it’s sofia. if you haven’t come across me before, it’s nice to meet you. let’s get into what all this is about, yeah?
i am 20 years old. i have a chronic invisible illness: severe crohn’s disease, with complications of inflammatory arthritis in my hands, knees, & feet. it caused me to put a halt to my plan of becoming a professional violinist.
when i was first diagnosed at 17 (almost 18), i was incredibly ashamed of my illness, & did everything to hide it from people. i’d been experiencing symptoms for years, but hadn’t really said much – until things got bad enough to get me hospitalized.
now, at 20 years old, i am open & honest about my illness. i have used my pain to relate to others; i’ve started making “art” centered around my illness, the person it’s made me become, but also emphasizing my multi-dimensionality as a human being. my illness doesn’t make me one-dimensional, just as being healthy wouldn’t make me one-dimensional.
ever since i’ve had to stop playing violin, i have been writing more. i have been taking photographs of myself at vulnerable moments. i have been making videos, sharing my story & hoping that i’m able to be relatable to other chronically ill young people out there. i know they exist – i am one of hundreds of thousands.
i try to show my strengths as a chronically ill person. i don’t share my vulnerability as often. this is probably the most in-depth i have been to a “larger audience” – & i am incredibly grateful to myself, my friends, & my family for getting me to this point.
i’m also grateful for social media. it has helped me find people who go through similar things; it has helped me spread my message; it has helped me become more comfortable with sharing more, as i saw people responding in a positive manner chronic illness-centered to things i shared. it’s been incredibly validating & encouraging, & i am very grateful for that.
so – you’ve seen some positive videos & pieces that i’ve written. you’ve seen me smiling in hospital beds; now, i’m going to share a more painful, vulnerable moment
i have been nervous about sharing this, but i think it’s valuable – both to me, & to others experiencing similar things – to do this.
i don’t speak as well as i write, but i tried to incorporate a lot of different mediums into this project. there’s photos, there are some “diary entries,” & there is even a video.
before i share everything, let me explain the hashtag “DisabledAnd.”
#DisabledAndCute is a hashtag used on twitter & other social media outlets to raise awareness for those with disabilities, chronic illnesses, & terminal illnesses. it is one of many ways that disabled/chronically/terminally ill people share their stories with the world. it is incredibly important.
however – i am not always “disabled & cute.” sometimes, i am disabled & sad. other times, i could feel disabled & ugly. maybe i wake up one day feeling disabled & powerful. “cute” is one of many ways to describe a disabled person, & i think that the original hashtag is incredibly important, because it shows that disabled people can be beautiful, ethereal, breath-taking…you name it.
i am multi-faceted, & my illness(es) do not make me one-dimensional. “#DisabledAnd” is me sharing more about my illness & how i deal with it. it is me being “disabled & frightened.” it is me being “disabled & vulnerable.” it is me being “disabled & in pain.” it’s also me being “disabled & funny.” it is a lot of things. i took a semester off of university because i wasn’t well enough to attend. that made me feel disabled & weak. it made me feel disabled & tired. it made me – & still makes me – question my future.
i thought it’d be appropriate to share all of these things with the world, as i prepare to return to school in january. i am very proud of myself. i have a lot to work on, but i have overcome a lot.
this is quite frightening to share, but it’s something i have been working on for a very long while – consider it my “final project” for the school term i didn’t have.
i hope you can take the time to look at the “full picture.”
Before you start reading this, go to your local pharmacy/primary care physician & get your seasonal influenza vaccine.
I’m kidding. Read this first, if you feel like you could use some convincing. But please – when you’re done reading this…go get your damn flu shot. Let me explain why, okay? Let’s do this! For health! For less fatigue! For overall contentment.
Okay. First off, what is the flu, & why is it a big deal?
We could get into pages upon pages of articles, research, history books, & a whole lot more material – but let’s keep it short & sweet. If you want to know all about influenza/the flu & its history, it’s right at your fingertips – trust me. But here’s what I think we all need to know.
“The flu” is short for influenza, which is a virus. It’s been around for a long time (ex. Spanish flu) & tends to morph from year to year.
The flu is short-term; it usually resolves within a matter of days/a few weeks, can be treated quite easily, & can, of course, be prevented with a flu vaccine.
The flu spreads VERY easily – according to the CDC (Center for Disease Control) there are over 3 million cases a year in the United States alone. That’s a lot of people. The flu will vary in degrees of severity, but officially, it affects 3 million people per year…in the U.S. alone.
The flu attacks the lungs, the nose, & the throat; these are all mucous membranes, & viruses can spread more quickly & easily through these membranes. For most, the flu is treated with either over-the-counter medications like Tylenol/Aleve for the fever, or prescribed antibiotics. The more hydrated you are, the better – the flu dehydrates your system, so keeping up on fluids is important if you do have the flu already. Rest, drink water & juice, & rest. Of course, check in with your PCP (primary care physician) if your fever is too high, your symptoms are starting to get weird, etc. In my opinion, you should always go to the doctor when you’re not feeling well (if you’re able). This way, you could possibly nip something like the flu in the bud, & not have to pay more for antibiotics/Tylenol/etc. It could save you time, money, & trouble – that’s what I call a win/win/win.
Like I said, the flu always changes, which is why it’s important to get a vaccine every single year. This isn’t like a MMR shot; it’s not a one-&-done, it’s a long-term affair. Yes – that’s inconvienient, but once you look at the symptoms of the flu, it’s a small price to pay.
The most “normal” or “common” flu symptoms will most likely be some of (not always all!) of the following:
There are more symptoms, & obviously they’ll vary from person to person, but these are, across the board, most common. They’re experienced by “healthy” individuals – people who may not have a fun time with the flu, but will not experience severe side effects if they’ve caught it. That’s the majority of the population; they’re called “low-risk” patients.
There’s another, smaller group that is the opposite of low-risk patients in most ways. They’re called…high-risk. Creative! The high-risk patient category includes young children, those who are pregnant, older adults. Last (but most certainly not least), it includes: those with chronic illnesses/conditions &/or weakened immune systems. Hey! That’s me!
What makes me (personally, I mean) a high risk patient? My chronic illness, the medications I am taking for my chronic illness, & my weakened immune system, which is all thanks to the low-dose chemotherapy medication I have taken & will continue to take – it helps my body accept the drugs I need to treat my illness, but it weakens the immune system. It weakens it a LOT.
I had a normal blood panel before I was hospitalized for the first time (in March of 2015). A normal blood panel means…that everything in your panel is in the normal range. Now, two years after diagnosis & various powerful medications, my white blood cell count is very low. That makes me prone to infections of any kind, & puts me at a higher risk of catching the flu than your average Joe. It gets better – like I said, the high-risk category faces all the symptoms low-risk category does…but we have even more! Best of all…these side effects are very dangerous!
So – what kind of symptoms could you experience if you’re a high-risk patient like me?
For high-risk patients, flu symptoms can trigger pneumonia or a blood infection, it can cause diarrhea (which causes dehydration…which causes you to feel even worse) seizures, &…death. Yes, death! A high-risk patient can catch the flu, get an infection, & die…because of the flu.
For those of you thinking thank god I’m not in that category: great!!! I am happy for you, of course. Health isn’t to be taken for granted. But…but! That doesn’t mean you shouldn’t get your flu vaccine. There’s less fear for those who are low-risk, because getting the flu wouldn’t be that big a deal. There’s a lot of fear for those who are high-risk, because I know that even if I get my flu vaccine, I’m still in greater danger of catching the flu than the average Joe – that’s because the flu has a lot of strains, & the vaccine might not cover them all. The average Joe would be able to shake off an unexpectedly severe case of the flu; I, however, wouldn’t. So – if a healthy person hasn’t gotten their flu vaccine, they can still be a carrier, even if they themselves don’t have many (or any!) symptoms. That means that I & many others are still at risk for catching the flu.
Last year, I got my flu shot at my specialist’s clinic – like I said, the flu vaccine is an absolute must for me– no “ifs” here! Still, I got a really bad throat infection, had to come home from university for a few days, & was on steroids for 10 days. I’d gotten my flu shot & taken all precautions – but was still in the ER. This was probably due to catching something laying around…most likely in a public bathroom/classroom.
This brings me to my next point: what (aside from getting the vaccine) can we do to keep healthy this upcoming flu season? The flu is an airborne virus, so it’s pretty easy to catch (remember: 3 million people per year get a case). These are some great tips that should be followed by high & low-risk patients alike:
Wash your hands. Wash. Your. Hands.
I cannot tell you how many times I see people using a public restroom & then just leaving without washing their hands. That’s…not okay at all! There’s no excuse to not wash your hands. The soap is there, the sink is there, & the paper towels are there, too. Please use them.
Use hand sanitizer.
Hand sanitizer isn’t as good as washing your hands, but it’s a good on-the-go way to keep clean. I don’t use any particular one – just whichever is in the drugstore checkout line.
Try to avoid hanging around people you know have the flu.
Let’s face it – it’s plain stupid to hang out with someone you already know has the flu. Healthy people, please don’t do it! Sick (chronically ill) people: don’t feel like a bad person for not being able to bring a friend or S/O food or drink. You’re protecting your health, & if a friend or S/O gets mad about you saying you can’t come over until they’re better…they’re not a good friend or S/O.
If you still feel like your immune system is invincible, take some time to read this:
Basically, by getting the flu shot, you’ll be saving yourself a lot of potential grief. You’ll be saving yourself from getting the flu. You’ll be able to have one less thing to stress about during an already stressful time of year, & you will be helping prevent actual death among the smaller part of the population who are at greater risk for catching the flu – catching more dangerous strains of it, no less.
Okay…what’s the grief you’ll be saving…other than avoiding the flu? Well, like I mentioned, even those at low-risk can still get a bad case of the flu. This can sometimes (not always) warrant a hospitalization, if the flu you happen to catch carries extra risk of pneumonia/other complications. If you get the vaccine, you’re already taking a big step to save your money for something other than potential hospital bills. Hospitals are expensive. Trust me! Please do. In the hospital, you’ll be charged for anything from a bag of saline solution to a few shots of IV medications to a bedside doctor’s visit. Then, you may be sent home with prescriptions to keep your flu under control. All these things cost money – no matter your healthcare situation (co-pays can be expensive, too).
Now that we have that covered, why does one need a flu vaccine every year, & why don’t we get the flu from the vaccine itself?
Like I mentioned several times, the influenza virus morphs; it’s a shape-shifter, if you will. It figures out ways to become stronger in different ways so that it will continue to thrive. So – last year’s flu shot is invalid, because there are different strains being added to the flu vaccine every single year. The flu this year will be different from last year’s; you still may get the same symptoms, but it’s delivered in a different way – again, this is why we need one every single year.
As for catching the flu from the vaccine, there’s almost (I’m speaking “scientifically” because there’s no always; this, however comes pretty close) zero chance that that will happen. The flu vaccine doesn’t contain a live virus; because of that, it can’t give you the flu. There used to (& perhaps still is…I don’t know because I never had that option) be a nasal “injection” that acted the same way a flu shot did…at least, it was supposed to. The CDC no longer recommends getting the nasal method of vaccination, because it contains a live virus. This increases chance of feeling quite sick afterwards, & yes – even catching the flu from it.
No, you will not get autism from the flu vaccine – or any other vaccine, for that matter. To say otherwise is uninformed & insulting to those with autism!!!
Check out this great page “Key Facts About Seasonal Flu” on the CDC’s site – it answers a lot more questions than I did, & does in a more eloquent manner.
So – here’s your push. I hope that if you haven’t gotten your flu shot yet, this little post convinced you to do so. Remember – you’re saving yourself money, maintaining your own health, & helping protect the health of those around you with compromised immune systems. Like I said: win/win/win. Stay safe, wash your hands, get your vaccines, & be careful around those with supressed immunity if you do end up getting the flu. Here are some more ways the flu can be spread:
By airborne respiratory droplets (coughs or sneezes).
By skin-to-skin contact (handshakes or hugs).
By saliva (kissing or shared drinks).
By touching a contaminated surface (blanket or doorknob).
NOTE: Before I begin, I’d like to say that I am very well aware of the…lack of social awareness Selena Gomez has had (“all lives matter” statement & so on). I still think it’s important to hear this out. Selena Gomez may not be likable to you, to me, or anyone else; she may have offended you many times; she could be the worst friend or just bad at conversation. That does not, however, make her chronic illness go away. It furthers my point that chronically ill people are not your angels – chronically ill people have said & do say offensive things. They are not all “good.” They are all not “correct.” I think it’s important to acknowledge that. I hope that Selena’s illness has given her perspective on marginalized communities – because being chronically ill does make you part of one of those marginalized communities, like it or not. Regardless – I think this music video & her latest announcement carry a lot of weight. I hope it will inspire people to speak up about how they feel. I hope more celebrities will continue to open up about chronic illness. Chronic illness (invisible or not) is present everywhere. Either you are ill, or you know someone who is. This is not “rare.” This is common – yet it’s treated as though it has never been heard of.
I wish every single day that more people will continue to learn more, & that chronically ill people will feel confident to speak up for themselves, about themselves, & share other things about themselves, too. Remember – we are not only our illnesses. One more side note: although Selena Gomez & I do not have he same illness, we both have “invisible illnesses.” I think that if you believe this music video has metaphorical significance to chronic illness, it’s quite relatable across the board – no matter what illness you have. For context (in case you didn’t already know) mine are Crohn’s Disease & inflammatory arthritis. This past summer, Selena Gomez released a cheeky single: “Fetish,” featuring Gucci Mane. Initially, there was a lyric video. It is focused only on Selena’s lips, in sparkly gloss. She smiles, bites her lips, & plays with her elegant, almond-shaped nails. It’s undeniably sexy.
Selena’s Instagram, however, hinted that something else was coming – a project with Petra Collins. It was only right to assume that it’d be a full music video. The sneak peeks at the cinematography were…very different, let’s say, than the images provided for the lyric video. Selena looks somber; vague. She doesn’t look as though she’s completely aware of her surroundings. It’s misty. She looks as though she’s trying to find something she’s lost.
I remember the day the video came out – I talked with a few friends about it. We admired the video as well as the photographs (also taken by Collins). My sick friends & I talked about how eerily relatable a lot of the video was. This was not your run-of-the-mill “sexy music video.” There are no bikinis. The almond-shaped manicure, if it is there, is not emphasized. Neither is lip gloss. There are scenes of Selena in a freezer. She looks robotic; it doesn’t seem as though she knows what is going on. She looks in the mirror; she sticks her tongue into an eyelash curler. She’s sprawled on the floor. Sometimes, her hair is soaking wet. There isn’t much smiling, but when there is, it’s eerie – it doesn’t seem to be from happiness.
Confusing, right? People had speculated that this song was about past relationships. After watching the actual video, I didn’t think so. Neither did my sick friends. We thought it was about the relationship between a sick person’s body & mind – & how it is a continuous push/pull, love/hate relationship. You do odd things & scary things. You don’t always know what is going on. You can come across as being scary, when in reality, you are trying to stay alive. Your normal is someone else’s nightmare.
This is in no way meant to glamorize illness. I don’t believe that was Selena’s intention, either, if my theory is correct…maybe I’m completely off the mark, but I don’t think that I am.
But why do I think that I’m right in assuming that Selena’s “Fetish” video is about her illness? Because of an Instagram post she made very recently:
Selena’s fans have been speculating about her absence from the pop culture world. She hasn’t been promoting many of her new projects – she’s been recovering. From a kidney transplant.
When I saw this post, I had to sit back for a second. I truly do believe after seeing this that Selena’s song is about dealing with her illness. After sitting back for a while & tying my own experiences into what I took from the music video, I came up with this:
this past year i was VERY sick – whole sophomore year of university. i lost about 20 pounds. i was on chemo pills. at one point, i was having surgical procedures every 4 weeks. i woke up from one feeling like my throat was on fire; i couldn’t breathe. i was confused because the procedure had nothing to do with my throat. i asked the nurse why. she said that i was so thin, my heartrate scared the doctor. they were afraid i’d die on table. so they intubated me; hence the sore throat.
i remember being in my bathroom at school, on the floor at 3 a.m. sobbing, SCREAMING. once, my mama was afraid because i’d texted her that i wanted to die, but i fell asleep before i could tell her i was ok. she thought that i was dead. i woke up to the cops at my door.
i did very weird things with my body. i still do. i move & dance in odd ways. in march, i stared at my naked body in the mirror & i PUNCHED the right lower side of my abdomen. i punched hard. that’s where my disease originates. i secretly hoped something would rupture. i wanted to die.
i have memories of being zoned out on pain meds; listening to the doctor telling me that my disease had given me arthritis. i would no longer be able to be a violinist. it was this weird, hazy, dream-like state. sometimes i feel like i am still in it. my illness is still here, after all.
in this video, selena’s staring at herself in the mirror. she’s on the floor a LOT. she’s almost always inside/near a bathroom. she’s sick; she’s twisted, yes. she bites a lipstick; she puts her tongue in an eyelash curler just because. when your body is going to shit, your tongue doesn’t matter. who cares if you’re in a subzero freezer, eyelashes brittle, smile frozen, when it doesn’t matter in the end?
you can try to push away illness out but it WILL come back. chronic illness has a fetish for your body. it will always be there, no matter what.
i don’t know how to close this. i’m trying to say that this is a very raw perspective on chronic illness. it’s an ugly, twisted, experience. on the floor in a beautiful dress – that’s wet from a shower you were too weak to undress for. you can still throw a party, though – & you will be the life of it.
i read selena got a kidney transplant this summer. i cried. then i wrote this.
“Can’t see a point in blaming you/If I were you I’d do me too” is probably one of the most significant lyrics in the song (for me). Why?
First off, the song in no way glamorizes sickness or illness. We see Selena in despair, we see her in distress, we see her in pain. There is no implication – at all – that Selena’s “experience” inside this random house is enjoyable, glamorous, or, God forbid: “cute.”
However, those lyrics are the ultimate sarcastic laugh at one’s own illness – something I can relate to in some capacity. Of course you picked me, I think. Why wouldn’t you? That’s because the way I look today…I’d pick me, too.
I am sending my best wishes to Selena as she recovers. A transplant is a devastating shock to the body, & it is an extremely difficult thing to recover from – both physically & mentally.
However, Selena speaking so frankly about her illness (& transplant) brings me hope – hope that more celebrities will speak up about their illnesses. AS more celebrities speak up, more “ordinary” people will speak up. I have hope that chronic illness – invisible or otherwise – will become more widely discussed in the upcoming years. I want to be part of it. I am trying my very best to do so.
THIS IS IN NO WAY MEANT TO GLAMORIZE CHRONIC ILLNESS. As someone who has spent many nights on the floor of their bathroom, crying in pain…I promise you that. I don’t think this music video glamorizes it, either.
I am self-injecting the 4th dose of my medication this afternoon. My blood levels were dangerously high or low when I was on other medications. This one is seeming to do the trick. My blood has stabilized. I am working on gaining energy & weight. This will take time, but seeing public figures speak so frankly about their personal experiences with illness – no matter how small or severe! – helps remind me that I am not disgusting, weird, or odd for having what I have. I got a wild card. So did Selena – so did thousands…millions!!! of other people.
Hello friends! This is just a short diary post & a quick life update.
I am still working! Still working hard at a “real” job. It is very hard; I’ve had some issues with fatigue & treating my hands properly. Since I am now arthritic, it doesn’t take much to get me into an arthritic flare. Usually, I am triggered by cold temperatures. Right now, my circulation in my hands is very bad because of the flare – the inflammation cuts circulation off to my fingers, so they look white or blue much of the time.
Why am I telling you this? For pity? Clickbait? No, definitely not. I’m trying to speak candidly about my illness(es) & raise awareness for them.
I just put out a few resources last night: here’s my YouTube video, titled “My Illness Is Not Your Inspiration!!!” Here’s a short introductory clip – click here to watch all of it. I really hope you do. Disabled or abled, young or old, I hope all of you can either learn something or feel like you can relate to what I am saying (here is a link to the full thing).
Have you heard of Hospital Glam? If not, you should check them out here (on Tumblr)
What is #HospitalGlam? According to the Tumblr:
“#HospitalGlam is a movement for and by people with invisible disabilities that started by appropriating fashion imagery and reinserting it into medical environments using bodies that don’t outwardly present as sick or disabled. #HospitalGlam is about contextualizing ourselves inside an often alienating environment in order to assert our rights as patients & better our treatments. By taking #HospitalGlam photos and posting them on social media, patients increase awareness in their communities and with doctors.”
I cannot emphasize how much#HospitalGlam has given me confidence even when I felt like I had none. It allows you to pretend to be confident. By pretending, you become more confident. This is something I truly believe. Here is something I wrote a while back, pertaining to #HospitalGlam:
“i have crohn’s disease & inflammatory arthritis. these illnesses have crushed some dreams & have ruined many a date/outing/even a vacation. i am not proud of my illness, but i am proud of how i have come to deal with it. every day is a learning process. i still cry many tears over it – i still get angry about the cards i was dealt. but if someone had told me two years ago that i would have shaved my head, dressed up in high-heeled boots & fancy sunglasses to go to a doctor’s appointment – then POSED in front of a chart of the digestive tract…i would have laughed in your face. this seems to be a common thing. the old me would have laughed at the thought of me even daring to do such a thing.
i am proud of the progress i have made – if not physically, then mentally. these are issues that will affect my personal life, my careers, my schooling, my relationships…for the rest of my life. i get joy & confidence for a moment when i make a “glam” pose in front of something that is so funny! no! crohn’s is not a “bathroom disease” – it is a serious, sometimes life-threatening one. some things are getting better, others are not. but my mind is healing, & every day, i learn more about myself, my illness, & how to deal with it. i am grateful for the friends & connections i have made. i am grateful to have a family that supports me. i am grateful to have gotten out of a situation with a manipulative doctor. i am heartbroken over a diagnosis i got over two years ago, but i am still grateful for what i have today. it has shaped me as a person. like it or not, i will give my disease that. for better or for worse, i have learned to be as unapologetic about myself & my illness as possible. & i love myself for it. thank you for creating a platform that inspired me to flaunt my beauty – because beauty is present…even in chronically ill or disabled people! how about that. much love.”
I hope you check out #HospitalGlam’s Tumblr! They are an amazing resouce for people with invisible illnesses. I also encourage abled peopel to take a peek. We can’t continue to raise awareness without abled people listening, learning, & sharing our experiences.
Much love to all of you! I’m continuing to learn & I hope you are, too. Stay tuned for some posts containing my own writing – mostly pertaining to chronic illness, but also on other topics! Remember: I’m more than my illness & all that, yeah?
Also: check out the hashtag #DisabledAndCute on Twitter – it is filled with lovely photographs of chronically ill/disabled people showing off their beauty – whether in a hospital or out. It’s a great movement, & one I always talk about when I can.
I am trying to remain positive despite everything. September will be a hard month. I should be at school, but I am not. That sucks – but I’m making a great effort to make connections with people, meet new people, love new friends/people – & old. I know that I will come out of this a better person.
Have a lovely Friday (& stay tuned for Fenty Beauty reviews when my products arrive).
P.S. Don’t call me strong 🙂 or inspirational 😉
P.P.S. I am trying to make more YouTube videos, but have no earthly idea of what topics I should cover. Suggestions appreciated!
I don’t have much to say here; there’s not anything that requires analyzing or detailed explanations, because it truly boils down to a few things.
The first surgical procedure I had was in May 2015. While in the OR, my mama called Make A Wish. She asked them what they could do for me. I woke up with no knowlege of her asking them.
I wonder why, sometimes – but others, I don’t. Make A Wish is associated primarily with kids with cancer. No doubt about it…pediatric cancer patients make up a huge portion of Make A Wish’s grants. But cancer is not the only illness someone may have to “get the Wish perks” – which, by the way, is a gross statement. It implies that someone’s physical suffering they’ve endured for years can be made up with a single “wish.”
I think that if my mama had asked me if I wanted to apply, I would’ve said “no, absolutely not.” I got diagnosed a few days after my procedure; everything went on hold & a lot of things happened at once. I was angry, sad, in denial – going through the first large grieving process of my life. I didn’t want to be associated with my illness. I was ashamed of it, & I was angry at it for taking away things that I wanted.
But – my mama did not ask me if I wanted to apply. She did the paperwork, got a doctor signature, & presented me with the open option: want it, or not? I thought for 12 hours; I really did!!!
I didn’t know how to feel about being “a wish kid.” Was I sick enough? Was I delicate enough? Isn’t this just for people who have terminal illnesses?
First of all: Make A Wish is not only for children/teens that have terminal illnesses; others can include Crohn’s Disease or any other progressive, degenerative or malignant condition currently placing the child’s life in jeopardy.” AKA: you’re eligible for getting a wish if you have any life-threatening condition & are between 2 1⁄2 – 18 years old.
At the time, I still was unsure as to whether I should accept. There was guilt, there was denial, there was fright. But for God’s sake, I wanted to meet a band who’d brought me joy & laughs when I was in hospital beds. I especially wanted to meet Harry Styles.
By mid-summer, I got a phone call that left me crying – I would go to a concert to see & meet them backstage.
What I experienced that day was a whole 24 hours of pure, unfiltered joy; excitement, nerves, & happiness.
I stayed in the room with the boys for about 15 minutes. That was more than I’d ever thought I’d get – & I left clutching a piece of paper with a doodle on it, after gifting Harry a scrunchie.
Today’s the 2-year anniversary of the day I met One Direction (sounds like a YouTube storytime title). I am a very, very different person.
I’m skinnier, I have less hair, I feel like I’m being crushed sometimes. But I have the same smile, I have the same flashes of joy, & I am years wiser. I have grown to love & accept my sexuality. I’ve learned not to even blink when an IV needle is threaded. I go into surgery with no problem (I do come out crying). I’m more world-weary, I’m tired, I’m sad.
My illness took a lot from me the past year. It took some relationships, friendships, & dreams right out of my hands. I can no longer play violin professionally (see why here). That broke me. Many things have broken me the past two years. It is why I dance outside in the sunrise; it is why I stay up at night, wondering what will become of my future.
Like I said – things have been snatched from me these past two years. I was violently dropped on the floor of adulthood at age 17 when I was hospitalized then diagnosed. It’s influenced the way I behave, the way I act, the people I associate with, & a lot more.
People have told me pain gives you an old soul. Maybe so – maybe not. But something that’s kept me going these past few years is bringing my mind back to those photos in that special file on my computer. I see how happy I looked in the photos; I can sense how joyful I felt. Every time I remember that, I am reminded that life can be cruel, horrible, terrible…but there will be flashes of sunshine. Some will last a long while. Others will be brief. But the 24 hours I spent preparing for “my Make A Wish” & then actually experience it are hard to beat.
I felt joy, love, & acceptance from people I’d never met before; from people who hadn’t known I existed. These people were ones I looked up to, & they treated me with the utmost kindness & respect.
Before I left the room, I asked for Harry to draw me a small tattoo. He did. I fought for about a year to get it, but I got it. It’s a positive reminder on my body that this was something that happened…to me!!!!!
Don’t get me wrong: I know I’m still sick. That wish did not cure me – no wish can cure anyone.
However…I felt the thing that I believe Make A Wish wants the children & teenagers to experience: happiness, no worries, & yes, pure joy for however long their wish lasts.
I have a reminder on my body, but I have more vivid ones in my head. I don’t believe that I would be sat here writing this if I hadn’t had a wish – I don’t know what I’d be doing at all, actually.
That’s kind of my point, though: I know some of you came for the One Direction photos. They’re amazing photos & I love them. But it means a lot more than some posed photos – it means that I can experience horrible things & still have joy in my life – & that my life is worth living because of those fast, fleeting (or beautifully slow) moments of joy.
So, thank you to those who’ve followed my journey these past few years. It is still very surreal to me. Thank you to everyone new who found me through chronic illness, photos on Instagram, or any other social media. I hope I’m able to provide you with some comfort by trying to reassure chronically ill people of their worth, especially young women. If people hadn’t initially reached out to me on social media because they found out I was a “Make A Wish Kid,” who’d met One Direction, I highly doubt I’d be speaking so openly about my illness. I felt like I had something I could give to people; something that would help people. It took a lot for me to step up, but again – in time, I was able to proudly say I’d met them through Make A Wish, after working hard & trying to accept the labels “chronically ill” & “disabled.” Thank you for listening to me & reaching out for support, or giving me support. I appreciate it so endlessly!
Thank you to One Direction! Thank you to Harry Styles. Thank you to Make A Wish – I needed what you so graciously offered me, & I am so glad I accepted it. It’s something that has a special space in my heart.
I’m just very glad to be sitting here writing this right now. Thank you, thank you, thank you. To all the sick people out there wondering if they deserve a wish, let me answer the question: Yes, you do. You deserve that times a million.
A special thanks to my mama, who knew exactly what she was doing when she secretly called Make A Wish. It would not have happened at all, were it not for her phone calls & endless support. I love you.
If you’d like to donate to Make A Wish, you should do so here! If you think you’re eligible, trot on over here.
"You're so strong!" "Thank you for staying so strong!" "I seriously don't know how you do it!! If I were you I'd just wanna be dead oh my god!" "How do you do all this? Superwoman I swear!"
Okay, so those are all actually comments I have (unwillingly) recieved from people in real life & people on the Internet.
Look: I know that I may seem strong. Every chronically ill person may seem that way. It sounds like a lot to put up/cope with, none of it is fun – & all of it is stressful. But guess what: I'm not an inspiration just because I'm ill! Neither is any other chronically ill person.
Ever since I revealed that I'd been diagnosed with a chronic illness, people would never fail to say "stay strong!" "get better" or: "You're so strong. Keep it up."
This has always rubbed me the wrong way. Why?
Well, it's because I'm not always strong. Some days, I'm just existing. Others, I'm making the most out of the body I have. Sometimes I will stay up til 3 a.m., crying from pain or frustration – & then I'll see a comment about how strong I am.
It's funny, but when you're clutching your abdomen, lying on the cold tiles of your bathroom floor at 3 a.m., "strong" becomes less & less encouraging to see & more irritating. "DO YOU NOT SEE ME THIS WAY!" I want to yell. But I can't, because they don't know what I do at 3 a.m. or 3 p.m. They see the parts of my life that I broadcast on social media.
Have I cried before a surgery or an IV? Of course! Does that make me weak? No!!! Why on earth would it be weak? It's a genuine reaction of fright – one that is completely understandable & valid.
If crying over an IV isn't weak, then me simply existing as a chronically ill person isn't strong.
When I read the remarks made on the illustration, I wanted to weep. It was extraordinarily relatable. Because…guess what? Mari Andrew is right. Some days, I don't feel like myself at all. I can get brought down, or I can get bad news from my doctor – & at the same time I'll be getting messages about how strong I am…as I'm sobbing my guts out in the doctor's waiting room.
Basically: this illustration is showing how disabled people become props or medallions to abled people. I've gotten people saying how my illness was a reminder of how lucky they were. I was a reminder that they're privileged.
Uh…news flash: I don't want to be reminded of my own physical & mental illnesses by someone who is able-bodied & of sound mind – someone telling me that my suffering is a cause for their inspiration.
So, if we're really getting savage, that's why calling a chronically ill or disabed person "strong" isn't the right word. No one is strong all the time – I know I'm not. Being sick & getting treatments or surgeries isn't something I do electively. I either put up, or I die. Which one would you choose? Probably the first one. & you probably wouldn't think that you were "being strong" to pick that option, right? That's how it is for me. Some days, I just want to collapse – that's normal. Some days, I want to go out with friends – also normal.
I know that I myself am not "normal" but being told that I'm "strong" implies that I'm a robot; that I'm nothing but some images you can send to friends to talk about my inspirational qualities (if you want to send pictures of me to your friends to tell them how hot I am that's 100% okay). It implies that I'm either more or less human. Neither option is an appealing one.
I also find the statement: "get better!" very very odd. Chronic illnesses are…chronic. There is no "get better." Sure, I can be stable – but after I was diagnosed, there bbecame a whole new normal – & its as difficult & dark & big to navigate through as The Upside Down in Stranger Things. So. Don't call me strong, & don't tell me to get better…because we both know that's a lie!
If you're abled, reading this, & feeling umcomfortable about having described me or some other disabled person as "strong" that's okay. I know that people mean it only with their best wishes & intentions. I know they mean well, but that doesn't mean that it is well. If you've told me this/something like this before, don't apologize or feel badly! Here's a follow-up to the first photo & the story behind it, also by Mari Andrews:
Again, she says it better than I do. But seriously: the "therapy method" works. I do it with my chronically ill friends all the time! Listen! Say that you care about them & that you're sorry they're going through this. Ask what you can do to help; what you can do to make them feel more in control of a situation – or at least calm them down.
I also love the "no need to respond" text. I do this all the time with my friends. If they're not feeling well, I'll send them something nice but include a reminder that they don't need to respond…because guess what? Some days, people are too sick & not "strong" enough to answer. Sometimes responding to people takes up too much energy & too much of your mental capacity. It's okay not to engage with people – look for friends & lovers who understand that kind of need.
Let's be real: I've been in a bad place before, gotten a few "I love you" or "I am so sorry & I am thinking of you" texts…& started bawling…in the best way possible. These kinds of out of the blue messages are incredible, because they remind me that I am surrounded by people who care about me. That gives me incentive to keep crawling.
Let me just be clear. If you're chronically ill, I won't be offended by any "chronic illness jokes" that you tell me or share with me. I try to find as much humor as possible in certain situations. I share them with friends. My friends share theirs with me. It is a great way to laugh together about things you both relate to. I believe that if I didn't insert at least a little humor into my life, things would be horrifically drab & sad! Sometimes it's fake – but even fake fools me for a little bit.
By the way: I am not saying that people in a dark place about their illness(es)/bodies can just force themselves to be funny. Some people can't – that sucks, but it's also okay. Just know that if you're chronically ill & you want to connect with someone to make a light joke, I'm here for that!
If you're an abled person messaging me about how strong I am to get a painful IV placement, an abled person trying to be relatable & joke about chronic illness, or an abled person being generally insensitive about my condition…bye! Blocked. Reported. Not to say you can't relate…but you really can't relate. That's okay!!! Feel glad that you don't have to relate.
I think sometimes, people believe that I have this extremely positive view on my future & my life; that I have loving relationships with people & that things are always joky, & light-hearted. This perception would probably be described (by the layman, at least) as "being strong."
Let me spill the beans & let you know that you're not missing out. Not one bit. In fact, you're winning!!!!! Big winning. So. Much. Winning.
Here are things you can say to me (regarding my illness)that I would appreciate:
Being told that I've helped someone deal with their chronic illness. That's such a great feeling to have!!!
Being told I'm cute or hot – but not like "aw it's okay you're cute no matter what you're sick with." We all know THAAAAATTT!!! Just tell me I'm cute. No need to put my illness in there. Being cute or hot doesn't have to be "in spite of anything." Nope – I can just be cute!!! & you can tell me so
"Is there anything I can do for you?" "Do you want to just let it out to me?" "I love you, & this is a bad day, but maybe it'd be better if I sent you this playlist I made for you!"
Simple things like that. They don't require much effort. In fact, it's the same amount of effort to say "sending you good thoughts today!" as "you're so strong I could never do it" – & I feel really good about the first one, & really annoyed about the second one.
I'm not your inspiration. I'm not always strong. I've danced on tables, I've gotten too drunk at a party. I've made bad choices. I've made people cry. I've made people scream. I'm not always "a good person." My mama still yells at me for leaving empty cups in my room – that didn't change when I got ill. If my mama can still yell at me about my empty cups, you can definitely just…not…say "the s word" & say "I hope you're doing well today, & if not, I hope tomorrow will be better."
Listen to me. Listen to us. Remember that disabled people are the root cause of so events that have occured throughout history. Remember that we are PEOPLE. We are not flawless. I still make people mad, just like you. I don't always bite my tongue. & all of that is absolutely okay. Trust me – I'm not strong. You can start fresh by saying "you don't have to be strong, you just need to know that I can care." You can start fresh by not saying "oh no!! You're so strong, trust me!" You can start fresh by saying nothing at all.
I will continue to uplift & support women & girls who are chronically ill. I have spoken to so many wonderful people with illnesses. I've also spoken to mean people with illnesses. Just because you're sick doesn't mean you're an angel. For some reason, people still seem to think this – & it's just not true.
I find relatability by making friends with chronically ill young people. But I am not automatically your friend if I'm chronically ill & you are too. That would negate my whole point: I am a complex human being! I've done mean things & embarrassing things. I'm a person. I have no problem talking to people who aren't chronically ill; just because someone's chronically ill doesn't automatically make me their friend…& that's normal. In fact, it's humanizing disabled people. It's making us more than bodies examined by doctors, nurses, or curious physician'a assistants.
So, next time you see me – or any other chronically ill person- talking about not feeling so good, say "I'm sorry." "I'm thinking of you." When I or another chronically ill person have something to say about ableism; have something to say about our treatments; have something to say about our life…listen. Just listen, open your ears. Provide love & support. Be a reminder that they don't always have to be stone-faced.
Being chronically ill is a huge burden. It never fails to make those who are chronically ill feel guilty, weighed down – & also feel like they're a burden to others. Calling chronically ill people "strong" is putting more pressure on us. It's making our burdens harder to carry. So: call me hot instead. Call me interesting instead. Ask me a serious question about my illness instead.
“Never. No, I really don’t think I ever will. It’s just not my thing. Plus, it might affect my performances.”
That’s what I had to say about tattoos for a good long time. A good long time = 17 years. I wasn’t interested in getting one, I didn’t know what I’d get, & yes, I did actually worry about it affecting my career – both as a music student who would perform frequently in sleeveless clothing, & as a professional violinist in the classical music world, where tattoos are, for the most part, taboo.
Not interested, didn’t really care. “I just don’t know what I’d put on my body!” I’d tell everyone who asked if I would ever get one, & to those who would show me theirs. I genuinely wasn’t interested.
Then I got sick. After I got sick, I went on immunosuppressants pretty quickly – about one and a half months after diagnosis, to be more specific. That meant that my immune system was now weaker, & wouldn’t be able to fight off infections, bacteria, viruses, or foreign objects (such as tattoo ink or a piercing) as easily. Immunosuppression shouldn’t be taken lightly; it’s killed people & continues to do so. Before I went on these drugs, my doctors told me to get all my vaccines finished up (vaccines can be dangerous if you’re immunosuppressed, since you are technically being injected with a small dose of the bacteria/virus that is the root cause of whichever disease the vaccine targets), to read some articles on immunosuppression & what precautions I could & should take, & to basically tread carefully wherever I went.
So, I was pissed. I was pissed about my diagnosis, pissed that I now had “rules” to follow – even though I was now almost 18 – & just pissed in general at the world, because now, all of a sudden, tattoos were forbidden fruit. No fruit is sweeter than that of the forbidden.
I started to look up cool tattoos. This was, coincidentally, around the time when Buzzfeed released a few videos of people getting tattooed for the first time, & when “Tumblr tattoos” (small, abstract designs, two or three words, or, yes: That One Picasso Sketch) became the new trend. I was seeing very cool body art for the first time, & now, I “couldn’t” get one.
Then, my mama surprised me with some news: she’d contacted Make-A-Wish, & since I had not yet turned 18, I qualified. I was…pretty overwhelmed. Before this, I didn’t actually know that Make-A-Wish was for any child or teenager with an illness – I just thought it was for children or teenagers with cancer. Not so! Make-A-Wish people came to my house, sat down at my table, & asked “what is your wish?”
Well…it was to meet One Direction, yup. Nope, I’m not ashamed of it anymore! I used to be super embarrassed about telling people that I wished for that. Why should I be? I loved those boys all through high school, & their music kept me cheerful for those two & a half-ish hellish weeks in the hospital in March of 2015. They made me happy. I’m not embarrassed to say so anymore; what’s the shame in loving something that makes you happy? Anyways, I digress! My point: my answer was already on my tongue by the time I was sat at the table.
It took about a month, & I got a call: my meeting with One Direction was arranged for August 29th at one of their concerts, & I’d be able to spend actual time with them. After the initial shock, disbelief, & happiness, I started to think. Harry (my unashamed favorite) was actually a big style inspiration for me – fun fact, he continues to be! Those black jeans with every shirt, pointed-toe cowboy-esque boots, coupled with some seriously lovely tattoos. We all know his vibe. Even if you don’t like Harry Styles, you’ve seen him around town (or your screen) & I know you’ve looked at him & thought he looked stylish & put-together more than once. Don’t deny it!
I really liked Harry’s tattoo style. They were mostly abstract doodles – sure, there was his big (nude) mermaid on the forearm, & that big butterfly on the chest, but although they looked beautiful on him, I wasn’t planning on getting a nude mermaid any time soon. It was those little careless doodles that really appealed to me. That got me thinking: what if I got Harry Styles to draw me a tattoo?
Well, spoiler alert: he did. & he did it beautifully, & when he asked what he should draw, I told him to make the call – so it really is made up by Harry Styles’ mind. I won’t get into more detail, because that’s not the point of this post! But it was a wonderful day, he is a wonderful person, & I left starry-eyed, clutching a small piece of notebook paper on which I had a doodle written in black Sharpie marker.
A few months passed. I went to university. I decided to get my tattoo. I was barred – by my mama. She couldn’t physically stop me, of course – but she freaked me out enough by talking about risks due to my immunosuppression that I let it go. But I didn’t actually let it go: my tattoo stewed in the front of my mind for months, & months.
Maybe everyone hoped I would forget about it? Maybe I’d lose interest? Who knows. But I kept asking my doctor. I kept asking my mama. I kept getting my blood drawn to check my white blood cell count, to see if it was safe.
Many months (& tears) later, I had my mother’s blessing, as well as my doctor’s. I walked into the tattoo parlor, ready to go. About 20 minutes later, I walked out – big smile on my face, & a bandage on my left “side-boob.”
(I know, you’re probably wondering why I’m not showing the world – I just choose not to, that’s all!)
So…why was I so insistent about this? Why didn’t I just let it go?
Well, for one, it was a drawing Harry Styles made specifically with my body in mind – I didn’t want the drawing to go in a cupboard…I wanted it on me. Like I mentioned before, fruit is sweeter when it’s forbidden, & the tattoo situation was no exception. &, finally, here’s the biggest reason:
When I was diagnosed, put on medication, subjected to countless procedures, infusions, exams, & doctors, I felt like the control I had over my life was slipping out of my hands. I had scars I didn’t ask for; scars I hated. I felt like I was completely at the mercy of my illness. I felt like I wasn’t really my own person. I desperately seeked for ways to reclaim my own body. This tattoo was one of them. I figured that if I had some scars that I hated on my body, I might as well make some permanent marks on my body that I actually liked.
If you’re wondering if I had any issues with healing: no, I didn’t. Well…that’s not entirely true. A few weeks after I got my tattoo, I was in the hospital overnight for a high fever – however, I’m still unsure whether the tattoo was the cause, as it was many days after I’d been tattooed. Regardless, the skin healed just fine, I had no other issues, & it sits happily on my left side to this day.
So, it sat for a few months, & I was all good & happy. By this time, however, I already knew I wanted more. I didn’t know when, or what, but I knew that I would get more.
Not many months after (about 5) I got another. This one was without the blessing of my doctor or my mother – in fact, it was without their knowlege, as well. This one is one you’ve probably seen if you follow me on social media – I don’t hide it, & am, in fact, very proud of it. You know the one: those two pointy things on my right inner upper arm. Some people thing they’re knives (??) others think they’re claws. They’re actually a pair of cat fangs. I decided on this because we’d lost my childhood cat in January (we had to put him down as he had an uncontrollably large tumor). I figured it would be a good way to pay homage to the cat who’d gotten me through my childhood, solidify my status as a cat lady, & also look very cool – fangs are edgy.
So, I saved up some money, called a place a block from my residence at school, & trotted on over one cold evening. I was done, & I was happy. It felt…very good…(sorry, Mama!) to do something so spontaneously.
Did I know the risks? Yes. Did anything bad happen to me, like a fever, a skin infection or the link? No. Did my mother get furious at me when she found out abou 3 weeks later? Yes. But it was already there. Do I regret it? No, I do not.
Maybe I would’ve regretted it if something bad had happend…but I still don’t think I would. Call me irresponsible; it’s fine. But I think it’s hard to make people understand the mindset of a sick person without actually being a sick person. Like I mentioned before: sickness = lack of control. Lack of control = frustration, anger, sadness, & the feeling of helplessness. I hate those feelings. I wanted to feel normal for an hour or two. So, yes – I pulled a rebellious teenager & went out to “get inked.”
My parents were not very happy & actually quite concerned that I’d done this. I get it – from a parental perspective, it’s probably nerve-wracking to have your chronically ill, mentally unstable (at the time) daughter go out & get a tattoo without your knowlege. But…I did it, & it took a long time for me to explain why I did it, but they get it. My mama has literally told me “I understand.” They’re glad I’m okay, they’re glad it went safely & that I was as responsible as I could be for doing something so irresponsible – & that’s the end of it.
So, now for the questions: the usuals are “what do they stand for?” “how many do you have?” & the big one: “how much did they hurt?”
What they stand for: My “Harry” tattoo marks an extremely happy event in my life that occurred after I was diagnosed, when I was still very angry & sad about my illness, still in stages of denial, & convinced that I would never be truly happy again. Meeting One Direction – especially Harry, who’s inspired my style, helped me come to terms with other parts of myself, including my sexuality – was one of the purest days I’ve had. I experienced nothing but raw, unfilitered joy & happiness…something that I didn’t think would be possible after getting diagnosed. Now, whenever I feel bad, I try to look in the mirror or down my side at my tattoo. It really does serve as a reminder that despite all the fear & pain I experience, there have been & will be days that make being alive a hell of a lot of fun. So that’s that. My fangs tattoo is kind of a symbol of me taking control over my own body, a reminder that in the end, I actually do hold the controls – I can stand up to a doctor, I can refuse treatment, I can decide not to take a medication. It’s a reminder that while I have the authority to end my life, I am actually choosing not to. It’s a reminder that I am actually choosing these treatments, even though they’re no fun at all. It’s a reminder that the disease I have was absolutely not my choice – but I can still do things that help me cope with the things I have to put up with.
How many do you have? Do you want more? As of right now, I have two: the two I talked about in this post. Yup, I do want more! & I will get more. Right now, I don’t have the desire or inspiration. But when I do, I will get another one. Maybe even two more. Or three. I don’t know! But I do want more.
How much did they hurt? For me, not at all, honestly. My pain tolerance has been distorted thanks to my illness – I don’t blink at IVs anymore, & I can even inject myself with my own medications – & they both hurt way less than an IV, in my opinion. Remember: everyone’s pain tolerance is different, & different people have different opinions on what hurts more. I was warned that a tattoo on my side would be very painful, & that the upper inner arm wasn’t a picnic, either. But truly – I didn’t have an issue with either of my tattoos. Granted, they’re both small, & granted, I can usually tune out pain pretty well…but still, even if I weren’t ill, I don’t think I’d be bothered. I was nervous for the first one, yes, but once the gun got going, I was completely fine. I’d best describe it as a cat scratch! It hurts a little more in some places, & less in others, but either way, I would never describe it as a painful experience – uncomfortable is what I’d call it. Both of mine were over very soon, too. After my first one, I was a tiny bit nauseous, & needed some sugar. After my second one, I waltzed out the door, ran to my place to grab my violin, & sprinted to an evening dress rehearsal I had for a concert the following evening. I played difficult music under hot lights for two hours with no issue. No big deal – at least not for me!
By the way…to all of the chronically ill people who might be reading this: I understand your craving for the sense of control. I get it, I really do! I would encourage you to be as safe as possible if you do want a tattoo, a piercing, or some other form of body modification, especially if you’re on immunosuppressants. I actually did wait it out for my first one, & I had good blood levels – good enough to be classified as “normal.” For the second one, my white blood cell count was quite low…& I still went ahead & did it. I’m not saying “don’t do it” because I’d understand if you did. I’m just going to go on the record, be a mom, & say: be careful! I do owe you that.
If you’re not chronically ill, I hope you’ve still gotten something out of this post! I hope I answered the constant question (that I also kept asking) of how much a tattoo hurts as clearly as I could. It’s hard to describe; it’s easier to actually feel it yourself. “Cat scratch” is the closest thing I would pin it to.
People always say: “imagine what that’s going to look like on you when you’re old!”
Guess what? Age is going to affect me no matter what. Even if I’m a tattoo virgin, my skin will still wrinkle! I’ll notice my boobs are drooping; see some age spots pop up. I already have some scars on my body that I didn’t ask for. I don’t care how wrinkly my fangs get, & I don’t care what my left side boob looks like at age 75. I really don’t. Those other scars will be there, & they’ll be a reminder of bad, painful things I went through; the tattoos will serve as a reminder of some happy memories or events that I experienced throughout life. That’s what I like to call tattoos: happy scars that I chose to recieve. I like that…& I like my tattoos. No…I love my tattoos!