Day 3 – The good, the bad, and the ugly cry.

Mornings are usually the most difficult time of day for me to ambulate. Since I have arthritis in every joint in my body, there is kind of a “wake up” period before I feel comfortable to move around and start the day. Because of this, I was really concerned that there wouldn’t be a “day 3” on my mission, but something really cool happened.

After my medicine kicked in, and I started to wake up a bit, I naturally felt pulled to sit down at my makeup table.

If you’re reading this and you follow me on Instagram (@chronicmotivation), you probably know that I’ve been working on an apartment decor overhaul for the last year. In that time, I had my eyes set on this beautiful white-laquer desk from CB2, but I couldn’t buy it initially because it was really expensive, and the delivery fees were out of control. After scouring craigslist for months, I ended up finding someone who was selling it for less than half of what I would have paid through the store, and I ended up bringing it home in mint condition within the hour.

With the new furniture addition to my den/get ready room/writing area, I was inspired to go out of my way to organize the drawers in the desk in a way that would be conducive to me actually using all of the makeup I have. I think like many women, we tend to have 24 blushes and 36 eye shadows, but since it might be thrown in a makeup bag, or even some kind of storage bin, it’s hard to see all of the options that are available. I’ve always been really big on keeping things visible in my home, because I believe that when you start to “store” things in a place that’s hidden, you forget quickly that they’re there, and you might as well not have those things in the first place.

I’ve had the makeup display setup for a couple of months, and I probably only used it twice in that time. But there was something to be said this weekend for being able to simply slide open the drawers and see everything in it’s place, and to have fun with the options laid out in front of me. Remembering the joy that it brought me, I was excited to sit down before work this morning and have some fun.

Day 3 makeup dog.jpeg

I went to work and did my thing, and then I decided to make a second trip to DSW to see if the location near my job had some other choices. It probably sounds like I’m a shoe maniac, but I promise I’m not. Buying shoes that are flat, that don’t look like they belong in the senior center or on a 5 year old, are comfortable, and that I can afford, seem a less likely find than a unicorn directing traffic on a Tuesday.

Even though I didn’t get exactly what I was looking for, I did up leaving the store with some cute new compliments to my collection.

 

And then, I did something fantastic. Part of this journey, since I’m sort of writing the rules every day as I go along, is to really challenge myself to step outside of my comfort zone (physically and mentally…), and to check something off that I either have been meaning to do for a while, or doing something in general that breaks up the monotony of my “wake-up, go to work, eat dinner, tv with the dog, sleep” routine. And today I really accomplished that.

Over the weekend, I had come across this really cool dessert place called, “Sweet Churros.” It basically is a homemade churro place that adds different toppings and some ice cream choices. Unfortunately, I couldn’t bring myself to pay for such an expensive cab downtown from my home, so I figured I would wait until I was in the area during the work-week. Even though I felt pretty crummy because it’s been really humid, and I was exhausted after working all day and walking around the shoe store, I forced myself to put “Sweet Churros” into the Uber destination and I just went with it.

The actual place would have been easy to miss if I wasn’t looking for it. I ordered a churro covered in Fruity Pebbles cereal, and had it sitting in a cold cup of vanilla soft serve. I was initally worried that I would be covered in the treat in a matter of seconds once it met the summer sun, but whatever this place is doing is working out perfectly, because I was able to enjoy my food without wearing it.

Day 3 churro.jpeg

 

Even though my trip was successful, something snapped inside of me on my ride home. I got a lump in my throat, and all I wanted was to be on the other side of my apartment door so I could cry my eyes out. I’m not sure if other sick people can relate to this, but sometimes it feels easier to just go along with the status quo instead of reaching certain milestones, because it shouldn’t be a big deal for a 34-year-old to get ice cream on a hot day. I was so grateful to be able to follow-through with my detour, but it also took so much energy out of me that I fell asleep about 30 minutes after I got home.

What kind of life is that?

Anyway, tomorrow is another day. I have some other things contributing to my shift in mood, but I really hope that I’m able to leave that sadness in today’s history and feel a bit more hopeful for a better tomorrow.

Until then.

xoB

Day 3 work clothes

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Day 2 – Summer Feet.

I wasn’t really sure how today would turn out, since all things sound great for about 24 hours. I thought maybe I would wake up this morning and tell myself, “well, that was fun. I’m just going to lay in bed all day instead.”

But I didn’t.

I think it definitely helped that my hair was still looking nice from last night’s shower. I was able to just brush it quickly, and a good chunk of my get-ready process was done.

It was really, really hot in NYC today. It ended up working out well, though, because I had a dress in mind that I wanted to wear, and the weather supported that decision. It was really awesome to grab an article of clothing from the closet that a) still had the tags on it (are you catching the theme with that, yet?) and b) I could actually consider since my legs were smoothly shaved. Many of you might be thinking, “but Becky, it’s the summer – you have to at least keep up on that, don’t you?” And the answer is, “no.” I have blonde hair, so I get away with whatever I can get away with.

With that said, it was also really nice to get a pedicure today without worrying about the nail girl getting a rug burn on her hands. There’s a first time for everything.

Day 2 white pedi

(Don’t mind my summer feet. Sum’er here, sum’er there…).

I think I’m going to have to consider buying some more cute things to wear over the next few weeks, since nothing in my closet seems to be safe from being pulled out and worn. And honestly, one of the things that has kept me excited about continuing on this journey is being able to wear new things – feeling the joy of running around in an outfit that hasn’t seen the light of day.

An observation that I had today that’s pretty similar to yesterday is that I was noticed for the clothes I had on. I went to the pharmacy, which is a very normal trip for me, but today, the salespeople paid attention to me differently. I was barely inside the sliding glass doors before some girl yelled across the aisle, “I love your dress!” When I picked up my Rx, the pharmacist gave me a look that sort of read like, “who are you, and what have you done with the lump of a person I normally see here?” But the best and most blatant reaction to my dress (boobs) happened when I was at the checkout spot. As the guy was ringing up my items, some other employee a few registers down took some people out trying to get to my lane, just to jump in front of my cashier to ask if I had a store rewards card. Swiping my card took $10 off the total, and then I blinked and another $15 came off the total after jumping jack flash waived some paper in front of the scan gun. “This is another coupon for you today.”

OK, so a few things. First of all, I feel like I’m playing out some forgotten scene from Beauty and Beast, because I’ve been in that Walgreens nothing short of 896 times in the last 7 years, and no one has ever offered me a discount that I didn’t ask for. In fact, half the time they can’t even get their shit straight enough to give me the discount that I actually inquire about.

Next – society clearly favors the beautiful (again: boobs).

I have some anxiety bringing this plan into the work-week, because I have a lot less control over my time since I spent the majority of my day on someone else’s clock. Mornings are really hard for me, and I usually feel accomplished if I get to my job with something other than pajamas on. To consider being “done-up” for the next 3 weeks feels daunting to say the least.

But maybe – just maybe – I’ll surprise myself.

xoB

Day 2 Blue Dress

 

Day 1 – Empower

As part of my 21-Day challenge to be more presentable in public, I will be documenting things that I’ve noticed that I might not have experienced if I hadn’t embarked on this journey.

Since I normally spend my weekends lounging around and recovering from the work-week, it took a lot of mental prompting to get me out of bed and into the shower. I slept late, watched some movies, and enjoyed some downtime with the dog.

But since I really care about moving forward with my plan, I pushed myself to follow-through, even if it was with a late start, because any progress is better than none.

I get a lot of anxiety at this point about bathing. I don’t even think it’s the actual act that scares me as much of the discomfort I feel just IMAGINING the act. When you are physically disabled, everyday things can feel really overwhelming. Taking off clothes, stepping over the side of the bathtub, turning on the water, lathering up the shampoo, rise, applying the conditioner. Shave, soap up, wash face, rinse conditioner. And that’s only the beginning. After that comes brushing through a full head of hair, eventually blowdrying, drying off, getting dressed, and if you’re feeling like a real champion – makeup.

I always really feel great after taking a nice long shower, and I have had a bench in the tub for the last 10 years (which is a total game-changer if you have issues standing). And while I initally thought, “OK, I can do this!”, I woke up this morning completely zonked after sleeping through a post-cleansing coma. This is also what contributes to me being hesitant to committing to plans, because before I even get to the event, I need to take a nap.

I knew that I wanted to go out into the world since my hair and makeup were done, so I put on a flowy (read: comfy) tiered, off-the-shoulder dress from Express that I bought to wear to my mother’s graduation in May. I loved it when I wore it back then, and honestly, if I hadn’t worn it yesterday, I might have watched it sit in my closet in a quasi-retirement until it didn’t fit me anymore or my style changed.

At about 8pm, I hopped in an Uber and went over to DSW. Because my feet are deformed, shoe shopping is usually a giant pain in the ass. But I figured it was late, and the store would likely be pretty empty, and it always feels better trying things on when you don’t NEED to find something for an event. I always seem to get luckier in that scenario.

As I mentioned in my original post about this challenge, there is a component for me that is interested in seeing if it’ll affect anything for me socially. But what I didn’t consider was that attraction doesn’t discriminate, and I ended up winning the attention from a woman who I can only guess was on a day-pass from the looney bin. Her process of introducing herself included asking me if I knew my dress was so long, and when I said, “yes…”, she said, “of course I know you know, but it’s dragging behind you and I want to know why.”

“Because I’m short. My dress is long and on the ground because I’m short.”

I don’t know if she expected me to melt into a ball of insecure tears or if she was hoping to get a lawsuit out of me after punching her in the face, but I sort of regret not resorting to one of those options, because my kindness and patience with her bizarre character resulted in her spending the next 20 minutes following me around and asking me to give her advice on the boots she was trying on.

After walking around for about an hour and a half, I left with a fun new pair of Keds (which are cool again, apparently, and at “cool again” prices…) that have the word “Empower” printed on top in rainbow colors. It’s a little particular for my taste, but given that I think I’m going to need an extra little shove each day to accomplish my 3-week goal, I thought that it wouldn’t hurt if my shoes were cheering me on.

Day 1 - Empower shoes

On my ride home, I was thinking about what, if anything, felt different on day 1. The first thing that came to mind was being able to smell Central Park, even if it was from a cab. The temperatures have been a little more mild recently, and though it was still kind of humid out, it was nice to drive home with all of the windows down, with my newly cleaned hair blowing in the wind.

It also occurred to me that I had written a blog post for the first time in about 9 months, had made use of my new desk that I’ve stocked with all of my nicely organized makeup, and noticed that my “comfy” clothes felt more comfortable than ever, when changing out of the dress I had been wearing all evening.

I have always felt that contrast is an important part of life. It’s why I believe I can tell when someone in the chronic illness community online isn’t being authentic about their experience, because anyone who has truly suffered the way that many us have, would also be able to appreciate much more than what I see being posted about each day.

To me, people who are not able to be grateful for basic things have not experienced pain or loss to the extent that makes them aware of how lucky they are when terrible things aren’t happening.

And with that, on to day 2!

xoBDay 1 Fkowy Dress

21-Day “Beauty-Binge”

I haven’t felt like myself for a very long time. In fact, I’m not even sure anymore of what my “self” looks like at it’s core. There are pieces of me that have stayed intact because they are so crucial to my existence, like compassion and intrigue, but the rest just sort of feels like it’s been on auto-pilot.

A lot about being a sick person is doing things every day that you don’t physically and mentally feel like doing. It’s getting out of bed, bathing, contributing to society in some way (going to work or school, for example…), and it’s checking off items on a list that prevent you from failing at life completely. Do laundry. Pay rent. Feed the dog. Feed yourself. Even typing this out feels monotonous. And what I’ve learned is that you can go into a downward spiral quickly if you aren’t aware of how unintentional your habits have become.

When you are chronically ill, and these things that you don’t feel like doing still have to be done, there is a lot of energy that gets used just accomplishing these and other basic tasks. I have always had a theory that it takes more energy to do the things we don’t want to/feel like doing than things we want to do, because we also have to compensate for the lack of motivation that exists when a general interest or desire isn’t present to push you. So when we’re just getting by, and we’re trying to make it through each day, what happens to all of the expendible activities that we simply don’t have the energy to accomplish?

What happens to our joy?

It’s sad, but because I live alone in NYC, I very much depend on going to work each day so I can support myself. I don’t think that this is a different fact than other people who have to work to survive, but other people aren’t completely depleted just getting ready in the morning. For me, there are many days when I have to pick between going to work and taking a shower. Other people might argue that both are non-negotiable, but if you know that after you’ve hit a certain wall that nothing else will be possible, you have to prioritize the things that will immediately cause big problems, and that might come at the expense of things that seem unfathomable to put off.

So then as your health declines, you start to become a robot in a sense. You start to feel like everything is a race against time, trying to get the bare minimum done before your body closes shop for the day. And when you’re living in that mentality – survival mode or bust – it feels like anything “off the list” so to speak, feels like a luxury. It starts to feel like the things that you once loved are very much out of reach, as long as you want to stay afloat in the areas that truly require your attention.

But that’s no way to live your life, when there’s no “living” involved.

I have always had a pretty extreme personality. I’m usually either completely invested in something or it practically doesn’t exist. So when I started to go down this path of maximizing my time, other things were sacrificed that I couldn’t have anticipated in the very beginning. You figure that small things can be skipped, but small things add up.

So with that said, I decided I’m going to spend the next 3 weeks tackling a small piece of the puzzle. I’ve heard many times through the years that it takes 21 days to make or break a habit, so I will be spending that many days assigning some time to doing my hair, doing my makeup, and putting together an outfit that makes me excited to walk outside my front door. I want to feel put together. I want to feel approachable. I want to feel worthy of being seen.

At first pass, it might seem that this is a superficial challenge that I have set my eyes on. However, I think there is a lot to be said for how we present ourselves to others. I don’t think that a full face or big hair is the reason others should value us, but if we aren’t putting any effort into how we look every day, it could be perceived by others that we don’t value ourselves. And if we send the message that we don’t value ourselves, how can we expect others to think we have value?

This is basically a social experiment.

We have clothes in our closet that we reserve for special occasions – I would like each day in the coming weeks to be special. I also am interested to see if my committment to something so basic trickles into other aspects of my life – will I be encouraged to try new things, or be more social, or get to work on time, simply because looking nice on the outside makes me feel better on the inside?

I will be journaling about my experience and will be tracking things that are seemingly unrelated (i.e. my weight) – because my gut tells me that deciding to make my appearance a priority will open up new doors an opportunities for me, even if they are only benefits that I am able to see.

This mission that I am about to embark on is not about other people. It’s not about being attractive, and it’s not about pretending like I’m not sick every day.  In a way, it might remind others that even though I am sick every day, I’m worth spending time on. With this journey, my goals are pretty simple. I intend to live with intention. I want to find purpose on purpose. And I want to teach myself and others that I deserve to be loved by first loving myself.

Ultimately, there is absolutely nothing that I can lose by doing this. All I know is that I have no idea what else I’m supposed to do, other than to fake it until I make it. It’s a notion that I’ve tried in the past and in my recollection, has had a pretty high success rate. Also, I think it’s important to mention that for me, even though it will be physically daunting to accomplish this level of vanity, this is something that I’m actually interested in doing. I think it’s fun to play with makeup. I love my hair. And I also appreciate fashion. The only thing that I have left to do at this point is to do these things that I actually enjoy.

If other people are inspired by this and are feeling a bit lost in life like me, I hope it’s also understood that this is MY version of a “beauty binge.” I am not trying to perpetuate the idea that women are only beautiful if we have makeup on or that we have to be an “enhanced” version of ourselves to be valued in society. Beauty to someone else might mean drinking a ton of water to promote glowy skin, or it might mean sleeping more to prevent bags under the eyes. I only promote that we each determine what feeling beatiful looks like for each of us, and that we don’t discount the impact that ignoring that feeling has on other areas of our life.

So here goes, my dear friends.

All my best,

xoB

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Doctor-Shopping or Patient Advocacy?

One of the questions that I have been asked the most recently is “What’s the difference between “doctor-shopping” and just advocating for yourself to get diagnosed properly?” I think the question comes in a time where accounts like mine exist; people who previously hid behind “raising awareness” and “finding one’s voice” are now being seen for what they’re truly doing: shopping for a diagnosis and manipulating the medical system (and the chronically ill community) in the process.

Before going any further, it probably makes sense to define what each of these terms means on a basic level. When someone is advocating for him or her self, the priority is getting diagnosed, period. The light at the end of the tunnel should answer the question, “Why don’t I feel well?” Someone who is pushing to get answers, because they believe something is wrong medically, isn’t concerned about that diagnosis being something specific, they just want to feel better.

However, when someone is “doctor-shopping”, they have an agenda. This person doesn’t respect the process of getting diagnosed, and either hasn’t found a doctor that they can trust enough to go through that process with, or they don’t have any intentions of actually putting in the work as a patient to get clear answers.

“But Becky? What do you mean as a patient I have to ‘put in work?”

Yes, you read that correctly. One of the biggest issues I’ve noticed in the online chronically ill community in the last few years is that there is a level of entitlement there that will only ever do one thing: prevent us from getting the answers we need to get help. This entitlement is why so many people are passive-aggressive towards those without chronic illness, why the anger towards clinicians is beyond reason, and why so many people are getting unnecessary medical treatments for conditions that could often be managed with slight modifications to lifestyle (diet, exercise, etc.).

But here’s the thing – as patients, as people, as creatures, however you view yourself, we have a responsibility to meet any scenario halfway. If we’re hungry, we can’t expect to magically be fed, we either need to cook or order delivery. If we need a haircut, we can’t expect our hair to magically get shorter, we either need to go to a salon or get a pair of scissors. And if we are sick, we can’t expect to magically be cured, we have to visit the doctor and follow his/her advice.

When patients start to feel entitled to not having to do the bare minimum required to manage one’s health, you start to see this BS narrative develop about how what they have is “more extreme” or “more rare”, or that #doctorsaredickheads. You start to see the Amazon lists filled with “nice to haves” vs. “can’t survive withouts” develop. And you start to see people believing that an Instagram meme will diagnose them better than the doctor that spent 57 years in medical school.

I mean, let’s talk about that for a minute. I know what it’s like to be short, because I’m short. I don’t, however, know what it’s like to be a doctor, because I’m not one. I’ve been sick forever and I have a lot of experience and exposure to resources that’ll help me, but I’d never be stupid enough to get in my own way when it comes to my health.

And yes, thinking I’m smarter than all doctors would get in my own way.

To make things a little easier to process, I decided to make a quick section that identifies the differences between someone who’s authentically trying to get better and someone who’s desperate to get a port.

Advocating for one’s self: desperate to feel better, will do whatever it takes to find a good doctor, complies with medical advice, voices concerns in a respectful way, tries out different treatments (even if it’s outside the box). Knows to look for a new doctor if current doctor is dismissive of symptoms or gives a throw-away dx (like Fibromyalgia or depression). Overall, the interest is to get better.

Doctor – shopping: Has an agenda. Believes after looking at a few memes or threads on social media that they have (fill in the blank) diagnosis, and won’t stop until they find a doctor who will give them that specific diagnosis. Doesn’t trust clinicians, won’t try basic recommendations to better health (i.e.: eat better, sleep, exercise, etc.). Has seen 10 doctors who gives same medical advice, but still not satisfied. Over-dramatizes symptoms to get more invasive treatments, etc. A huge red flag is when someone seeks out a boutique doctor, which many believe more quickly offer diagnoses that aren’t appropriate because the patient is paying them to do so.

I know it’s probably hard for people to see themselves when they are in situations, but basically, just don’t be full of shit. Be honest with yourself. Ask yourself why you aren’t satisfied with the medical advice you’ve received. Ask yourself why you want the diagnosis that “everyone” else has on social media. Is there a deeper issue? Are you seeking attention?

Being sick sucks and it’s hard. But some things take time and you have to be patient.

xoB

 

 

#sickpeopledoingthings™

January 12th, 2018, was a really normal day: wake up, go to work, look at the clock, panic, hail a cab, apply excessive pressure to the driver to fly over NYC skyscrapers to get me to my appointment on time, check-in (late) for said appointment, get vitals taken, and wait.

And wait.

Waiting is something that a lot of sick people do. We wait for test results, for medicine to kick in, for prescriptions to be ready, for someone to help us with whatever we need in that moment, and as in my case that day: we wait for the doctor to come into the exam room.

And while I waited under the familiar hum of the offensively bright overhead lights, intrigued by the blue accent wall in an otherwise cookie-cutter clinical quarantine, I decided to kick my feet up, since I already felt at home.

I was thinking about my job, about what time I’d be able to get back to my office, and out of the corner of my eye, I saw my shoes, elevated and crossed, one over the other: rose-gold pointy-toe work flats that I was proud to have found for $18 on Amazon.com, and it occurred to me: waiting is not the only thing sick people do.

Sick people have careers. Sick people get manicures. Sick people volunteer. Sick people walk their dogs. Sick people dance around the kitchen while making dinner. Sick people go to school. Sick people play music. Sick people clean. Sick people get married and have kids. Sick people travel. Sick people participate in sports. Sick people go to the movies. Sick people read books. Sick people WRITE books. Sick people overcome whatever they need to. I am sick people.

I am a sick person doing things.

As I’ve talked about in length on my Instagram account, it’s truly bizarre for me to see how the current chronically ill community behaves, with the introduction of social media. When I was a kid (it’s official, save me a seat at the buffet, I’ll bring my senior citizen discount…), technology was more or less used for the shit it was intended for. A phone’s purpose was to call people, computers were for typing up reports in a word processor, and televisions aired 22 episodes of a program that was properly spaced out throughout a season, which went from early September all the way through the end of May.

Summers were meant for playing outside. Imagine that.

With the undeniable growth of technology, we’ve gained a lot in the way of efficiency and access. But we’ve lost much of what makes living on this planet important and tolerable: the value of hard work, human interaction, and being able to communicate effectively altogether.

So it really shouldn’t be surprising to me that when I hop online and I view social media accounts for the “chronically ill”, I’m met with immaturity, co-dependence, competition, and frankly, a false representation of the community I know and am a part of.

Chronically ill people aren’t whiny. We aren’t passive-aggressive or malicious. We aren’t hyperbolic when we report symptoms, and actually, we tend to downplay and hide what we have going on, just to avoid being a burden. We are tough, and resilient, and we have goals that we’ll meet or die trying to meet. We don’t make excuses, but we also don’t glamorize what being sick is really like by overcompensating with peace-signs or a thumbs-up or muscle making from our hospital beds. We are a healthy balance of graceful and assertive; we know how to appreciate what we have because we’ve had less, and we know how to speak up because we’ve been invisible.

We can handle our own.

We might have moments of weakness, we might break down, we might cry, but in private. We know what it’s like to not be taken seriously, or worse, to be disregarded even when our full picture is understood. We don’t want to jeopardize that, and we won’t.

#sickpeopledoingthings is for the old school and new school, alike. It’s for those who learned how to live life before having to share it with people they don’t know, and it’s for those who have fallen down the rabbit hole of feeling like their illness is only real if they take pictures of it.

#sickpeopledoingthings is about highlighting us not being sick at all – not in a shameful way, but in a way that helps people become clear about the fact that, without shoving it down anyone’s throat overtly, we matter, and we are a force to be reckoned with.

#sickpeopledoingthings represents that while we are doing all of the things that the non-chronically ill people do, we are also superheroes who lead a double life. We are managing pain, coordinating our medical care, and mentally processing an extra layer of heavy shit that those without illness don’t have to consider. Except we aren’t Clark Kent in one place and Superman in another – we. are. both. all. the. time. We don’t get to choose when we want to be one or the other. It’s the thing that makes us suffer, but more importantly… it’s the thing that makes us great.

#sickpeopledoingthings is about the beauty that comes from those around us not needing to know of our dual identities. No one knew about Clark Kent’s alter ego, but it didn’t stop him from moving faster than a speeding bullet, did it? People getting a medical play-by-play doesn’t make our illness more real, and people not believing we are sick doesn’t make it less real. If anyone has a problem with that, that’s THEIR shit, that’s not OUR shit.

#sickpeopledingthings was created so we can start feeling motivated and empowered to live the lives we want to live. That doesn’t mean that we’ll do it the way it’s commonly done, and it doesn’t mean we won’t have to make modifications along the way. What it DOES mean, is that our strength will come from pushing past our illness, and not losing who we are in the process of dwelling on it.

A lot of people think that being inspirational happens when you simply intend to inspire, but that’s not even close. There’s nothing special about preaching to the choir. People are most inspired when they see others doing things that bring them joy, and doing it in the face of adversity. No one wants to hear us talking about the things we want to do, they want us to see us get up and do the things we want to do. They want to see that there’s hope for them in us.

#sickpeopledoingthings is not about posting about another visit to the clinic, or another blood draw, or another sob story about how being sick is holding us down. It’s also not about warrior poses and “raising awareness” and all of the ridiculous self-indulgent and misguided behavior that has infiltrated the internet. It’s about absolutely none of that, while being something in between.

We need to stop trying to inspire, and start being inspirational.

Go outside. Write in a journal. Make time for the people you love. Work hard. Earn the things you have. Explore your passions. Experience new things. Protect the things you’re grateful for. Draw. Help others.

Help yourself.

In the last 9 months, #sickpeopledoingthings has been used more than 1000 times, which means we now have an active record of the things we CAN do, not the things we can’t. Instead of freaking out the newly-diagnosed with over-the-top memes and selfies that scare them into being bedridden shut-ins, let’s use #sickpeopledoingthings as a roadmap of options to the dream(s) of their choosing.

Get that virtual degree. Start that business from your bed. Organize your closet when you can’t sleep at night. Rent a scooter on vacation. Start dictating that first novel. Get comfy with online shopping.

Be creative.

Chronic illness shouldn’t prevent you from thinking that your life matters or that it will amount to anything important. If you want to be more than your illness, take the steps necessary to say that proudly. If you want something bad enough, figure out a way to make it work for YOU. Be a sick person doing things.

Everybody has shit. This just happens to be ours.

xoB

@chronicmotivation

“With Passion.”

#sickpeopledoingthings est. 1/12/2018 by Becky aka @chronicmotivation

Working while chronically ill.

I’ve been sitting here for the last hour trying to figure out a title that best represents how I feel about what I’m about to write, and when I stumbled upon the recent Starbucks arrest of two black men, and how people express experiencing  the discrimination they call, “shopping while black”, I knew I had found a winner.

I don’t write much, anymore. In fact, I don’t officially write anything substantial unless I’m emotionally thrown into doing so. My best work comes from being deeply sad, angry, or hurt in general, and most of it I’m able to vent out on my Instagram page in the 2,200 character limit under each post.

This time won’t be the case.

In addition to feeling like I have more than just a little to say, I think the topic of being sick in the workplace is something that deserves more attention than a drive-by mention. I find this incredibly difficult to articulate most of the time, because I think every person’s situation is dramatically different, and when it comes to health, almost nothing is predictable. And even when it is, how people handle it varies, drastically.

I am someone who grew up looking at my illness as another appendage. I’ve never wanted to stand out because of it; I’ve never wanted pity or special treatment. All I ever wanted, really, was to be given the same opportunities as the person or people next to me who apply the amount of effort that I do.

Which happens to be a lot.

I’m not even talking about the extra effort it takes to be sick AND be a respected employee. I’m not counting the energy it takes me to shower, the money I spend on cabs, or the emotional stress that comes with not ever being able to turn my illness off. I am simply comparing oranges to oranges – which, in the most basic sense, to me, means: does the work get done?

Unfortunately, I can safely say in the adult season of having my career, which is nearly rounding 11 years, my productivity, quality of work, or commitment to my employer have never been what has been the focus of evalution. You can be smarter, faster, more resourceful, personable, and take initiative, but if you have to also juggle regular medical appointments, can’t physically be present for an exact schedule, or are limited to wearing flats instead of “power heels” because sneakers are the only shoes you are actually able to walk in, you will start to notice the trend of training others to move on while you stay exactly where you are.

At this point, I feel it’s necessary to reiterate and mention a few things to provide clarity on what I do not expect from an employer. As mentioned above: I don’t expect special treatment. I don’t expect to be handed an easier path. And I don’t expect it to be acceptable if I can’t complete the tasks surrounding the role I’m hired to do.

With that said, making reasonable accommodations for physically disabled employees is not special treatment. It’s treatment, period. I have as much control over my handicap as someone has over his or her natural hair color.

Next, making reasonable accommodations for physically disabled employees is not an “easier path.” It’s a path. Would an accommodation I receive be “easier” for those without my physical disability? Sure. But it would also be “easier” if I didn’t need to get chemo infusions once a month to do what other people can do just by waking up and wanting to.

Which brings me to the last point. Being chronically ill has never been a choice for me. Has it made me way more badass? Yes. But it wasn’t something I decided to try out for fun. One of the largest problems I face in the workplace is that being physically limited is often translated as “less motivated.” Working in healthcare operations means that you have to be “on” during specific hours, and prepared for when the shit hits the fan. I care more about my career than I do most things, so I have prided myself in learning the intricacies of my profession, mostly thanks to being a patient, so I can plan and coordinate my medical care around making sure my job gets done.

And my job gets DONE.

It shouldn’t matter if I’m creative about how it gets done; the focus should be on the fact that it does. And well. Every time. I empower staff to be strong and independent, so I can trust them to make important decisions, if necessary, in my absence. I build solid relationships with every walk of life in the workplace, so I can expedite issues quickly and without hassle. I make sure that my work is thoughtful and complete, and I do whatever I need to do to make that happen, so the final product is valuable and respected, to a fault. I function through pain meds; I check technology issues in the middle of the night; I have taken work calls while Remicade pumps through my veins on Saturday mornings.

But regardless of all of this, we live in a society that dehumanizes the process of making a living. Don’t get me wrong – I am someone who relies heavily on routine and structure. However, why the hell does it matter if I get to work at 9 or 9:20 or even 11:20, if I am responsive when emails come my way, if I am savvy enough to do my job from a cab (or my bed, for that matter), or if I am blowing past deadlines and submitting content that exemplifies my competence? Why don’t we understand, sick or not, that these are the reasons Americans are so miserable? Life doesn’t happen when we want it to – it just happens. So how can we expect anyone, especially sick people, to be able to work with that?

But don’t forget – if sick people don’t work and submit to the “benefit” (heavily quoted, by the way…) of being on disability, it means they are lazy and not contributing to society, right?

…Right?

So how do we win? I put myself through undergrad with a dual major and minor, and immediately moved out on my own, started working full-time a week later, and began grad school right after that. I completed my 3-year master’s program in 2 years, while working full time, which frankly, is a feat before even considering the fact that I have a debilitating, degenerative, aggressive joint disease. I’m not asking for a hand-out because I had to bust my ass to do it as a sick person; I’m asking to be seen for my professional qualifications – many and most of which my peers do not possess.

And this is where I get really, really, frustrated. I have never been promoted. I have been reprimanded and disciplined for lateness and attendance “issues”, which is really interesting since my work has never suffered. Also, I haven’t taken a vacation in four years. Yes, you read that correctly. I have used all of my sick and vacation time for one thing, and one thing alone: to manage my health. And I’m not talking about unexcused absences, even. It has been years since I’ve called out of work for any kind of illness, which is absurd, since I wake up sick every. single. day. But since I don’t spend my vacation days at the beach, the perception is that I am worth less to the overall organization.

I’m not naive. I understand that people abuse sick and FMLA benefits all day every day. But as a manager of staff, those people are easily spotted from miles away. They call out every time it snows, or rains, or has either of the two in the forecast. Or better yet, they call out every time it’s sunny also, and come in with a nice tan when they come back to work. These are also people who simply say, “I can’t” instead of “I’ll figure it out.” Don’t you think it would be more beneficial for me to get my infusion treatments on a weekday, so I can be better by the weekend? The only reason I do them on Saturdays is to preserve my time at work.

In the four years I’ve been at my current job, I’ve had different managers and have been handled differently between the two. I’m very grateful, because the role I currently have is much more removed from the operation than it had previously been. I have also had the flexibility to work my medical appointments into my day and work from home when exceptions in my health arise. However, I can’t help but feel that the perception from my employer is that these accommodations that I need to function, no, SURVIVE, are acceptable substitutions for being promoted and considered for growth opportunities.

A year ago, I was asked to move into my current role, and I declined. A few months later, I was told I no longer had a choice. I was told it wasn’t punitive.

It felt punitive.

As I do with everything else I have to deal with in my life, I took this opportunity as a challenge. I stepped up. My entire day-to-day changed, along with the expectations of how I would function as an employee. I had never done project work before, and it’s not the job I was hired for. Not even close. But I did it, and with the same enthusiasm I’ve done jobs I’ve actually wanted.

However, all of my peers have moved on (read: “up”) within a year or two of their hire. When discussing it with my manager (who I greatly respect and value, and has worked with me more than any other manager before him has), he reiterated something he says to me often, which is that the “right” opportunity hasn’t presented itself to me yet. I find that really hard to accept, when my feeling is that the opportunity DID present itself, about a year ago, when the hospital I work for needed a project manager. They didn’t recruit for it; they didn’t create a new position and use it as a growth opportunity for someone who had worked hard for it; they laterally moved me and told me I had to learn a whole new set of skills.

The thing that made me most emotional and discouraged about the dialogue surrounding my concern was that there was an expectation that I be grateful for my accommodations (and of course I am – I’ve had horrible managers who haven’t treated me half as well) – but more than that: that my employer’s extension of offering me the things I NEED should satiate my desire to be offered the things I’ve EARNED.

And this has been a recurring theme in my life in so many places. When you have a special need that “easier” people don’t require – whether it’s physical or emotional – we are led to believe that once that need is met, we shouldn’t ask for anything more.

I’ll admit, I’ve been content with this notion for a really long time, mostly because I know what it’s like to suffer. I know what it’s like to feel abandoned by a mentally ill parent; I know what it’s like to be in a marriage that didn’t have passion; I know what it’s like to feel like a slacker, sneaking in and out of work, hoping that I don’t get caught because my meds didn’t kick in fast enough to punch-in on time.

“Be grateful, Beck, that you had mother figures in your life that stepped up when your mom stepped out.” “Be grateful, Babe, that you have passion, even if it doesn’t come with love.” “Be grateful, Rebecca, that you haven’t gotten fired for the issues surrounding your health, even if you do everything in your power to maintain your job performance.”

But if being sick hasn’t stopped me from working towards the life I want, why should it stop me from thinking it’s the life I deserve?

I don’t want to be victimized, nor do I want to be seen as a martyr. I have always owned my health’s circumstance, far more than most people think is natural. But as I’ve gotten older and I’m spinning around the same hamster wheel, it’s becoming intolerable to exist while I watch my peers travel, pay off debts, buy homes, and prepare for a comfortable retirement.

Maybe we should work on the language in the workplace and the stigma surrounding that language, as it relates to people with certain God-given limitations. Why is what I require a “special” need? Why isn’t it just a need? Why is what I require a reasonable “accommodation” and not just REASONABLE? What if everyone who was hired was just looked at as people, and they had to list their needs on paper before starting on day 1, right before they get their ID photo and a locker assigment? A clinician’s list might include a lab coat, a mom’s list might include a shift that mirrored her kids’ school hours, and a physically disabled person’s list might include having a seat near the bathroom.

I’ve never been someone who is overly sensitive about semantics and being politically correct. I’ve always functioned off of the belief that I am a good person at my core, and that intention is everything. But I wonder if putting certain systems in place to “protect” people has actually hurt people worse. I’ve analogized this to not wanting certain medications or diagnoses in my chart, because I know patients are often judged based off of how their medical record reads. It shouldn’t be, but it is. Like anything, there are laws against this kind of discrimination, but it exists.

It sort of feels like a catch 22. Since I’ve always been insanely transparent about my disease and how it affects my day-to-day, it can be used as a weapon against me, intentionally or not. However, my feeling has always been that there is some human component to sharing something that personal, or rather, harder for an employer to be  jerks if they know what I”m going through.

We all have needs.

Being seen past an illness is mine.