trying to calm down and get in the car.

Then the woman who was trying to check me in appeared behind me. She could tell I needed immediate help, and luckily the mother sitting on the bench outside performed a random act of kindness. She notified someone up front that they needed a wheelchair for me outside. The lady took me in and I had my blood drawn, drove home, and proceeded to take two or three days to recover from that flare. During those three days, it felt like my body was screaming at me with pain. The weakness and fatigue were severe. That’s what happens if I overexert myself.

One of the contributing factors for this episode was the fact that I had exposure to direct sunlight. Even though I would’ve been exposed to the sunlight whether I used the disability parking placard or not, the exposure would be much shorter and for people with severe sun sensitivity, 25 seconds can be the difference between minor symptoms and a severe flare. I don’t know for sure whether or not that would’ve changed the experience, but one of the factors that led to it was me procrastinating getting my disability parking placard due to the stigma I felt.

Another factor I wanted to point out was how fast all of these symptoms came up to that severity level. One reason why many people don’t believe people have invisible illnesses is because of how fast they can flare up and then go away. In a 10-minute span, I could easily go from feeling great to so weak I can’t get out of bed. And there can be multiple catalysts for the flare. The triggering factor was the sun exposure, but the increase in my stress level because of the panic attack made it even worse. This is one of the best examples I can come up with where the stress causes physical issues or makes the current symptoms even worse in chronically ill patients.

A disability parking placard is not a sticker telling the world you are weak. It is a badge telling the world that you know your body’s limits and that you are taking your health into your own hands and actively practicing self-care every time you use it. For all the people struggling with this decision, the moment I decided to get a disability parking placard was the moment I knew I wanted to take an active role in bettering my health.

Even though the odds are stacked against us, we are strong. We can persevere through the pain and malaise. We are so much stronger than anyone would guess! Just think of your pain tolerance before the onset of illness and now. Stay strong and look to the future for hope!

This story originally appeared on Living With Hidden Pain.

Getty image by BW Folsom.

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