woman crying in her car

When a Woman Swore at Me After I Parked in an Accessible Space

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I’m sitting here broken and sobbing.

I just had one of the most humiliating experiences a person can have, and the worst part? 

It won’t be the last time.

It’s a sunny Tuesday afternoon. I’ve just had my hair done for the first time in a year; my boyfriend arrives tomorrow and we are off on holiday with the family this the weekend. I’m smiling and excited as I park my van near my daughters’ school, ready to collect my children. In the playground, moms and grandmas tell me how great it is to see me, and how good I’m looking after a week or so off the radar, feeling poorly. It’s quite lovely, and their kindness and words mean the world to me when I have been feeling so low.

I collect my youngest two and meander back to the car, noticing a traffic cone on the pavement blocking my driver’s door. That’s weird, I think, while struggling to lift and strap my 3-year-old into her car seat on the road side. I become vaguely aware that a woman is ranting to her daughter, “F*cking unbelievable. Who does she think she is?” I continue trying to coerce my monkey into her straps (I can’t physically do it without her cooperation). “There’s f*ck all wrong with her. People are so f*cking lazy. What the hell is she doing parking outside my house, and could she get any f*cking closer to my car!”

She is talking about me.

I look up and she’s standing five feet away from me, glaring at me with such venom, while continuing to rant to her uncomfortable 20-year-old daughter, who is strapping her own toddler into a stroller.

My recently potty-trained daughter then had her first accident. I continue to ignore the irate woman, now mortified and bright red, and release my daughter from her belt and pop her by my van wheel to sort her out. “Now her f*cking kid is gonna piss on my car, unbelievable!” 

My daughter now notices the woman and becomes totally embarrassed. I tell the woman, “She’s potty training,” clean her up and strap her back in. I then walk back slowly around to the driver door, remove the cone blocking it, that I now realize was put there by the woman, and try to get in.

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“You’d better not reverse into my bloody car!”

My van is a foot away. I am an excellent driver and maneuver my van with great skill. In 20 years driving I’m yet to dink anyone or anything. 

“I have to drive an automatic, it won’t roll back,” I mumble, now fighting back the tears, trying to retain some shred of dignity as I drive off (without hitting her car).

I get around the corner, pull over and burst into tears. 

A million things I should have said flood my mind. Why didn’t I explain that I need to park there, and point to the parking pass, and blue badge on my dashboard? Why did I just stand there and take that abuse in front of my children, when I should have stood up for myself? Why didn’t I say anything, literally anything, to defend myself?

In that moment I felt shamed, frustrated, humiliated, and like I am still fighting a battle I can never win.

I don’t look sick.

I don’t look disabled.

I am a “fraud.”

I have had people challenge me for parking in accessible spaces before, but never with such venom. The irony is that anyone could have parked where I did on the street. It was a safe, legal, free space. It’s only due to congestion that people are asked by the school not to park on the street unless they need to. There is no law being broken and no safety being risked by any single road-tax-paying driver parking in the space I chose to park in.

People need to see the profound impact that such ignorance has on the individual. It’s beyond hurtful and humiliating to have some one shouting at you that you are lazy and fake, when actually every day of your life is a battle. I experience pain and limitations that most people thankfully will not in their lifetime. I wouldn’t wish it on my worst enemy. 

I have to fight for everything.

To live. For money. For my sanity. To stay strong. To be the best mama can be. To get up. To do the dishes.

The fact that I choose to fight with a smile on my face and joy in my soul should be something to be celebrated, not something I should be publicly shamed for.

So this one is for all the ignorant people out there. Shame on you. This is how you make a person feel when you make judgments of them without having a clue about their life:

woman crying in her car
Kirstie right after the incident with the woman on the street.

I hope that face becomes etched in your mind, so the next time you loudly proclaim someone doesn’t look ill or sick or disabled, without having any idea of their private battlesyou stop yourself. Instead, smile, and continue going about your business, as I am mine.

This is me fighting back.

I am not ashamed.

And if this post exposing me at my most vulnerable, protects someone like me in the future?

Then love conquers hate.

Hope beats fear.

Kindness and compassion wins.

Follow this journey on You Gotta Have Gumption.

The Mighty is asking the following: Share with us the moment you stood up for yourself or your child in regards to disability or disease, or a moment you wish you had? Check out our Submit a Story page for more about our submission guidelines.

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To the Student With Chronic Illness Who's Not Graduating 'On Time'

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A year ago I watched most of my high school class of 2011 graduate college. Over the last week, the remaining students received their diplomas. I am genuinely happy for them, but that happiness is quickly replaced by bitterness, jealousy and anger. I should be closing that chapter with them, but my chronic illnesses don’t care about the plans I had for my life.

It will take me twice as long as my peers to finish college. This fact has caused me sleepless nights and ongoing devastation. However, when I look back on the real education I have received in the last five years, I realize I wouldn’t change my situation even if I could.

I have spent nearly two of the last five years hospitalized. There have been countless surgeries, infections, and dead ends. There were so many times where I thought we were turning a corner only to be thrown to the ground again. Each time I had to pick myself up and start over. These setbacks taught me that I am resilient, much more than bouncing back from a bad grade ever could.

I remember the night a gastrointestinal doctor came into my hospital room to discuss feeding tube options with my mom and me. Terror overtook every inch of my body.  That feeling was replicated too many times over the next five years. Whether it was while I was being wheeled into an operating room or transferred to an ICU, that fear would find its way back to me. Now I know that I can overcome anything that frightens me, because no presentation in front of the class will ever fill me with more dread that I’ve already experienced.

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Erin (left) and her sister Caitlyn.

You lose friends when you are sick. Illness isolates you from your former life and it is no longer an easy task to keep up a social schedule. For many years I hated the seclusion and felt left out. Now I realize that this was the best gift I could’ve been given. Sometimes people fade out of each other’s lives, and now I realize that’s OK. Ten years from now, I will remember that my parents spent more nights in plastic chairs than their own bed. I will remember the friends who learned how to draw up my medications. I will remember that my sister chose to spend one of her birthdays in the hospital just so she could spend it with me. When you are at your lowest, the people you need in your life won’t be the ones you hung out with at parties.

A few years from now I will walk across a stage to receive my college diploma. It won’t matter that I am older than the rest of my class. It won’t matter that I failed a test because brain fog appeared with a vengeance. It won’t matter that I had to take a semester off because surviving was more important. I will know that I am capable of so much more than any healthy person can comprehend. I will have received an education greater than any degree.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

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The Spoon Theory Gave People the Wrong Idea About My Illness

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Many people with disabilities that affect energy levels have adopted the Spoon Theory as their mantra. Indeed, when I first read it, the words struck a chord with me — so much so that I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know, I shall give a brief description. The Spoon Theory is a concept written by Christine Miserandino whereby energy is equated to spoons. Basically, as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very, very true. In basic terms, the Spoon Theory is an excellent way of describing life with a chronic condition. However, I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have that day. For me there is no set amount I wake up with. I cannot bank on having six or 12 or even one spoon. The theory states that going over your energy reserves on Monday will take away from Tuesday. This is certainly true. But I can have a completely restful day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 

Often I wake in a morning and think, “Yes! Today is a good day!” Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what happened. 

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On top of this, the amount of energy activities take changes on a day-to-day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummeling me rather than water. My joints may feel stiff and rusty. Everything could take 10 times more energy. I cannot count on being able to do tomorrow what I managed today. 

Finally, there’s another complicating factor: Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you, you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes, the Spoon Theory is fantastic. But unfortunately, it gave people the wrong idea. They thought if I rested, I could then plan activities. If I worked my day so I didn’t have more than one thing happening, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverized by a Hulk-type monster. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 

Though I’ve come to realize it doesn’t fit me, the Spoon Theory is still worth a read! 

Follow this journey on This Little Life of Mine.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? Check out our Submit a Story page for more about our submission guidelines.

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When I Feel Like Less Than the Woman I Was Before My Illness

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Once upon a time, there was a young woman who thrived. Her life was full of beauty and exploration and learning. She was in love with life and in love with living. Her moments were filled with good friends and hard work and creative expression and the joy of play. She was happy.

And while the beginning of this tale makes you think of a Disney princess story, the reality is more like the original, dark and frightening tales by the brothers Grimm. The woman in our story isn’t swept away by a prince, and we aren’t certain there will be a happy ending. We can hope for that, but we never want to expect that, because our heroine in this story is not a princess-to-be, but a woman who is chronically ill.

woman and little girl underwater in pool
Christy and her daughter Rayven before Christy became ill.

She has multiple co-occurring illnesses, and while she was once full of life, she is now weighed down by much.  

It is hard to live a full life when you suffer from illness of this kind. And while we often hear stories of the pain and inconvenience and fatigue and stigma of disability, we don’t often hear about one of the most difficult parts of the chronic illness story — the change required.

I rarely see articles or message boards that deal with the difficulty of change in chronic illness sufferers, but it is an important topic. The woman in my first paragraph — the happy, involved and active one — is the woman I once was, and I approached life with gusto. Now the only things I approach with gusto are ice packs, Netflix, pajamas and naps. While I might be excited to go on a date or have dinner with friends, I simultaneously dread the drain on my body and mind that such events will have. It is very difficult to find things that I am capable of, and even more difficult to be thrilled to participate since I know that the aftermath may be an increase in symptoms or days in bed recovering. And this isn’t something I mention so that I might gain your pity. I absolutely do not want pity. I mention these things because of the psychological affect these changes have on me and others like me.

Being less than you once were is very difficult. And my friends would assure me that I am not less valuable after that statement, and I would appreciate their loving support. But the point here is not that I think I am less valuable. I’m still a person, so I have the same value of any other person. My point is that I have changed in ways that make me not feel like myself anymore.  

I have a woman in my mind who commands respect and works hard and loves life and seizes opportunities and laughs like madness and throws all of her energies into whatever she is working on and offers her whole heart to friends and family and pours herself out for the good of others.  That is the woman in my mind, but not the woman in the mirror. I have changed. I have been forced toward those changes, and I do not like them. This isn’t the life that I want, and I am not the woman I wish to be. No matter how hard I fight to gain greater wellness, I still feel like less than I once was. And that is heartbreaking.

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Christy after she became ill.

I work at loving and being proud of the woman I am today, despite the many ways my society belittles, degrades and discounts who I am today and what I am able to accomplish. But that work is not easy, and it is constant. Because each time I look at my calendar, or look in the mirror, or look at my bank balance, I see something other than what I desire for my life. I never imagined that my self-image could be so shattered. I never imagined that I would need to change in so many significant ways. I never imagined being in the life I now live.

I spend much of my time in psychotherapy, mindfulness practice, yoga, and other practices to increase my awareness and my love of the body I am in today. It isn’t as I wish it were, but I am beginning to accept it as mine, and as good enough and worthy of my love, kindness and respect. I am starting to understand that I am a warrior, and that I work very hard. I am just fighting for new and different things. I may not change the world, but I can walk almost a mile, and I am losing weight, and I am sleeping better and feeling stronger than I have in two years. My goals have changed. I now fight for nine hours of sleep and improved flexibility and a sink without dirty dishes and increased flax consumption and getting to the pool once per week. And even these goals are not often met, but the fact that I keep working toward them is telling. It expresses that I am still me — still a woman who wants much and works hard and embraces life. And while life looks far different, and I may struggle with and continue to mourn the changes for some time, there is hope.  

I hope for increasing wellness. I hope for work. I hope for social engagements. I hope for understanding and knowledge and acceptance. I hope for a society that lets go of its unrealistic and false narratives and embraces equity and liberty for all — even the disabled and poor woman that I am now. I hope for cures. I hope for support on my journey, and fundraising donations, and kindness and care. And I hope to return as much as possible to the woman I was before I became sick, but I also hope for acceptance and self-compassion and love for the woman I am now.  

Change is difficult, and society doesn’t make it any easier to cope with the changes that chronic illness requires. But we can all change. Society can change. Attitudes can change. And at some point, we can all come to terms with invisible and chronic illness.  

And we can live happily ever after.

Follow this journey on Learning to Be Whole.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? Check out our Submit a Story page for more about our submission guidelines.

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How My 3-Year-Old Is Teaching Me to Accept My Chronic Illness

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Katy and her daughter smiling
Katy and her daughter.

Two weeks ago I finally gave in to my rheumatologist’s request and signed myself out of work on a temporary leave of absence. I have been fighting the leave for nearly a year. Doctors had told me repeatedly to take the leave of absence, consider my situation and give my body rest. I resisted again and again. I love my job, and I have given everything over for my career. I am the breadwinner for my family. I couldn’t take a leave of absence. The final straw was a monstrous flare that left me unable to sit up at my desk for more than 30 minutes without having to lie down in the next room. I was opening our building at 7 a.m. and needing to prop myself up by my elbows, on ice packs fifteen minutes later; it wasn’t good. I knew I couldn’t make it another week trying to hide the severity of my case. I booked an urgent appointment with my physician and left for the doctor thinking I would be back to my desk the next morning. By that afternoon I was being dropped off at home by a colleague with instructions to not come back to the office until I had taken a good, long break. And truth be told, I was heartbroken.

For the first time, I am being forced to face the reality of my disease and giving myself over to it — total surrender.

That afternoon I collapsed into my bed and cried for hours. In the midst of my grief, my 3-year-old climbed up beside me and laid her head down next to mine. She told me about her toe and how she hurt it climbing onto the couch. She talked about mosquitos and how her cousin is afraid of them, but she’s not, so it must mean she is a big girl. On and on she talked, about books, her dolls, her cousins — a 3-year-old stream of consciousness. Not knowing the depth of my sadness but recognizing her mom needed something in the way of cheering up, she stayed with me. When I needed to nap she laid down next to me, nose to nose and we fell asleep together. The next day was the same. At some point, on the third day she came into my room and woke me from a dazed sleep to remind me there was still a life to live.

Get up now, mom. The sun is shining. We need to play.”

And she was right.

Katy's daughter
Katy’s daughter.

Slowly over the past few weeks, I find myself being less afraid of admitting my challenges. When I wear my compression sleeves, she plays dress up and decorates her arms. When I had double cortisone shots (one in each shoulder) I could barely sit up when I came home. My daughter promptly demanded two bandages to be placed on her shoulders, matching mine. She is my little healer. When I need compassion and a companion, when I can’t sit up, she stays beside me and colors or sorts her dolls in rows and dresses them. When I need a boost, she somehow senses it and nearly always demands, “Time to get up. Time to go outside, mom.” And she’s right. In the midst of this I have finally realized something imperative — my life is not in decline, it’s different.

I haven’t been able to accept this until I had this time at home, away from my desk, beside my daughter. These challenges, this change has felt to me like a downfall. In the past few years, as my health has faltered, I have barely used any of the “tools” I need. Being home and with her I see her acceptance of me as who I am today, and I wear the compression sleeves, use my voice-to-text translation systems, sleep through days at a time if I need to do so. She reminds me we will face this together. While the life I lead today is in stark contrast to the one I knew even a year ago, this 3-year-old girl is teaching me how the grace we give ourselves is the only way to survive in the face of fear and change. I’m still learning. For now, taking I’m taking one course at a time from my tiny professor. In her classroom there is only one requirement — total surrender.

Lead photo source: Thinkstock Images

The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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17 Things People With Chronic Illness Wish Their Coworkers Knew

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Simply managing daily life with a chronic illness can feel like a full-time job — there’s a reason the term “professional patient” has grown popular. Add full- or part-time work on top of that, and life can get even more challenging.

Unfortunately, people may not fully grasp how difficult it is for their coworkers to come to work and complete their responsibilities while juggling pain, fatigue, doctor’s appointments and medications. So we asked our Mighty community what they wish their coworkers knew about their lives — hopefully encouraging anyone who has a chronically ill coworker to show more understanding and less judgment.

Here’s what they told us:

1. “[I wish they knew] how very much it hurts me just to be there. I wish they would also be more patient with me, when I need to take some time off. I’m not slacking, I’m recovering.”

2. “I wish they would see that I’m not asking anyone to pick up my slack, but a little compassion would go a long way.”

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3. “When I miss work, not only is it none of their business, but I would appreciate the snide comments be kept to themselves.”

4. “Although my body feels like it has already worked a full day by the time I start at 7 a.m., I always come in with a smile. I ask that you take a second to return the smile instead of passing judgment and discriminating.” 

5. “I just wish I had coworkers. That would mean I was lucky enough to have a job. I have been on disability for almost four years, and it really sucks! I lost my career due to my illnesses, and my master’s degree is going to waste. It is frustrating and can be humiliating at times.”

6. “When I say ‘I hurt too much to work a double shift today’ I’m not being selfish and/or using my rheumatoid arthritis as an excuse to get out of work. If I was physically able to, I would. I am not a wimp.”

7. “I wish my coworkers knew and understood the things I do to take care of myself are not optional. Poking my fingers, taking insulin and eating snacks all day can be a small inconvenience, but I try to do it quickly and discreetly without much disruption. If I skip doing these few small actions, things could quickly turn bad and they will be the ones to have to call 911.” 

8. “I’m disabled due to chronic illnesses and haven’t been able to work since 2007. I would tell coworkers I’m sorry they had to pick up my job responsibilities while I was sick and that I was grateful for all the support I received during my last year at the office. And that I miss both the job and my former co-workers very much.”

9. “I sleep fully dressed for work the next day, just so I might have the energy to get to work and make it through the day.”

10. “I would trade the constant pain, anxiety and depression to be able to happily work 50 hours again. The guilt from missing work increases stress, which increases pain. I miss working all the time. I sit and cry every time I have to call in [sick]. I fear being fired every time I do make it in. I do not wish any of this on anyone.” 

11. “I would like to go back in time to tell my past coworkers the real reason I missed so much work… I have fibromyalgia, lupus and chronic fatigue syndrome, and I never told a soul. Not even my boss.”

12. “I’m not lazy, unmotivated or unwilling, I’m sick.”

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13. “Not every day is the same for me. If I’m sick Monday and well Tuesday, that doesn’t mean I wanted a long weekend. That week, Monday was my bad day. I wish there was more flexibility — working part time helps, but my body isn’t reliable so I can’t rely on it to be in a good day every Wednesday each week.”

14. “When I make a mistake, it’s usually the illness causing it. I am on top of things as best as I can be so please be patient with me when my best isn’t good enough.” 

15. “My entire day revolves around conserving my energy to be here for four hours.” 

16. “I get sick of hearing myself say ‘I’m not feeling too good,’ so I keep it to myself. I will say I had a good weekend when in fact I didn’t because as usual at some point I was crying in pain. I will put on a happy face when inside I feel like I’m at rockbottom, just so you all don’t get sick of hearing me moan. If I say I can’t do something it’s because I can’t do it, not because I’m a shirker or a slacker. Trust me, there is nothing more crushing to me than feeling like I am letting the team down.” 

17. “I know I talk about my illness a lot, but it’s because it is constantly on my mind because it it such a huge part of my life. I’m not looking for sympathy, I’m just trying to verbalize the thoughts that are always there and hopefully help them understand my situation a little better.”

What do you wish your coworkers knew about your life with chronic illness? Let us know in the comments.

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