chronic illness – Raelee Rowen

Remission Anxiety

I cannot fathom the pursuit of one interest.

My passions and goals are not neatly typed out into steps.
I don’t have one ideal I aspire to.
I won’t be able to reference my childhood fantasies in a future acceptance speech.
I have never focused on one thing long enough to become an expert on it.
I don’t have neat categories. No aesthetic I could be the face of.
There is no single lifestyle I can be the spokes model for.
I don’t have the cutthroat ambition needed to attain some level of greatness.
I don’t have what it takes to reach career or wealth levels that would impress the people around me or the kids I went to school with.
I will not cause any envious chatter in circles of people I don’t know.
But I wanted to.

For a few years I thought acting could be my thing. I felt like it was perfect because each role is different, a new set, a new cast. But I never got far enough into the business to get a taste of that variety. The environment got toxic, and I started making choices that made me dislike myself. My health got in the way of bringing my best work to the stage. Rehearsals went long; the amount of sleep I needed to rejuvenate myself was unattainable. I wasn’t able to create the depths needed in my characters because I wasn’t willing to be any more vulnerable than I already I was. I was never comfortable taking on relationships within a show beyond a G rating – and I didn’t have the drive to find other opportunities that would have let me stay within that comfort zone.

I kept at it while it was easy and felt natural.
Once I was asked to go beyond that, I walked away.
I quit.

I’ve since realized that this happens to me a lot. I quit a lot. And it’s ironic because I consider myself a “Learner.” I love going to school, have you seen my highlighters!? I read so much that I have an instagram dedicated to books. I watch documentaries! But something about “Learner” implies a level of commitment I don’t possess. I tend to present the bare minimum of what I am capable of. I do more than what the average is, but it’s not the best I could do. I am a perfectionist who procrastinates. I let myself down, constantly. But I do not push myself to do better. I don’t know how.

In high school I hardly put effort into my homework. I did some of it the day of or copied things I knew I could do but didn’t want to do. I tested well enough and had enough jive with teachers to get extensions, and those are the only reasons that I managed to graduate with a GPA over 3.0.

I could have done better, I know that.

But I talked myself out of it, almost every time. Home wasn’t a happy place to be, and I was only ever at school or at home. If I had access to it, hadn’t grown up with health issues, or had I not gone to Narcotics Anonymous meetings every Friday for about six years, I am sure I would have gotten into addictive substances. Instead I found that reading a lot and watching movies on Netflix was another way to numb myself and make the days go by faster. For most of middle school my memories look dark and feel heavy. Happier memories are of those moments I remember thinking, “oh good, a second of lightness.”

I think I have inadvertently trained myself to be afraid. I have come to find a sense of comfort in the darkness. I fall into this pattern of working my ass off, only to end up falling off the face of the planet. I rarely feel like I can find a happy medium. I would either be up till midnight for a week straight, working on missing assignments, trying really hard in my classes, eating three meals a day, writing and singing, and keeping my room clean. Then suddenly I would crash. I would stay in bed till noon, eat junk and leave the trash on the floor of my room next to yesterday’s clothes. I would skip class physically and/or mentally.

Senior year I dropped out of my college level science and math classes because I had gotten sick (again), missed two weeks, and was too overwhelmed by all the work waiting for me when I came back. At that point, I didn’t need the classes to graduate, and it was made clear by the attitudes of the people around me that me going to a big university the next year was a non-option.
My confidence was shattered, my motivation was shot. It was November and the cold was creeping in. Instead of letting it take over, I dropped the classes.

I don’t regret that choice, because there was too much happening in all facets of my life in that moment – dropping one of the stressors was imperative and I wasn’t allowed to drop my parents. However, it created a trend I have since been trying to shut down. I have turned my poor health into a crutch. If there was ever anything I couldn’t handle, if I ever get scared or overwhelmed, all I have to do is pull out my platinum health card.

Now, technically, it is a health issue. I have only ever lied about having colds in high school. I do have a weak immune system, and at least two rare diseases. But I think the argument could be made that it is a mental health issue, and not to blame on my physical health.

In lieu of an addiction to drugs or alcohol, I have formed an addiction to being “sick” while also fearing it to the point that I’ve developed an anxiety about it.

The idea of getting severely sick again and having to quit my life again is gut wrenching and terrifying. I did it two years ago. I did it for a lot of my childhood. Having to take a step back from everything I want to accomplish and enter a world where all that is expected of me is to get well and rest – it’s awful. I can’t even feel happy about what I have achieved because once I am sick I fall behind everyone around me. I am no longer considered a player in the game.

It instantly feels like no one expects me to live, only to survive.

But gee… that is delicious when I am healthy and feel like I am failing.

So the second I do get sick, whether it is a cold or a disease decides to relapse, I am riding that Nope Train. I forget to do anything that makes me feel good, only the things that keep me feeling bad. I forget to brush my hair. I forget to put on clean clothes. I don’t read, or take the dog out so I can get a breath of fresh air. I forget to eat real food.

For several days I am 13 again, wrapped up in cozy blankets and watching beautiful movies, lost in a daydream about what I’ll be someday when I’m older and well.

And then when I don’t need the prescriptions anymore or the sniffles ease, I am faced with the realization that – I am older, I am well. That Nope Train has been coming around for 10 years now. This game is no longer new. I can’t keep hiding.

I like to think that every time I reach this point of realization, I get better at battling it.
I come up with new ideas on fighting myself. I get better at putting limits in place:

“OK, this time, I only get to throw a pity party for one extra day after being sick”
“This time I have to write what I am frustrated about”
“This time I have to finish x amount of chores so that I push myself to move around”
“If I stay home, then this time I have to keep up with emails and I have to respond to the texts that friends send”

I am terrified and skeptical, daily.
I am scared in my own skin; I am scared of pushing myself too far, of trying too hard.
I don’t want to fail at something I want. If I get sick, then it wasn’t my fault. I never had a chance! “My health got in the way and I had no choice but to take care of myself!” If I half-ass it then I can always say, I could have done better if I tried harder. But if I give something my everything; if I go after the things that I want and dream and crave, there runs the massive risk of failing at it.

I am so scared of getting into something, and really loving it… only to have to quit.
I simply don’t trust my own remission. And as much as we say that failure is just a stepping stone, it fucking hurts and it’s severely uncomfortable.

Sure, my health doesn’t have to dictate everything in my life.
But in the past it has.
In the past it has stunted me.

Who is to say it won’t happen again?

~Raelee

The original version of this post was sent to The Mighty around 2am about 6 months ago, when I was in the midst of a panic attack and finishing up my associate’s degree. Recently, The Mighty has changed their publishing rules and format. Before only some entries got posted, but recently they have gotten access to a larger server and now are publishing everything. So they’ve gone back and published every previous entry they passed on as well.

As a writer, this does feel like a step back because now its just a free-for-all-social-media. But as a #spoonie, I think this is utterly fantastic because it will not only widen the scope of who publishes their stories, but also widen the scope of the type of stories.

It turns out that another version was also in my drafts here on WordPress, which is what led me to editing it and posting it today. That version was called “This One Has No Answers For You, But Many Questions For Myself.”

You can read the original version here on The Mighty’s website.

To Whom It May Concern,

I write to you wrapped up in the blanket my grandmother knit me, on my patio which I have furnished with my rug that Bree hates, a crate someone left behind at work, and a $10 camping chair I bought at the grocery store. I also have coffee.

This winter was terribly hard for me, as most winters are. I long for the day when I can move my family to a warmer climate, where my bones ache less often, and my mood is predictable. For a month or two I have been trying to get a new job, for as much as I love the bookstore I would like to have money for things besides rent and food. I would also like a job where there is room to grow. I want these things desperately. And that unfulfilled lust for more has not helped my mood in the least. I have also been very preoccupied with a couple other things which you will read about in a moment.

I am writing this letter to you because I have consciously realized some things about myself recently, that I felt necessary to share for a variety of reasons:

Growing up I felt like I was behind everyone else because rarely are we brutally honest about our experiences with each other. (I have a lot of thoughts on this point. I do not have all the time to write about them now, but if I do I will link it here). I felt like I never knew what anyone else was thinking or experiencing. This phenomenon has made me very self-conscious.
While I consider myself a pretty open person it is very hard to admit when I am wrong, or when I am bad at something, especially if I really wanted to be right. This is not a trait unique to me, but I feel like if we talked about it, it would be easier for everyone to cope and grow. (See reason 1). So I am pushing myself to do it because of reason 3;
The best times of my life all have happened during the Summer. Not just because Summer is the best (which, it is), but because it comes around my birthday. I get very introspective around my birthday, and that combined with the warm air and bumble bees creates a sense of urgency to push myself. I am happiest when I am pushing myself. I know this and yet, for 75% of the year, I do not push myself. I hibernate. I don’t like the feeling of hibernating. The pleasure of sinking into your bed looses its magic if you’ve been in bed all day. So this is me pushing myself.

Technically these could be argued to be one big reason, but it’s my letter so I get to do whatever I want.

Here is what I have learned this winter, in no particular order.

I am not a good friend. Now, this is a little more complex than that one sentence, but ultimately what I have learned is that I take so much of my own energy making sure that I am energized and healthy and safe that I have little left to give to anyone else. I use to excuse this behavior, because I have diseases and a partner and a dog. But we have the power to cultivate the lives we want. If we want to have time for our friends, we make time for our friends.
And this is not to say that I don’t love and cherish my friendships, but rather I have realized they are no longer a top priority for me. As soon as I made this realization, I suddenly started to feel much better. We are human, we need and crave connection. But much of the connection I need I get from a select few, and I no longer feel the pressure to collect names to prove I am worth loving. Those in similar life stages, I assume, are going through similar realizations. They have partners, children, careers, dreams. They have things they want to invest time and resources into, and sometimes the friendships they have accumulated no longer are compatible.
- I don’t think this is bad. I think this is natural. But geez, it is UNCOMFORTABLE. We put so much pressure into getting everything right, into always being good. And then add our “cancel culture” into the mix and suddenly you aren’t allowed to change your mind anymore. ITS TOO MUCH PRESSURE. Letting go of good people is just as okay as letting go of toxic people. We all are learning and growing and changing, and forcing friendships is just as awful as forcing romantic relationships. I have so many more thoughts to put into this. I don’t have the right words right now. But ultimately, people value commitment, and if you cannot commit to something just say so. Feelings will be hurt but in time they will find people who can commit to them. And this applies to both romantic and platonic relationships. The world will not end because you decided to walk away.
I don’t digest information as much as I thought I did. I think that this comes from my both my impatient nature and my thirst for more. I read a lot, and I listen to podcasts, and I watch documentaries – but until recently I never noticed that I don’t digest what that information really means.
- A great example of this is my realization that salad can taste amazing. People always said that it can taste good, and I certainly never assumed they were lying. I just felt like I didn’t get it. But recently, I have been eating salad. Like full on CRAVING salad, because I learned how to make it taste good. I learned how to make it a meal. The other day I was itching to get home so I could have salad. Let me share with you my favorite salad right now; I mix two different salads together (of the soft leaf variety; I’m not into bitters or the pokey kind), I added some cooked breaded chicken strips, some avocado, lil baby tomatoes, some chopped almonds, ginger salad dressing, and finished it off – get this: with salt and pepper. WHAT? That’s right friends. Salt and pepper on salad. It’s crazy, turns out that making a salad is literally like making anything else. Did you know you can put salt and pepper on sandwiches? My life has changed.
I am learning to slow down. I have written before about how my anxiety is a racehorse. Generally it feels like everything I do is too fast. I don’t know if I am trying to beat the clock, or if it is because when I was younger I didn’t think I would last long – but god everything is too fast.
- In particular, I have applied this to reading. My relationship with reading is complex. Growing up it was a survival tactic – I would read to escape my trauma and my depression. It was literally the number one reason I kept waking up in the morning. For a while reading was like eating and sleeping – without it I would start to crumble. It was addictive, and a dependency. I was staying up all night to finish a book because putting the book away meant acknowledging life outside the story. Not because the book was any good, but simply because it was better than living.
  Now that I can read for the sake of reading, I have had to teach myself all over again. It becomes all too tempting to fall into another world and forget the one I am in. Especially during these dark winter days. I have been learning how to take my time through books, to really digest what I am reading, and how it applies to my life, or what wisdom it can serve me. I am learning how to read what I need at the time, not just to speed through one book so I can get to the next. If I am happy and I want to stay happy, I read a happy book. If I am struggling and I want to break free of that I read a book that forces me to confront what I am struggling with. If I am sad and I want an excuse to cry I read a sad book. This means that I am currently working through 6 books at once which would previously have upset me. But I am learning to enjoy it.
My surroundings impact my perception. This can be as specific or broad as you like. For me it means that when my kitchen is messy, I treat life messy. I don’t care about how I interact with the world, I don’t smile at strangers, I don’t always think before speaking. When my clothes are clean, I am productive and happier. When my hair was last washed god knows when, I lose motivation to cook dinner for my family. When I have a thought-provoking conversation with a cherished friend, I am energized and optimistic. I have been trying to cultivate the life I want in all facets of my life, but specifically in how I surround myself. Sipping freshly brewed coffee in a clean room with the window wide open and a jar of fresh flowers on the sill instantly becomes the best part of my day. Today is my day off but I still brushed my hair and put on a pair of jeans. True, sweatpants are comfier. But jeans are fairly comfy, and they have that slight itch that keeps me from sitting still in one spot for too long.

I know that I have not been available to you, but as you can see I have been quite busy. My mental health takes up more of my time and that feels shameful, but I am working on it everyday. I will continue working on it forever I think. I am trying to accept that. I am sorry that I have been away. I am trying to come back. As the temperature rises I am shedding my layers and rediscovering who I am and what I want in life (I mean this literally and figuratively. The other day I discovered a freckle that I didn’t know I had).

If you are reading this, you clearly are someone who cares for me and my livelihood and for that I love you. I love you for many other reasons, but especially for being someone who takes time in their day to care for me. That is such a little and magnificent gift.

If you are struggling to find balance and would like some peaceful moments in life, this is your permission slip to take time for yourself. You will never be perfect, neither will I. There simply is no such thing. It is far more important to go about your life with intention and awareness. If you overextend yourself trying to fulfill everyone else in your life, this is your challenge to pause and decide if it’s worth it. This is your opportunity to decide on what you want your priorities to be and not what you think your priorities should be. This is your chance to be selfish, and to not feel ashamed of it.

Someday I will embody my own advice.

Much love to you,
~Raelee

Things that are helping me right now:

Stacey Flowers: She is a Youtuber who talks a lot about mental health, money management, and happiness. I really love her honesty a lot. Her Instagram is great too; every morning she goes live with her “morning show” and talks about being intentional and her journey to living debt free. In the evenings she posts from her gratitude walk, and lists the things she is grateful for. She also taught me how to make yummy spaghetti squash.
I Thought It Was Just Me (But It Isn’t) by Brene Brown. I only have worked my way through the first two chapters because oof, this one is not a comfy read. But I have been thinking about what she talks about and trying to apply the concepts into my own life.
Fresh flowers. Whether you steal them from the cherry blossoms, or grab some cheap carnations from the grocery store, something about fresh flowers just feels so luxurious and they always make me smile. I got a $10 bouquet a couple of weeks ago and I keep carrying them with me as I go around the house. Just make sure you change out the water so they last you a long time.
I am trying to spend less time on social media. My issues with self-image and jealousy don’t get any better if I am spamming myself with “influencers”. However, when I am on I try to look at images that inspire me, like the feed of Kate Nelson of PlasticFreeMermaid. She is an activist and posts really great tutorials and information about the damage of plastic and visits communities all around the world to learn about how plastic impacts their lives. She is firm but never condescending, and her positivity is contagious.

Thoughts At The Suzzallo

The coffee shop is broken up into 11 sections. 4 along the longer sides of the room, 3 down the center, but there are only four actual walls – all other spaces are implied through detailing on the walls and ceiling, and through the furniture placement. There are leather couches that are so big you have to curl up on them to truly get comfortable. There are long tables with wooden chairs, there are benches, there are leather sitting chairs with brass legs, there are giant round coffee tables with that same metal to match. There are little shelves built into the walls that are too shallow to hold anything except a coffee cup if you’re too far from the shiny tables. The ceiling is covered in absorption boards, so the room never gets too loud. Natural lighting floods in through old stained glass windows that have been saved and maintained since the rooms initial occupants. And I’m here in the corner of it, seated on a leather couch, coffee on the shelf. Watching, and listening. But I’m not allowing myself to really settle in. Because I don’t really belong here. Not yet.

In a way, it’s sad that we have such a tendency to yearn for lives we do not lead. It’s sad how desperately we can wish for a chance to do over what choices we have made, want chances we didn’t take. How far we can fall into this mixture of envy and remorse.

When I was younger, despite getting sick as often as I was, I assumed my life would look like everyone else’s. I had followed the rules in terms of what teenagers should and shouldn’t do. I assumed that I would get asked to prom, I assumed that I would stop having health problems and I would go to a big school, because I had mostly good grades. I would be there for 4 years and make everlasting friendships. I would take that degree on to a big adult job, and visit bars for the first time. I would travel with a friend or two around Europe and maybe meet someone at work or at a friends barbeque, and we would date and maybe get married. We’d get a cute house and raise a kid or two. That was what they told us would happen. That’s what they said was expected of us. And for the most part I was ok with that. A large part of me really wanted to be an actor, but if this was my fallback, then alright, I was game.

But that’s not what happened.

And most of the time, it’s fine with me how things turned out. I have enough things in my life to be grateful for, I could probably fill Mary Poppins’ carpet bag. But every once in a while, I get nipped by the regret bug and all the sudden I am bursting with What If’s and Why Not Me’s and it can feel completely overwhelming. I daydream about the life I could have had, and the people I could have met, and the world that could have been at my fingertips. And I get so focused on all that I can’t do that I find myself lying. I suddenly feel like I can’t do anything to fix the situation that I am in. I can’t do anything to even get close to that world I missed out on. I play the blame game. It was because my parents didn’t do point A, point B, point C. It’s because my friends in high school weren’t supportive. It was my depression’s fault. It was my doctors who took too long. It was society.

The Suzzallo library at the University of Washington is an architectural masterpiece. Every inch of it feels like it shouldn’t exist in America, and it certainly shouldn’t be allowed for daily casual use. When I was in high school, dreaming of getting into the big school – I pictured this building. I pictured walking across the big brick courtyard in the rain, ducking in, and spending my in-between-class-time getting distracted from my homework because of the gorgeous room I was in. I was meant to do a interior design study on the building a few years back but had been unable to get a ride out to the campus, and instead could only look at photos on the internet. Even after I had learned the bus route and visited the shopping district next to the school often, I wouldn’t let myself go inside. Not until this year did I finally let myself walk across that big red brick courtyard, into the doors, up the stone staircase. Until then, the building was kept off limits to myself. It was going to be my reward for getting in. But it’s been 4 years since I’ve graduated high school, and the first day of classes doesn’t look any closer than it did then.

For a short while I was distracted with the prospect of acting. They said I was good. They said if I applied myself and worked hard that I would be successful and so I did. But I was surrounded by toxicity. The hours were disastrous and tiring. The extra social work was duplicitous and fake. There was constantly drama and broken hearts and chaos. I was not thriving. I was drowning. And even once I left, I would get sick every so often, which would deter my focus on school. And even now, I haven’t managed to take more than one class while working full time, so I easily have another year before I can even transfer my credits over to a new school.

This was the life I so desperately wanted. But I didn’t have the mindset to work my ass off so it could be mine, not until I realized what I missed out on. I didn’t have the focus or mental health until years after my own imaginary deadline. And that is heartbreaking for me to come to face with.

But today I had a doctor’s appointment nearby, and so I decided that I would go early, and work on my homework in that big beautiful cafe attached to the library. Despite the heartache it ensues. To remind myself what I am working towards. But also to remind myself, that it’s just a room. It’s full of other students just like me, who have unknown dramas in their own lives. Who might feel just as held back as I do. There is nothing wrong with working towards this world and wanting to be a part of it, but it’s also ok to enjoy a taste of it now and curl up into that leather couch. I am not here to pretend I am one of them or to practice for the real thing.

I have just as much of a right to be here as they do.

~Raelee

A Skinny Bitch Bitches About Being Skinny.

(((This entire post is about weight. I talk about disorders, and invasive thoughts, and societal expectations. It is not researched or supported, this is what we call an opinion piece. This is all about me, and it is frankly written. If you struggle with weight, or have in the past, don’t push yourself to read this if you think you can’t. Take care of yourself first bb.)))

My disease causes my weight to fluctuate when its active, but my issues with weight are nothing new. I’ve always been too small, for my age, for my height, for my family, compared to my friends, compared to the little kids. My mom tells a story of how my preschool teachers called Child Protective Services because they were worried I wasn’t getting fed at home. I’ve always been too, damn, small.

We presently live in a society where media tells us that it is a desirable thing to be small. My own community pushes against this, and while the logical-compassionate-Raelee understands why; Insecure-about-her-weight-Raelee is struggling.

I think that since there are people who fit into the “Standard for Beauty” without trying, we assume that they get off in life easier and therefore they get through it easily. Certainly I’ve rarely been made to feel that I am a monster by the media, and I can usually find things in my size, and strangers don’t stare at me rudely. But Society isn’t the only voice we interact with on the daily. I still have the voice nagging and yelling and being mean in the back of my head, and the strangers telling me to fix myself are usually saying I need to eat more. And usually it’s not strangers, its family and friends. And it starts out fine, and they always mean well… don’t we all?

I used to make myself throw up in high school. I had a special stirring stick that I found in our kitchen. It’s from my Hawaiian Poodle party I had when I was 9 or 10. Its blue with a green palm tree as a little handle. I’ve also used a toothbrush when in a sitch. Or my fingers. Usually after a fight with my parents, or after a really shitty day at school. Or when I was feeling lonely. Or because I looked plump that day.

Now I won’t pretend that this was a more serious issue than it was, let’s not exaggerate. It happened less than 30 times the four years I was in high school, and maybe 5 more times since I graduated. I was paranoid about it ruining my teeth so it was always a last resort among my supposed options. When it happens now it’s because I ate something that upset my stomach and throwing up is the fastest way to be done. I did start getting help for it but I realized that my high school counselors didn’t really listen when I was talking. If you are struggling with an eating disorder, please seek professional help. You are so much more than what your brain keeps saying, and getting help will be a lot easier than fighting on your own.

Yes I am small, and I take immense pleasure in fitting into small spaces for people. But I also can’t see how small I am. I can sometimes see it when my friends and I are in swimsuits, but even then I have a hard time not inflating my perception. Being thin means wearing shorts from the kids section and thinking it’s hysterical, and then wearing 0 size jeans and feeling guilty and dirty. It’s a constant roller coaster of omg im so thin just like a model, to, all my friends have beautiful sexy curves and I am a skeleton in skin and then when you add in the insecurity that a fluctuating waistband brings omg i finally can wear a size 3 which brings oh my mini skirt makes me feel like a sausage and then 2 months later oh my pants are too big…

I’ve been losing weight recently. At first I thought I was just being paranoid because last winter when I was sick, I dropped 20 lbs real fast. So any changes I thought I saw, I assumed were me just struggling to see reality. But I’ve been having to wear leggings under my larger jeans, and my 0’s are fitting better than they were 2 months ago. My ring from Bree doesn’t fit as snug as usual. I’m down 8 lbs. I don’t know why. I’m struggling to keep myself from obsessing over it, but the hotel we’re in has a scale which I don’t own at home (for a reason), and I keep using it. Or eyeing it. Maybe i’m wrong. Maybe it was just a fluke, maybe it was on a slope. What does it say over here? Oh. still that. And we don’t know what that means in terms of my disease yet because it’s a recent realization, but I can’t even think about the disease yet, because I’m too focused on the weight part.

Logical Raelee knows that I didn’t purposefully do this to myself. I don’t watch my calories, and I don’t intentionally exercise. I don’t try to keep myself from eating, I just have a picky appetite. I haven’t made myself throw up recently. And then I am surrounded by all these voices of “Bigger Girls are Beautiful” and images of skinny waists with big thighs, ”BIGger is better,” the #thinsperation, “get your swimsuit body ready,” “real women have Curves,” the thigh gaps. They’ve ingrained this irrational fear of changing body shape and I know that, and I work against that fear, and I gain the pounds, and then GPA swoops in and drops them.

Wallowing in guilt for a size I can’t control.

It’s too much.
For a second there was a push of “love your body whatever your size” and then its reverted back to specifics. And I know that you’re frustrated because your whole life the images around you said you were repulsive, but you and I know that isn’t true. You and I know that they are the assholes. We can have diversity and not tell everyone that they need to be one extreme or the other. We can have a vague “love who you are not what you look like” And I know that part of that doesn’t feel good enough. They got to be the center of attention for so long, it’s MY turn but all that does is continue a cycle of frustration and competition.

Stop being competitive when it comes to struggling, please.

Stop laughing at the skinny girls when they say “Yeah I struggle with weight too.”

I know that sometimes they are the same ones who make fun of you but at least give them a shot to show you they aren’t that person before you start chuckling. Because it’s frustrating enough. Stop telling people that they haven’t struggled enough to be worth compassion. Treat others how you wish to be treated, right?

Be kind.

~Raelee

OH! And I know I’m not a skinny bitch, I just think its funny to make long titles in which words are reused. ❤

I’ll Call Her Samantha

My anxiety is a race horse. My anxiety is running at full speed. Wait, ok, maybe my anxiety is one of those coach horses that only stops at a very specific command. The thing is, I don’t know what the command is. So it’s just running and running wild and repeating the same thoughts and telling me what I should do and what i shouldn’t.

My anxiety is not evil. It’s never told me that I deserve to die or that I deserve for everyone in my life to hate me. Sometimes it says I am fat, but then it offers solutions like exercise more, or eat less, or starve yourself, or learn to not care. It’s a rounded out kind of advice, some of it is helpful and some of it is hurtful. It’s just doing it’s best. It’s doing its best to help me become the kind of person I long to be, the kind of person I could be, the level of me that is best and ultimate. But my anxiety is going about it too intensely. Its dragging me by my feet. Its latched into every aspect of my life screaming at me to do better, be better, want better. To improve everything at once. Be more fit. Write more. Write better. Read more. Read different books. Read harder books. Read bigger books. Keep a diary. Write a book. Start a writing group. Be the top of your class. Study more so you’re the top of the class. Watch less television. Watch the popular shows so you know all the references. Watch every pop film. Watch indie films. Watching indie films makes you cultured and cool. Take your camera. Take photos of everything. Be that person who always has a camera. No be that person who always has a book. Be both. Drink tea. Drink loose leaf tea. Drink teas with long names. Only drink one specific far out tea. Drink coffee. Drink it black. Drink it with honey. Drink espresso from a tiny cup. Wear big earrings. Don’t wear earrings with that hat though. Write about this. Write about the trees. Write in a tree. Go outside and write until your fingers turn black. Real writers have pain and push the limits. Push your limits. Push yourself. You can be a much better person than you are. Write about that girl, write about who you wish you were. Don’t write about Anxiety. Put a color to your anxiety. Make it a shape, a person, an animal, a feeling. What’s the aura of your anxiety? What is her name?

I started fully acknowledging her this summer. I read a book about a girl with an anxiety disorder. It read a lot like mine. Like how high school was for me. It felt like stumbling into a room I had in my brain that I didn’t know was there, and finding photos of myself that I didn’t remember being taken. It also felt like I was probably feeding my inner hypochondriac. I decided to ignore it. But then it kept eating at me. I couldn’t stop thinking about it. I thought that maybe i should write everything down. I wrote down everything that felt like it was relevant. All the coping mechanisms I had in high school. All the little things I do now. My random bouts on the floor of my closet. The nail biting. The face picking. The eyebrow pulling. The scripts I had written for myself before there was a person to help me get out of my head. I found numbers of local talkie docs that I could hit up for a diagnosis. To know if I was actually crazy or just crazy for thinking I was crazy. I told a friend. I listed all of the attributes of my personality that make sense now. All the details that didn’t make sense about me until I read this book and looked up this thing and read about it and now it all fits together. My puzzle complete.

But then I didn’t call. I tried, I really did. I’m not just saying that to sound like I did. But the first one didn’t take my insurance and wouldn’t point me in the direction of someone who could. And then I got a full time job and all the sudden my restless spirit had an outlet for a while and it didn’t seem pressing. Besides, Anxiety and Self-doubt showed up and suddenly I was questioning the whole thing entirely. What if my person is just that. What if there is no magical diagnosis that attributes every aspect of who I am and maybe this was just another human attempt to find meaning. To find my place in the world. I assigned myself and made it fit so I could take a shortcut and feel settled in my existence. I tried calling another number, but she didn’t answer. I did more research and found a second number for the same woman so I called that one, because what if she hadn’t updated her listing and the first number I called was the wrong one. I tried again a week later. And then I started school. And once again I had an outlet, I had assignments to finish, I had work. I tried to fit in writing and reading when I could. Mostly I got caught in a rabbit hole, falling down in my own thoughts. The Universe had enough of my bullshit and started punching me in the face with “signs.” A friend of a friend got diagnosed with a compulsion disorder. A popular YA author published a book for the first time in years about a girl with thought spirals. I have a third number. I haven’t called him yet. I probably should. He might help navigate the never-ending self reflections, the self analyzations, the nail-biting, the face picking, The bouts on the floor of the closet, the self-doubt that turns into pulling out those old scripts to remind myself that this isn’t me. But it is me. And I know what he would say. He would ask how many cups of coffee I drink, and I would try to defend it. I would mention that coffee actually soothes my panic attacks, and that its smell is one of comfort. And he would shake his head and talk all sciencey about how coffee can increase your anxiety especially on an empty stomach. Do you drink it on an empty stomach? And I would be that scene in Gilmore Girls when Rory is sobbing to her therapist about how much she loves coffee and I would have to develop an entirely new morning routine for myself. Or he would say that it’s just the coffee and that if I cut it out of my diet I’ll be fine and no you’re not diagnosable or crazy, there’s nothing special about you, everyone has anxiety and yours is nothing major. Stop drinking coffee and we’ll part ways and I’ll never see him again because he was right i’m not crazy I was just looking for a shortcut. But. If i am just searching for a way to stick out why would I choose the monster that almost everyone has? Why would I spend months obsessing over this possible solution nitpicking every flaw in it’s ruling only to realize it’s sound logic, why would I do that unless there was some truth to it? To answer that, I should probably call. But I’ve coped this long, I’ll probably not get much out of it, save for a diagnosis.
So. I’ll just put it off a little longer.

~Raelee

An Afternoon With Canals

I find a quiet nook in the sun near a bed of roses and let the ink sink into an ugly puddle on the page. We’d just been sitting in class, analyzing an essay set in Amsterdam, and I had felt that irritating pulse beginning to push on my tear ducts. All the sudden it is imperative that I find somewhere secluded so I can sit down and cry. Anywhere on campus will do. Never mind the fact that my eyeliner and mascara will stream down my face. There is too much happening in my head. Too many thoughts. Too many ideas. Too many words floating in and out so quickly I can’t possibly reach them in time to put them to paper. IT’S TOO MUCH. I can’t breathe. Or am I breathing too heavily? I can’t even tell. All I know is that I have to get the words out – it is not a good feeling. I don’t feel poetic, or at the very least creative. I feel something stuck in my stomach that isn’t meant to be there and I don’t know how I am supposed to get it out unless I write it down.

I turn the corner and see a bird flying repeatedly into a wall. I don’t know what kind of bird. A small bird. A small grey bird, and it has cornered itself. I pause, long enough to recognize I can’t help the damn thing without getting pooped on or pecked at. It’s the shortest 30 seconds on the planet. I laugh to myself. Is this what writing is going to be like for me? Having drought after drought until suddenly I get “struck by lightning,” six times in a row?

I’m forever cornering myself. Desperately wanting to fly towards the sun but continuously getting stuck, running into the wall thanks to my own stubborn stupidity. Icarus made it farther than I have. But I wouldn’t pretend that is a compliment to my abilities. I say that acting gives me the chance to be vulnerable, but the reality is that I leave the stage thirsty. I’m thirsty, the stage is thirsty, the audience is thirsty. I write and leave myself thirsty. I leave my journals dry on the shelf. Too scared to sing, so the words stuck in my head and throat are left unsaid. If I can’t say the words aloud so they have at least one chance to carry their full weight, then should I bother writing them at all…?

(How do I write so you know that I’m screaming?)

I don’t cry for Amsterdam.
I don’t cry for the classroom that’s half empty.
I don’t even cry for the bird.
It’s for me.

I’m crying for myself. For needing to look for somewhere to cry in private. For being terrified that another might see. Scared for another to know. For my hopeless heart. For desperately wanting the ability to string words together so that they might read like lost poetry. I’ve never cried over a broken heart, save my own.
And that was only because I felt like I didn’t have the skill to describe it.

This entry is a short piece of writing I did for my writing class in the spring. This was one that I wasn’t ready to share quite yet. I wanted to let it sit for a moment. I wrote semi-recently about a panic attack I had, so here is another. The essay referenced is called Afternoon with Canals by Paul Lisicky, and its very good. He has a way of writing so that he doesn’t give you all the details promptly, they’re hinted at. The color of the scenery tells you the time. The reference to the lights tell you where they are. He doesn’t give you the story, he makes you work for it a little. And that was something that I greatly admired and wanted to find a way to emulate. A story that doesn’t give you all the details, but leaves you with an understanding.

Today, I am Angry.

This week has been a nightmare.

As a whole, no one likes cranky ill people. Society wants a pretty, innocent-looking, sick person. They want someone who has faced adversity down the throat and come up with a way to spread love and joy to their community. They want a selfless sick person. They want to be able to pity someone without feeling uncomfortable.

I am not that kind of sick person. I am selfish and greedy. Right now, I am an angry sick person.

I am sick of feeling like I am so close to something that I’ve wanted for a while and then having it ripped from my grasp. I am sick of feeling like a ghost in my own life. I’m mad at myself for even caring that the people around me don’t notice I am missing.

I’ve tried to be the nice sick person. I really have. I apologize to other people for my being sick. I rejoin my life and the people around me say superficial “omg we missed you, are you feeling better!?” and I say “I’m sorry I’ve been gone” to them. WHY!? What could I possibly be sorry for!? Oh, gee Raelee. How dare you have a shitty immune system and people have to find ways to get by without you. It is so absolutely your fault! (Also, I call BS that you missed me. Dude, it takes 2 seconds to message someone on Facebook. If you actually miss someone, then send them a quick message so they know. Don’t pretend afterwards just to make yourself feel like a decent person. Asshole).

Being sick makes me cynical, so I’m sorry, I can’t be your nice little sick person. I’m too pissed off. I’m pissed off that I feel like I’ve missed out on so much. I’m pissed off that the idea of travelling is intimidating, because what if I get sick? What if my body can’t eat the local food? I hate that I was sick and depressed in high school so I didn’t have the motivation to go to a big expensive school like I always dreamed. I’m tired of having to drop classes, or having to cancel plans with friends, or having to pull out of shows. I’m tired of having to stay inside on sunny days. I’m tired of postponing plans for myself. I’m tired of never ending positive people who think they have all the answers. Like, no! I don’t need to keep my chin up! I don’t need to pretend that I’m not hurt and angry. I am allowed to be angry.

I am tired of having to choose between my health and experiences.

This week I had to take a break from my daily routine because I got a freaking flu thing. At first we were scared that it was my GPA coming back but I’m like, 85% sure that it’s just a flu. They checked my lungs and they’re fine. Anyway, I had to miss rehearsals and filming for a project I was passionate about. I hadn’t gotten to audition for it because that was back when I was really sick, but I was assisting the acting director. They filmed Friday and Saturday. I got to stay home.

So I’m really angry.

And it’s times like this, when I REALLY can’t deal with the “Everything happens for a reason <3” type people. I am one of those people, when I’m well. So I get it. You’re not only trying to help me, but also yourself. You think that if everything happens for a reason, that there is no such thing as a bad thing. But I’ve got a limit. And at some point, if things I have looked forward to and worked my ass off for keep getting taken from me, I’m gonna get pissed off. And that’s where we are at right now.

I know that it isn’t much fun to hear about someone who is angry. Especially when the events triggering such anger are out of reach and beyond anyone’s control, so no one can really help fix it. And I know that it’s not good for me to be angry forever. So, I try to only let myself be angry for a little bit and then I try to take care of myself and take advantage of the situation. Not everyone gets to stay home when they are sick. Not everyone has access to the medicine they need to make themselves feel better.

Give me a day or two, and I’ll think about those things.

I just needed to rant. Because I think it’s important to get things off my chest, and especially things about my health. That’s why I started this damn blog in the first place. So this isn’t funny to read, and it’s not inspiring, and it’s not eloquent. But it’s something that is a part of me, so it is something that needed to be shared.

Most of the people in my life are good at not crossing into that dangerous territory that Healthy People tend to go when a sick person is ranting, but just in case I thought I should throw this in: I don’t want posting this to result in a spew of comments full of pity. I don’t want apologies from anyone, I don’t want excuses. I just want to rant about something that is infuriatingly hard to deal with. I want to remind y’all that the sick aren’t always cute little happy kids. Sometimes we’re cute angry adults.

~Raelee

Note to Self: If you’ve known someone for x amount of years and they only interact with you when they’re drunk, chances are they don’t give a flying rat’s ass about what happens to you. At some point, you have to give up the “Well, you never know what they are going through” type thoughts, and just focus on the people who love you and deserve your compassion. Being empathetic doesn’t have to take a toll on your self-confidence, and it doesn’t mean that you should let people walk all over you.

Tears and Fears

Last week was my last infusion for my GPA, as well as a first-time meeting with my new rheumatologist, the person who is my new go to doctor. During this whole journey, every doctor we came across told us that any GPA question we had would get answered by my rheumatologist, that he would have all the answers. It’s a rare disease, and he would be the one with the all the answers. (We had met with a rheumatologist before my treatments, but he came off as unorganized and poor at time efficiency, so my lung doctor got us in with one that she liked and had worked with before).

For several weeks, I wrote down all my questions that I had, planning on asking this one doctor. Questions about my future, questions about what the hell is happening in my body right now, questions about when I can work towards my life again. So, when we finally met the guy last week it was more than a little overwhelming. All the emotions I’d kept bottled up, because I didn’t even know if mourning for myself was necessary, came spilling out. Not to mention I’m PMSing, so like, shit’s real emotional right now. The entire week leading up to the appointment, my carefully painted and grown out nails got all bitten off because of my anxiety of what he might say, and what my future could look like.

Unfortunately, my new doctor took my tears and fears as a sign of depression.

Here’s the thing. I’ve been depressed.
I spent many a day in high school feeling numb and unaffected by the world around me. Dark days that started with hating my reflection in the mirror as I got ready for school and ended with me heading straight to bed when I got home. I’ve got the diary entries to prove it, Jesus it was terrifying. Heck, my Depression is one of the reasons I read so much, it was an escape. And many of those traumatic days were triggered by health flares, so I am in no way trying to claim that my mental health is uninfluenced by my physiological health.

But I was not experiencing Depression last week. If anything, I was experiencing Release.

One thing my mother and I have both learned through the past couple months is how important our voices are when dealing with doctors. We should have picked up on it sooner probably, since we have dealt with so many, but for some reason we didn’t “Get It” till now. My mother pushing the doctors to do tests they thought were unnecessary is very likely the reason that they caught my GPA so quickly. My lack of trust in my first Ear Nose and Throat surgeon is the reason that we got a different one (I’m sorry ENT #1, but why would you wear a creepy smile while talking about cutting into my sinus passage??? Wtf). So with this in mind, I brought up my concerns with my new rheumatologist, that I was not Depressed. I tried to talk about the little projects I’d assigned myself like writing, or cleaning, or painting, or photography.

I’m not saying he ignored me, but he certainly wasn’t listening. And I love my mother, but her immediate agreement with him about the Depression certainly didn’t help my case either.

I’ve been thinking back on that appointment for days now. And I think what happened, was reality punched me in the face. For weeks, I had been spending my days in a fairy tale land. Where my only job is to stay home and indulge myself in my own creativity. It was days of nature documentaries, and decorating dream apartments on Sims, and planning a Go Green initiative for my family. With the exception of a couple spastic 5 second breakdowns over my morning coffee after having issues opening something, my illness wasn’t directly impacting what I was doing. I had restructured my routine so well that the amount of times I interacted with the disease was limited. I stayed bundled up in blankets in sweaters, which meant my lungs didn’t hurt. I washed out my sinuses regularly, so they didn’t hurt too much either. Even on hard days, when I felt I needed to just stay in bed, I only felt like I needed to stay in bed because my limbs were tired, so by staying bed and watching a movie or writing, I didn’t experience a high level of discomfort. It was almost as if nothing was wrong with me at all.

And then we jump forward to that doctor’s appointment and everything became reality.

When I had been “well” I was a public transportation user. So, I walked and bused almost exclusively. Bellevue has plenty of hills, not to mention I regularly wear heels, AND I was in ballet classes. In October, my calves were quite lovely. Not like, athlete lovely, but average civilian lovely. When he tested my leg strength, and I was forced to acknowledge that I wasn’t as strong anymore.
So, yea, there were tears and fears.

When I had been “well” I bought my first pair of pants that were a size 5. In fact, I bought three pairs of pants that were not size 0. After struggling with being underweight as a child, I, Raelee, had a butt. Not like, a Nicki Minaj butt, but a butt. Since I bought those pants I’ve lost 10 lbs., and my butt. When he asked about my appetite, I was forced to acknowledge that I hadn’t been eating as well and that my new pants didn’t fit so well.
So, yea, there were tears and fears.

When I had been “well” I had a semi-decent social life. Girlfriend and I went exploring in Seattle, or hiking with Dog, or study dates at Starbucks. In October, I went to a corn maze with a group of friends; I went shopping; I was in rehearsals for a show. Not like, a huge show, but a decent little script. When he asked if my pain was interfering with my life, and I was forced to acknowledge that I was scared to try to leave my house.

So… YAH!
There were plenty of tears and fears.

This past weekend, ever since he made his claim that I am Depressed, it’s like that part of my brain that’s so slightly miswired was like “Oh! We’re Depressed!? OKAY! We’re Depressed now.” The routine that I had worked so hard on pushing myself into, got shaken. I couldn’t write, I couldn’t draw. Girlfriend and I have been slowing working our way through Lost, and all I wanted to do was lie in bed and watch till my eyes bled.

I’ve spent the past couple days trying to talk myself back into being productive. On Saturday, I planned a party, and I’ve been pushing myself to make decorations. I even walked to the grocery store next door with Girlfriend for the first time in months. On Sunday, I missed an audition that I’d been really pumped for back in October, and I pushed myself to email the director to see if she wanted tech help so that I could still be a part of the project; as well as made plans with friends to help me with party preparations. On Monday, I made Girlfriend’s Valentine’s Day presents.

I’ve been trying to teach that so slightly miswired part of my brain, that while someone looking in on my life might think that I’m not being productive, only I get to decide what my Productive looks like. Trying to teach myself that if I can’t focus on one of my goals, to find an alternative way to have that goal, or push myself to work on my other goals. Depression comes back to haunt me when I get distracted from what I’m working towards, and very quickly it tries to derail me. Instead, I’ve been trying to work with it, instead of getting rid of it completely. Too numb to get out of bed Raelee? Fine, set a timer for 2 hours and read, then you can watch 2 episodes of [blank] but you have to doodle or play Solitare while you watch. Too numb to actually get dressed Raelee? Fine, but you have to brush your hair and wash your face.

So, Mr. Doctor, I understand that I have no medical education other than living through what I’ve lived through. But I do not consider myself Depressed until I let myself slack off.

And considering I haven’t slacked off since before my surgery at the end of December, I am not Depressed.

~Raelee

I should also mention that the appointment went fine otherwise, and I’ve possibly already gained some of my weight back. He and my lung doctor want me to start working towards my “normal” life and to try to leave more often, hence the grocery store walk. I’m still scared to be around other people, because like questions, and my immune system is suppressed, but I got a flu shot and I have hand sanitizer. I’m working on my plans for Spring quarter at school, and I think I’m going to try to get back to my actual job soon, but limit my shifts so that I’m not overdoing it. Other than the Depression thing, he was very calm and explanatory, and it’s sounding like my life may not be as derailed as I thought it would by my new friend, GPA.

If you are dealing with health issues, don’t forget that it is YOUR body. You get to decide what happens to it, and who is happening to your body. If you don’t like a doctor, and you have the means to find a different one, do it. I think I’ll write about my ENT doctor drama to give you a better picture, but I am so grateful that we got a second opinion and replaced her. But also if doctors are telling you one thing, and your body is telling you another, TELL THE DOCTOR, because you know your body better than anyone.

Monday Was A Hard Day

Some days are fucking hard. Today was a hard day. Not difficult, but hard. It wasn’t initially, but my fatigue snuck up on me. I woke up naturally around 9. Usually I wake up around 10. I decided to use what I’ve been learning from The Happiness Project and look at waking up early as an opportunity rather than a drawback.

I got out of bed quietly to not disturb the sleeping girlfriend and dog. I washed my face with cold water and turned the space heater off. I went to the kitchen to get a glass of green juice to take with my morning meds and see my 9-year-old sister at the dining room table playing Legos. I tell Sister I’ll come make breakfast in an hour or so. I go back to my room. I start reading the next chapter in The Happiness Project. I’ve avoided looking at my phone, a new habit I’m trying to pick up as a result of recent political events. So far I’m doing really good at not looking at Facebook before I’m actually awake.

By the time Girlfriend is getting ready to leave for school, I’m exhausted. It’s 11. Sister has not been fed yet. I tell her to cook herself a breakfast patty in the microwave; I’ll make lunch, just let me rest. Now I’m allowed to scroll through my social media feeds. I share the link for my newest post to spam my loved ones. I read an article on how to encourage myself to exercise (psh ok, try again in a month, Article).

The weekend went amazing. We worked on cleaning up our bathroom which had been neglected during all the doctor’s appointments and days spent in bed in pain. I started working on purging bathroom items. We washed our sheets and remade the bed. I got posts written and scheduled for the beginning of the week for when I’m more tired. I read for 2 hours. I remembered my medication. Sunday we cleaned up the kitchen; Girlfriend got laundry done and cleaned out our long overdue fireplace; we put all the Christmas decorations away and started cleaning up the communal areas. I made scrambled eggs and toast for the whole family; got more reading done; wrote some more; uploaded photos to National Geographic My Shot; checked emails; washed my hair. This weekend was full of good days.

But many of my days are like today.
Today the only reason I made it out of bed is because Sister needs a clean leotard for ballet at 4. I made it out of bed today is because Dog needs breakfast. Raelee need breakfast. I made it out of bed today because if I don’t get out of bed I will feel like crap later, and hate myself tomorrow.

To make it easier, I bargain with myself.
If you get out of bed, you can re-wear the fluffy socks from yesterday that are just right there on the floor. If you get out of bed you can watch Gossip Girl and play Sims all day, just not in bed. If you get out of bed, you can have tea in a cute mug. If you get out of bed, you can pee and eat, and then your stomach won’t hurt. If you get out of bed you can have a gold star.

Let me just take a minute to rant about something.

Able-bodied and/or neurotypical people (meaning people not dealing with long impacting structural and/or mental and/or physiological differences such as but not limiting to disability, anxiety, immune deficiency, etc.) cannot fully comprehend the struggle.
I’m not saying that to be a special snowflake, or to discredit their own struggles. I’m saying it because pretending otherwise is petty and a waste of time. It’s ok to not comprehend something you’ve never experienced, that’s a given; just don’t be a jerk about it. I’ve taken my share of mental health days, and I needed them. Sometimes it’s just really fucking difficult to pull yourself out of the sheets because it doesn’t seem worth it, life doesn’t seem worth it. The amount of skepticism that receives is astounding to me.

I’m not stuck in bed because it’s comfy, I’m stuck in bed because I feel like I’m not in control of my own emotions or my own body. Which leads to an internal dialog criticizing my own lack of ability, even though I know I can’t control it, but what if I can and I’m just being whiny? You get the picture. Its a banter, back and forth with myself, and its not fun. 0/10.

If that isn’t a relatable situation for someone, fine, that doesn’t mean that there isn’t this large group of people having mental battles with themselves everyday. I think honestly the biggest issue we have with trying to relate and understand each other is that we never bother trying in the first place. We are a society that is fast paced and full of quick decision-making. Taking the time to fully comprehend what someone is saying to us is not something we encourage and teach, not really. We reward fast choices, and as consequence, I think we condemn true patience.

The rest of the day goes a little better. I’m armored in dirty fluffy socks and a warm sweater. Instead of breakfast I made lunch, and worked on the blog for a little. After we eat, Sister and I work on purging and sorting through her room as part of our new family Living With Less initiative. I get her leotard clean and ready for ballet class, as well as a load of laundry. We work on her room for almost three hours, purge half a bag of trash, half a bag of things to recycle, and half a box of toys to give away. We only comb through a small portion of her room. But it’s a start, and we managed to do it with no fighting, sweat, or tears from either of us.

I Netflix and Tea till Girlfriend comes home. I’m done for the day. It’s only 4 o’clock. For a hard day, I got some things worked on. Not enough to be really proud of myself, but enough that I still got a gold star, so. That’s something.

~Raelee

So You’re Newly Chronically Ill?

First, let me say, welcome to the most exclusive club on earth. Anyone can get rich and become part of the 1%. Anyone can get into some secret society at any college. But very few will develop an illness that dictates the rest of their lives. If you’re super special, like me, you’ll even get to join twice in your life, like me. (Its considered the Platinum membership). Everyone has their own ways of coping and adjusting. If you’re not like me, you’ll reach out to support groups and utilize social media resources to learn more about people like us. If you are like me, you will wear a mask of sarcasm and bear your weight alone until those rare moments at parties when you’ll make a drunken joke relating to your childhood cancer and make everyone uncomfortable… Ah, classy!

Regardless of how you acquaint yourself with your new life, don’t try to talk yourself into thinking you can maintain the exact same life you lived before. After all the tests and procedures you will go through, it will stick to you like gum. It decides your nightmares, it decides what charities you participate in, it decides colors you can’t stand anymore and smells that bring back vague memories….

Don’t misinterpret my tone! I’m not being pessimistic, I’m being as honest as I can with you, because from here on out, it’s going to be hard to find people to be blunt with you. Anyone who doesn’t go through this themselves will never get it. People who see their family members go through it will have their own hell to deal with, and it’s the closest to understanding that they can get. Frankly, I think what they have to go through is even more painful than what we will go through. There’s no amnesia medication for family.

Now, let’s discuss the first steps for adjustment. If you are stuck at home for a while it’s time to build up your daily routine. Every day you need to wake up and get dressed. If that means in your yoga pants and a sweatshirt, very well. If you’re like me and a little vain, wear real clothes. Or at least cute sweaters and knee socks. Find a good tinted lip balm, I like Burt’s Bees in Hibiscus. It adds a little color to your face without having make up to wash off at the end of the day. Since you have free time now, make your shower routine as luxurious as you can. Don’t push yourself to shave, it will take up too much time and the risk of cuts is just not worth it. But make sure you exfoliate, and lather up on lotion afterwards. Keep your nails nice. If you are a nail biter, try to stop (I know, I know) consider this: you are stuck at home for a while, might as well take advantage and grow those babies long and strong. Even if you aren’t leaving the house, give yourself a spritz of perfume so you can smell nice, even if your sweatshirt is on day 5. Invest in fluffy socks, wear them always. Make your room fluffy and soft and warm with blankets and candles. Do what you can to keep it clean and organized.

So, you’re awake and dressed. Time to do. Fill up your music player with music you always said you would listen to; load up your Netflix queue with documentaries that interest you so if you are bingeing, you are learning something. What’s your passion? If it’s more left brained I have no guidance, play online chess or something. If you are right brained, create! I chose to paint, write, and work on my photography. With Gossip Girl or Taylor Swift playing in the background of course. As a bullet journal user, I make the effort to write out a weekly spread and fill it in with goals which has turned out to be surprisingly helpful. I might not be leaving my house, but I make the effort to make a life for myself. If you spend too long drugging your mind watching show after show you will lose yourself. Just because your life is different, does not mean that your life has to be lost.
Once you get an inkling to join the real world, do it. Don’t talk yourself into staying hidden longer than you need. You can start out slow, like getting coffee with a friend, or go big and grocery shop. If you don’t want to share your secrets with the world, then don’t. You get to choose how much people will know. You might have an invisible chronic illness, and you are totally allowed to use that invisibility to its fullest extent.

The most important thing is that you listen to yourself.
Don’t overdo it, don’t push yourself too far.
But don’t forget to keep living.

This will change your life, but you get to choose how much it gets in the way.

~Raelee