Trouble in the Parking Lot

I know what you’re thinking. You see me getting out of the van at the mall. You see the handicapped tag around my rear-view mirror. I see you waiting there, sizing me up, wanting to make eye contact to see if I’m someone who actually needs this spot or if I’m working the system somehow.

And here’s what I need to tell you:

I wish you are never the person in my orthopedically-therapeutic shoes. I wish that you never know, hour-to-hour, much less day-to-day, what you will be able to do or for how long.

Today, I probably need the cane. Will I use it? Probably not, because I’m having a bad wrist and hand day, too, and leaning on the cane only exacerbates the issue. I know I have two hours tops to be productive, and you are witness to this bit of my struggle.

I often park far back, at the end of the line of cars, and make myself walk the extra painful steps, even when I am hurting. If I feel like I have enough energy that day to get it done, I will force myself to do it the way a lot of people make themselves go to the gym even when they feel lousy or fatigued, because I know this is probably the most exercise I will get today. Maybe for a few days.

Today is not one of those days. Today, every single part of my day has been a struggle.

But you go on and keep staring and mumbling and pointing. Shake your head. Tell your friend about the person at your workplace who uses her mother’s old handicapped placard even though it’s wrong, because it’s too hot to walk so far to the main building in the summer heat, or because the cold weather makes her knees hurt. Wonder if this is the same kind of situation as you point to me with your chin. Wonder if anyone checks to make sure the system isn’t being abused.

I realize I’m judging you, too, assuming the worst, because it’s happened often enough that I’m trying to justify to myself, even as I try to lever myself out of my seat, whether or not I could have parked farther away today and just avoided this.

And as for the lady who honks and yells from inside her air-conditioned car because it’s taking my teenagers too long to cross the road with me? Maybe consider that they’re slowing down for my benefit. Just because I’m not using my “rollator” chair or my cane today doesn’t mean I’m not struggling just to get across the road. That half hour sitting in place in the car was enough to freeze up my hips, knees, and ankles, and it’s going to take a while before I’m able to move easily.

RA is more than joint pain before a rainstorm

This isn’t discomfort that I’m dealing with. Rheumatoid arthritis isn’t simply joint pain before a rainstorm, or an old volleyball injury acting up. It’s the fluid in my eyes and lungs either drying out or becoming inflamed. It’s joints swelling as if they are all broken or red and hot as if they were infected. It’s my body trying to “help” me through a misguided and over-active immune response. It says I am the enemy. It’s fighting things you can’t see. And the whole time, I can barely think straight for the pain that never ever goes away.

I won’t stay at the store for long, and I planned my whole day around this one trip because I knew this would probably happen. We will rush our selections and the kids will help me through the line. At that point, though, I’ll be so exhausted I will beg to leave the store so I can sit down again.

Yes, was just here yesterday buying shoes. I didn’t stay long then, either. I was almost crying over the fact that I knew I’d have to return to the store today to exchange them, because I can’t just casually run to the mall when I feel like it. I have to measure out my hours and decide who and what gets the tiny bit of me I can spare, when I can spare it.

Be happy you aren’t the one who needs that handicapped spot, and that you can cross the road at a brisk pace. Be happy for me, that I have kids who don’t complain about not being able to hang out with their friends at the mall because I won’t be able to leave the house again to pick them up later. Be kind and don’t honk the horn at us. I’m doing the best I can.

I know you might think me lazy. You might have even seen me earlier at the grocery store, pushing my own cart and moving my things into the trunk by myself. Today I had an okay morning. I pushed myself way harder than I should have. I’m paying for it now.

I’m under 50, but I look older, don’t I? I know. The RA, the meds, the lack of sleep, and the pain have taken their toll. Old age is something that used to scare me before I had kids. Now I’m just hoping I make it to middle age on my own two feet, and that RA complications don’t prevent me from seeing those later years of life. Enjoying them? I will do my best. That’s what I’m doing now — or, trying to, anyway. It’s hard.

It’s the little things that help

I could be the person who leaves the shopping cart wherever my car is parked, but I won’t. I’m going to move slowly while I deliver it to its proper place and return to my car. I know what it’s like to have to stand around waiting for someone to bring the carts back inside the store when it takes forever to collect them. For me, that shopping cart is kind of like a rolling walker. I don’t want the next person with RA or some other physical challenge having to walk all the way back out to the parking lot to get a cart when I could deliver it to the collection spot myself. Want to help? Do the right thing. Deliver the cart back up to the front. Offer to take it up for someone else, even if they don’t look like they have a physical limitation. They might be a mom with little kids in the car, and not want to leave them alone. That makes sense, right? You wouldn’t judge them for it. So, help. Do what you can and extend the same benefit of the doubt to someone who doesn’t have an obvious handicap. I know what it feels like to be the person for whom getting food for the table is the hardest thing I do all day, and I don’t want to make someone else’s day harder.

I know it takes me longer to back out of my parking spot than you’d like, once I get going. I’m a very careful driver. But turning the steering wheel hurts fiercely. So, does twisting to put on that seat belt. So does turning my head. I’m doing it anyway… just more slowly than your patience can tolerate. Tomorrow, I will stay at home. I’m hoping I didn’t forget anything important at the grocery store. It happens. It’s hard to remember little things. My short-term memory suffers these days.

I’m slow. My days are unpredictable. Mornings are usually painful. Midday is often easier. Evenings find me completely out of every kind of energy — mental, emotional and physical, most of the time. I am not the face of rheumatoid arthritis. I am a face of someone — one person — with the autoimmune disorder. There are so many others like it, and so many others that are vastly different.

So I hear you and I see your expressions of doubt. I try to not let it get me down.

Be happy these things come more easily to you. We all have struggles at some point. Mine makes every day hurt. Every single day. It never stops, and it will only ever get worse. It’s a progressive condition. It doesn’t care at all about whole-body pain, and fatigue, and a hurt that nothing can reach, so I don’t even try.

Just… be patient with me. Be kind. And, maybe, if you or someone you love is in my ugly-but-comfortable shoes someday, you’ll be more likely to extend compassion and patience, and less likely to judge.

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

Comments

View Comments (10)
  • Mary Sophia Hawks moderator
    3 months ago

    Kim, I am truly sorry you suffer so. All of us here understand what you wrote so eloquently. There are several articles on here about managing people’s perceptions. When I hurt the most, I really don’t care what others think. Because I know they don’t have a clue.
    You must be so proud of raising teenagers who understand and support their mom. They will be amazing adults who change our society.
    Please continue to care for yourself and reach out here on RA.net, where you can find true empathy.
    MS

  • MaryB
    3 months ago

    Me too. I could have written this, but maybe not as well, and not today. Bad pain day, and the only one who understands is our cat. She has arthritis in her joints too. I’ll write more when it’s a better day. Thank you for putting this on.

  • kstack60
    5 months ago

    Thank you for posting this. I could have written it, same thoughts. I still can’t seem to get it through to friends and family what this is like. I am grateful for those of you here that understand. It makes me know this is not “all in my head”.

  • MaryB
    5 months ago

    This is an excellent article.It hits on so many points that we all go through. I have learned to do the best I can but it may not be fast enough, it just may be a very slow day because of the pain. I pray that I never become one of these people who judge. As my primary care doctor said seven years ago” no one can know all that’s wrong because all the damage is on the inside”. Please don’t judge us just because you can’t see what’s wrong, we are dealing the best we can.

  • elvis
    7 months ago

    You Tell’Em Kim!
    I feel the same way, and get quizzed every so often, “I know of a disabled military guy that uses that spot” oh, so know he owns it!
    Like you, I only use it when I have to.
    But I feel guilty when I do, so I go to their level, I limp like I have a prosthetic limb.
    So I meet their requirements to use the spot!
    I’m a deviate!

  • GingerS
    9 months ago

    I too know what your going through. I’m ashamed to say. Sometimes I look at people parked in the handicap parking places. They appear totally healthy. Jumping in and out of the car. Loading groceries without difficulty. I feel a resentment building up. I have to remind myself that they may have an invisible disease also. Then I feel guilty.
    By the same token. I too have run into people just wanting to help. I am obviously handicapped. But do my own shopping. I had a young man who turned around. Did not say a word and loaded my groceries onto the conveyor belt and turned back around. I was like “Wow”. I have had so many strangers help me while I’m shopping I cannot express my gratitude enough for their help.

  • Nitrobunny
    9 months ago

    I know this scenario all too well and it never ceases to amaze me that people honestly believe they have the right to be parking lot judge, jury and yes executioner (some of these looks I get could kill). I doesn’t help that I drive a Corvette. Yes it’s harder to get in and out of but I’ve worked hard all my life and dammit it makes me happy. I can’t go for that seven mile run anymore and I can’t ride my Harley or go skiing anymore but I can enjoy a little bit of horsepower once in a while.

    Anyway, I’m happy to tell you there are people out there who are the opposite of the parking lot warlords, as kind as those who judge us are cruel. I came across one at the grocery store. I barely made it up and down the aisles as I strategically followed a route to spare as many steps as possible. Each step more painful than the one before. I was spent. It was one of “those” days. I had no choice I was out of essential things and I had to grocery shop. When I checked out the bagger quietly said to me “I know you’re in pain, please let me put these in your car for you.” I could have cried. In fact I think I had tears in my eyes. I hurt that badly. He swiftly loaded my bags into my car, closed it and opened the drivers side door for me. I reached into my pocket and handed him what I knew was a $20 bill. He looked surprised and told me I had made a mistake. I said “if I had more I would have given you more.”

    In a world where we all could be anything, the best thing to be is kind and that day his 10 minutes of kindness was everything –

  • Monica Y. Sengupta moderator
    9 months ago

    Hey Nitrobunny! Thank you for sharing this beautiful story. It reminds me of something that happened last week. I was struggling to put cat litter into my car but I managed it. When I turned to return the cart a man came up to me and said “Let me take that from you.” I was floored. He smiled pleasantly and there was no surprise or judgement in his expression. Some people can be cruel but every so often I’m reminded there are some beautiful people left in the world.

    ~Monica (RheumatoidArthritis.net Team)

  • Nitrobunny
    9 months ago

    Thanks Monica! It really is nice to be reminded there are still kind people in the world.

  • CarolQ
    9 months ago

    I totally get what you’re saying. I’m 42 and have a handicap placard, which I only use when I need to. When I do use it I hate the dirty looks I get. Just because I don’t look disabled, doesn’t mean I’m not. I go through struggles that some wouldn’t even believe.Just because I look good or “normal” on the outside, doesn’t mean I don’t struggle everyday with EXTREME pain, not to mention the fatigue. I try everyday to be my best and that’s all I can ask for

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