I AM NOT YOUR INSPIRATION!

"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!"

*Record scratch*

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.

I decided to write this piece when I came across the lovely Instagram account of artist Mari Andrew. She posted two pieces of art in quick succession. Here was the first:

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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:

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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.

&, you know. "I love you" is always great, too.

Love,

Sof ❀

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