#BellLetsTalk: Dig a Little Deeper

Today is #BellLetsTalk day.

I know you all know that, but what most of you don’t know is that today, I’ve been struggling a lot with whether or not to make a post about my own experience with mental illness. Even as I write this, I find myself questioning whether or not I should, which is why until now, I’ve just been taking everything in today. So far, I’ve read a lot of stories from people – friends and strangers alike – and I’ve seen a lot of posts and tweets encouraging an open and honest dialogue about mental health.

Anyone who knows me knows that I believe in that.

I believe that it’s time for us to explore mental health in a new way, and it’s time to end the shame, and the fear, and the hurt that comes as a result of the stigma surrounding mental illness. This is why in years past, I’ve talked a lot about the fact that I have Generalized Anxiety Disorder with panic attacks, and I’ve shared some of my own experiences with feeling depressed and, at times, suicidal. When I’ve done this, I’ve seen the tremendous outpouring of support that often comes on #BellLetsTalk day. I’ve had people tell me that I’m strong, and that I’m brave, and that they admire my willingness to speak openly about what life is like for me as a woman living with mental illness.

This year, though, I’m going to try something different, so here it goes:

Hi, my name is Stephanie, and I have a personality disorder.

Some of you know that already, but some of you don’t because I don’t spend as much time talking about that as I do talking about my anxiety. I don’t speak about that part of myself in the same way, because even on days like today, the reaction I get is usually very different than the outpouring of support I mentioned earlier.

That’s because we live in a world where people with personality disorders are characterized as violent, scary, manipulative, and bad. Even now, as our society begins to make some progress with respect to reducing the stigma around mental illness, we continue to prioritize some diagnoses over others, which is why folks like me often only feel comfortable sharing PARTS of ourselves on days like today.

So if you want to talk about mental health, and mental illness, and reducing the stigma, then do me a favour:

Let’s talk about how people with personality disorders are not inherently manipulative or selfish. Let’s talk about the fact that folks diagnosed with schizophrenia are far more likely to be the VICTIMS of violence than they are the perpetrators. Let’s talk about how OCD is about so much more than just “being super neat/clean.” Let’s talk about how asking someone who is diagnosed with bipolar disorder if they’ve “ever thought they could fly off a roof” is fucking rude and inappropriate. Let’s talk about dissociation, and about mania, and about psychosis, and all of the big, bad, scary things that SO MANY PEOPLE conveniently leave out on #BellLetsTalk day.

Let’s talk about how women, people of colour, members of the LGBTQ community, and other marginalized groups are WAY more likely to struggle with mental illness – and YES, let’s talk about how men who do struggle are WAY less likely to come forward. Let’s talk about privilege, and about power, and about how much of that we all must POSSESS – myself included – in order to be able to come out and ID as mentally ill today. Let’s talk about ALL THE PEOPLE who are too afraid to claim the label because they feel like they shouldn’t or like they can’t. Let’s talk about how wrong it is to frame mental illness as something that needs to be “beat” as if those of us still struggling have somehow lost a battle.

I struggle every damn day, but I haven’t lost SHIT.

So if you want to talk, by all means, let’s fucking talk. But you better be willing to LISTEN, too, because I’ve got a lot more to say than just, “turn 😦 into :)”

– Stephanie, ECC

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Sorry I’m Stubborn: Saying Thanks to My Social Work Fam

Today was a long day.

First, I arrived on campus this morning only to find that my reserved accessible parking spot was completely filled with snow, with nowhere near enough space for me to actually park my car. Boo.

Then, I went to my first class. It was long, but not awful. At the very least, it was great to see my social work fam again.

After that, I had to get to my second class, which meant walking from one campus to another (for real, the buildings are super far away from each other). By the time I got there, I had a partially dislocated hip, a dislocated knee, a dislocated shoulder, and one seriously sore back. I ended up in tears talking to my professor, and by the end of the class she was insisting that I not walk back to the library, no matter what. She arranged for one of my classmates to drive me back, and recruited a few more of my peers to make sure that I accepted the drive, regardless of whether I wanted to or not. Despite my vehement objections, I got a ride back to the Killam, where I sat with friends until my third and final class of the day.

That third class? It’s in an awful room. The desks are attached to the chairs, and the chairs are so narrow that I barely fit into them. So, it should come as no surprise that when I settled into my seat at the back of the room, I suffered yet another injury: A rib subluxation.

There was a pop, and then so much pain, and suddenly I was gasping for air. It hurt to breathe, it hurt to move, it basically just hurt to exist. My body had clearly decided it was done for the day.

My mind, however, disagreed (more on that later). Naturally, I decided to try and wait it out.

So I sat in the back of the class, one friend on my left rubbing my back and trying to convince me to go to the hospital, another on my right asking every few minutes if I needed anything. As it started getting harder to breathe, and I started to get more and more dizzy, I felt myself starting to panic. I grabbed my friend on the left, said I needed to leave, and both tried to help me up, pick up all my stuff, and help me out of the room. I nearly collapsed in the aisle, but eventually (with help) made it into the hallway, where I reluctantly sat down.

After that, I was temporarily surrounded by a group of concerned classmates, all of whom told me I should go home. I tried to argue, but eventually let a friend drive me home (in my car, which I was unable to drive).

As I said, it was a long day.

See, in my head… I’m still capable of so much more, you know? Physically, I mean. I sometimes still think of myself as the 16 year-old Tier 2A soccer player. I feel, in my mind, like I can do anything. So I push myself, often to my own detriment, and I refuse to accept help when it’s offered. I get stubborn, and sarcastic, and I try to joke my way through the pain, and the frustration, and the anger.

But here’s the thing.

That doesn’t mean I’m not grateful for the caring, and the concern, and the support… because I am.

So, to my social work fam – who stuck with me today, and who cared for me when I refused to care for myself: Thank you. I see you, I appreciate you, I love you, and I don’t know what I would do without you. I know I’m stubborn, and I know I push too hard sometimes, but I promise you I’m doing the best I can. I’m not good at having all eyes on me, and I’m not good at asking for or accepting help… but trust me, I love y’all for giving it to me anyway.

I really, really hope you know that.

– Stephanie, ECC

 

Music as Healing

I’ve loved music for as long as I can remember.

I know that’s cliché, and almost everybody says it, but I really, truly mean it. Music is something that has just always been a part of my life, you know? I started taking piano lessons when I was basically an infant (okay, I was actually ~6), I played clarinet in the school band in grades 6-9, I taught myself how to play the guitar and the harmonica, and I like to think of myself as an amateur drummer who only lacks a drum kit (Christmas is coming, family… let me play drums). The next on my to-learn list is ukulele, but honestly if I could learn how to play every single instrument in existence, I’d be happy as a clam.

More than anything, though, I love to sing.

Ever since I was a little kid, I’ve loved singing. We’ve got home videos of me literally pushing my sister and cousins out of the way so I could be front and centre singing Rudolph. Sure, it was rude of 2 or 3 year-old me (I don’t know how old I was, just that I was a jerk) but it was the beginning of my love for singing. Growing up, it was that love that brought me to my school and church choirs at 8 years old, to the Dartmouth All City Youth Choir at 12, and to Berwick for Choir Camp every summer for most of my childhood (and my youth).

So, basically I grew up as a total choir nerd.

Sadly, at 22 I don’t sing in choirs anymore – I outgrew my school choirs and the DACYC, and I haven’t been to church in ~4-5 years. Outside of that, I just haven’t found a choir to “replace” the ones I was in for so many years.

Despite that, my love of music is still so, so strong. That’s why I felt so blessed to have the opportunity to join the DACYC earlier this week for their performance at the Halifax Stanfield International Airport. It was the first time I’d sang with a choir since 2011, and let me tell you, it felt like coming home. Having sheet music in my hands, learning new songs, seeing the smiles on people’s faces when they heard us sing… ugh, y’all it was so great.

It’s funny, though, because believe it or not the annual airport trip is pretty physically demanding. Let me lay it out for y’all:

  • We left the house at around 8:45AM to get to the Dartmouth Music Centre where the choir is based. Early mornings are exhausting mornings if you ask me.
  • We stayed there to rehearse from about 9-10AM. It is worth noting that the chairs in there are not great for cripples.
  • We then made our way onto 2 school busses to drive to the airport. Again, it’s worth noting that school busses are the worst ever.
  • When we got to the airport, we had to walk from the bus terminal to the main entrance, and then make our way up a million flights of stairs to get to the observation deck where we could eat lunch before our performance.
  • Then we went back down the million flights of stairs to get to the performance area, where we stood on some bleachers for an hour and sang awesome Christmas songs.
  • Finally, we got back on the busses and headed home.

When I was less crippled, that was a tiring day, but not necessarily a painful one. Now, though? That day should’ve KILLED me. I should’ve left that airport in complete, full body agony.

But I didn’t.

In fact, when I got home I was in absolutely no pain. Instead, I felt refreshed and invigorated. I was reminded of just how important singing is to me – and I’m not talking about car karaoke or obnoxious shower singing, though I do enjoy both (seriously, if you’re ever driving with me, expect to sing). I was reminded of how therapeutic and healing music can be.

If I’d spent the day on my feet doing anything else, I’d have been in a tremendous amount of pain when all was said and done. When I’m singing, though, I just feel happy, and full, and like all is right in the world. So after the airport trip, there was no pain, no anxiety, just joy.

That is so rare for me, y’all. ‘Cause here’s the thing… even on low pain days – days with no dislocations, no falls, no injuries – I’m still in pain. That’s one of the realities of being (dis)Abled and living with multiple chronic illnesses – I am literally ALWAYS in some degree of pain. So for me to feel none? That’s magic. That’s a miracle.

It got me thinking a lot about music as therapy, and I found myself wondering why I’ve been neglecting the importance of emotional and spiritual healing for so long. For me, music is magic; it sends me to a place where pain isn’t the constant reality, and it erases my fears and anxieties in a way that nothing else does. Yet after I graduated high school, when I’d outgrown so many of my musical outlets, I did nothing to fill that gap. I let that part of myself slip away, and now I’m beginning to realize that it has taken its toll.

Well, not anymore!

According to the Canadian Association for Music Therapy, music can be used to “promote, maintain, and restore mental, physical, emotional, and spiritual health.” Now, they’re obviously talking about music therapy specifically (which is facilitated by a certified music therapist, and is pretty awesome) so this is not that. BUT the truth is, I believe that music in any context has the potential to do what the CAMT is talking about here. Music is something that, for whatever reason, heals a lot of people. Now, I should specify that when I say “heals” I don’t mean it magically erases illness or (dis)Ability. Music is not going to eliminate my Ehlers-Danlos Syndrome… but on days that I’m dealing with copious amounts of pain, or struggling with severe depression? Music helps, and music heals. It gives me the hope to keep going, and when you’re sick, hope is a really powerful thing.

So I’m going to make a conscious effort to make more time for music. Maybe that will mean stopping by the DACYC rehearsals on Tuesdays every now and then, maybe it will mean finding a church choir to sing with, or maybe it will mean teaching myself how to play a new instrument or two. Maybe I’ll take voice lessons, or find a music therapist, or a community choir… I don’t know yet. But if anyone reading this wants to grab a few instruments and jam, that sounds like a great place to start.

I’m gonna leave y’all with a verse from my favourite Emily Dickinson poem:

Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all

Thanks for reading, y’all. I hope you all take some time to sing today.

– Stephanie, ECC

PS. I really, really encourage everyone to check out the Dartmouth All City Youth Choir. Karen Newhook MacDonald, Michael MacDonald, and June Rigden are three of the most wonderful people I’ve ever met, so if you or your kids are in grades 7-12 and in the area, you should audition for DACYC – it’s a great group. I also really, really encourage folks to check out the Choir Camps put on by the Nova Scotia Choral Federation. Camp always brought me so much joy, and it let me meet so many amazing people (Clare Bustin if you read this, there is a 150% chance I mean you). Just go to camp, y’all. Bring your friends, send your kids, whatever. Go to Berwick for camp.

“Perfectly Healthy”

[Disclaimer: I’m posting this without having edited it… apologies if it’s incoherent, but that’s how I’m feeling so I guess it would be fitting if that’s the case]


 

If you’re reading this, let me be clear in saying that this post is not for you.

Today, I’m not writing to teach you about (dis)Ability or ableism, and I’m not writing to inspire or move you. Frankly, I’m not writing for your benefit at all.

Today, I’m writing for me.

I’m writing so that all the fear, frustration, and resentment I’m feeling right now doesn’t settle into my heart and send me to a place of constant, unrelenting anger. I’m writing so that maybe, if I’m lucky, I’ll feel less defeated, less alone, and more hopeful.

If you learn something, great. If you get a better understanding of who I am, and what it’s like to be (dis)Abled, fantastic. But this post is not for you, it’s for me… because the past couple days have been hard, y’all. They’ve been tough.

So, here’s the story:

Over the course of the past, say, six months, I’ve been having an increasingly difficult time hearing. Whether it’s music or the television, one-on-one conversations or lectures in class, I’ve just been struggling to hear. I’ve found myself turning up the volume more, asking people to repeat themselves, leaning in to have a chance of understanding the words coming out of people’s mouths. It’s been a difficult adjustment for me, and for a long time I was scared to say anything to anyone. I thought to myself (thanks to my past dealing with healthcare professionals), “no, Stephanie, you’re just imagining it – there can’t be anything wrong with your ears!”

Naturally, then, I ignored it. I let it go until finally, I couldn’t anymore. It got to a point where I found myself crying when I had to ask my mom or my sister to repeat themselves yet again because I just couldn’t hear what they were saying.

It started to scare me.

So I went to see my GP, and she looked in my ears and told me that my eardrums were sclerotic. She said that this meant they were essentially being slowly covered in scar tissue, and that it could be causing my hearing loss. She gave me a referral to an audiologist who could administer a hearing test to assess the severity of my hearing loss, which is what happened yesterday.

I went in, filled out a brief questionnaire, let the audiologist look at my ears, and hobbled into a sound booth where I was asked to click a button whenever I heard a beep. It was pretty straightforward stuff, nothing unexpected.

But colour me surprised when the audiologist told me I have “perfectly healthy ears” and “perfect hearing.”

You’d think that would make me happy, right? No signs of physical damage in my ears, no anatomical abnormalities that could result in hearing loss… nothing wrong at all. On paper, I’m apparently the picture of perfect health (gag me).

And yet as I walked out of my appointment, I almost immediately started crying because instead of feeling like I’d been handed a blessing, I felt like I’d been kicked in the chest. The familiarity of it was enough to knock the wind right out of me.

See, I was about 9 or 10 years old when I started to really struggle with with my health. My fourth grade teacher was concerned because I always seemed exhausted in class – like, I was on the verge of literally falling asleep almost all the time. She ended up contacting my parents, and I got sent to have some blood work done. Everything came back fine, so nothing came of it.

Over the course of the next few years, new symptoms started to pop up. First I started experiencing severe pain and swelling in my legs, but over time it got much worse. I went from a healthy, active, sports-loving kid to being always injured, always in pain, and always sitting out in gym class. I started dislocating joints, having widespread inflammation and pain, getting hives and debilitating headaches…. the list goes on. Over and over again I got sent for more blood work, but over and over again it came back fine.

The list of specialists I saw goes on forever. Asthma specialists, physiotherapists, occupational therapists, nutritionists, rheumatologists, orthopaedic surgeons, naturopaths, neuro-opthamologists, ENTs, and a whole lot more that I don’t care to list. I was in and out of doctors’ offices, pushed from one appointment to the next without ever receiving any answers. I was getting sicker all the time, and nobody could tell me why. It was always, “you look perfectly healthy to me!” or, “the tests came back fine, so there’s nothing we can do.”

It got the point that my GP actually outright accused me of being a liar. She looked me square in the face and told me that I was a perfectly healthy 20 year old woman, and that I was making it all up in my head.

See, there’s a saying in healthcare, “when you hear hoofbeats, think of horses, not zebras.” It means that when you’re looking at someone’s symptoms, you should always look to the most basic answer first. Stuffy nose and sneezing? You’ve got a cold, not cancer.

Makes sense, right?

But here’s the problem: If, after exhausting all of the most basic explanations, you still haven’t found the answer? That shouldn’t mean you give up and say nothing is wrong. It shouldn’t mean you send a 12 year-old girl home crying after telling her, “suck it up, princess.” It shouldn’t mean you call your patient a liar.

When I finally saw a cardiothoracic surgeon last year who diagnosed me with Ehlers-Danlos Syndrome, my GP still refused to write the diagnosis in my file. She refused to believe that after all those years, someone had found something that she couldn’t. It wasn’t until I got a new GP and saw a geneticist who diagnosed me with Ehlers-Danlos Syndrome, Hypermobility Type, specifically, that I had it acknowledged and found some peace.

The point is, though, that it took 12 years. 12 long, hard, exhausting years of self-advocacy, of fighting with doctors I shouldn’t have had to fight with, and of listening to them say, “you’re perfectly healthy,” even when I knew I wasn’t. I knew something was wrong, and NOBODY would listen.

That’s how I feel right now, y’all. It feels like deja vu.

I know myself, and I know my body. I know that my hearing is a problem, and I know that it’s something that has been getting worse.

But I don’t know if I have it in me to push for however many more years to find answers. I don’t know if I can handle the emotional exhaustion that comes with having to constantly fight for care. I don’t think I can do that on my own.

I’m tired, and I’m scared, and I just don’t know what to do anymore. For now, this is it. This is what I have in me, y’all. Just words.

So thanks for reading.

– Stephanie, ECC

Mind Your Beeswax: Non-Disabled Folks and #TheAbleistScript

This post is based on the following encounter I had with a couple while at work this past Sunday:

Nosy Guy™: What’s wrong with your legs?
Me (sighing): I have a connective tissue disorder.
Nosy Guy™: Oh, weird.

After that, Nosy Guy™ walked away, leaving me to ponder why non-(dis)Abled folks so often seem to feel entitled to my story, my medical history, my body. Now, in this case, the initial exchange was short, but as I answered his question, I found myself fighting the urge to respond a bit more sarcastically with something like, “nothing, what’s wrong with your face?”

Why, you ask?

Because the questions… they get exhausting. It’s tiresome having strangers ask questions about your body all the time, and while y’all know I’m ALL about education and advocacy, I have to admit that sometimes, being bombarded by Nosy Nellies just makes me cranky.

On Sunday, that was especially true, because the exchange didn’t end there – nope, of course not! About five minutes later, Nosy Guy™ came back over to my desk, this time accompanied by his wife. The situation unfolded like so:

Nosy Guy™: My wife is a doctor, can she see your splints?
Me: *silence*
Nosy Guy™ (to his wife): See? Look at her legs.
Nosy Guy’s Wife™ (staring): Who’s your doctor?
Me: I don’t fe-
Nosy Guy’s Wife™ (to Nosy Guy™): Those could cause muscle atrophy, what did you say she said was wrong?
Me: *clears throat*
Nosy Guy’s Wife™: Who did you say your doctor was?
Me: Not you. Can I help you with something else, ma’am?

After that, Nosy Guy™ and his wife walked away looking confused and offended, mumbled something about “teenagers” (lol, I’m 22, sorry folks!) and didn’t approach me again for the remainder of the day.

But here’s the thing: They never should have approached me at all, at least not for the reasons they did.

If they had needed me to do something for them – you know, something that was actually related to my job – that would have been fine! But they didn’t, they were just being nosy. They saw me working the desk, noticed that I looked different, and decided that they wanted to know why, even though it’s absolutely none of their business.

Why is that? Why is it that non-(dis)Abled people think they have a right to know that information? Why is it that they somehow feel entitled to ask a stranger who their physician is, or “what’s wrong” with them? (Don’t even get me started on that language, either… nothing is “wrong” with me, like ew, stop).

Funny how privilege works.

Interestingly enough, though, the timing of this not-so-pleasant encounter couldn’t have been better, because just the other day, a hashtag was created called #TheAbleistScript and the whole purpose is to give (dis)Abled folks a platform to speak up about all the gross, unnecessary, ignorant, ableist shit that comes out of non-(dis)Abled people’s mouths – and trust me, there’s a lot.

So today, I’m going to talk about #TheAbleistScript, and give y’all the 5 biggest examples of things that you probably SHOULDN’T say to (dis)Abled people – at least in the opinion of this cripple:

  1. “You don’t look sick”: Stop. Just stop right there. DO NOT SAY THIS. I know that a lot of people think it’s a compliment – I mean, who would want to look sick, amirite? But here’s the thing, y’all. This remark? This simple little statement that we don’t “look sick”? It has been used for so long, by so many people, to completely invalidate the experiences of (dis)Abled folks – ESPECIALLY folks with invisible illnesses. What I think a lot of people don’t understand is just how difficult it can be for a lot of us to find a doctor who will listen to us and who will believe us. It took me 11 years – that’s half my LIFE so far, by the way – to finally have someone acknowledge that yes, I am sick. So guess what? I LOOK SICK. This is what a sick person looks like. I should know, because I am one. So please, for the love of all that is good, reword your compliment. If you want to tell me I look good, say that! Don’t make it about not “looking sick,” make it about me looking sick and also looking fabulous, because believe it or not, the two are not mutually exclusive.
  2. “You’re so inspiring, I could never do what you do!”: Okay, why? Am I inspiring because I wake up every morning and dare to live while (dis)Abled? When you say you could never “do what I do” do you mean you could never live as a (dis)Abled person? Again- I know that a lot of folks think this is a compliment, but most of the time it feels like a thinly veiled insult, and frankly, it’s irritating. Now, don’t get me wrong… I want to inspire people, I really do! But I want folks to be inspired by my work ethic, by my kindness, by ANYTHING other than the fact that I live life as a (dis)Abled woman. My existence shouldn’t inspire you, it’s no more special than yours is. Do I face different challenges than you do? Absolutely, and it’s okay to acknowledge that. But if I’m not doing something amazing (hint: my existing is not amazing lol) why do I inspire you?
  3. “The only disability in life is a bad attitude!”: I don’t even know where to start with this one, other than to just say nope, sorry, you’re wrong. I’ve had folks say this to me before, and the conversation usually goes something like this: “No way, I don’t think of you as “disabled” – you’re always so up beat and positive! You handle it with a smile on your face, and the only true disability in life is a bad attitude!” You know what that says to me? It says that the reason I’m considered “valuable” to that person is because I “stay positive” (lol have you met me?). That’s pretty gross, because someone else is not worth less than me just because they’re angry, or upset, or frustrated by the fact that they’re (dis)Abled. A “bad attitude” is not a (dis)Ability. Stop saying it is.
  4. “At least it’s not cancer!”: DO NOT. I REPEAT, DO NOT. Don’t even go there. There are so many things wrong with this statement, so let me just explain a few: (A) Cancer is awful, but it’s not the only difficult illness out there, so stop trying to silver-line the rest of us by saying “at least it’s not cancer,” because it’s super condescending and it minimizes our lived experiences. (B) Do you really think folks with cancer want their illnesses and their lives held up as the standard of The Most Awful Illness Ever™ because I’m thinking not. (C) Just don’t do it.
  5. “So, what’s wrong with you?”: I want you to think for a minute about how hurtful it would be to constantly have people – strangers – look at you, and ask this question. Sometimes, there aren’t even any introductions. No, “hi, my name is,” or “hey, how are you?” just, “so, what’s wrong with you?” I get this one a lot, and it just really hurts. I understand the curiosity, because I know that you probably don’t see a lot of 22 year olds walking around with ankle braces and a cane. But why is it your business? Why do you care, other than your nosiness? And why – seriously, WHY – do you choose to ask what’s “wrong” with me? Nothing is wrong with me, y’all, it’s society that’s messed up, thanks.

Again- good intentions a lot of the time, I know… but not so good results. So just don’t say it, okay? Ask me about the weather, or about politics, or about the sporting event that I probably didn’t watch last night. Ask me about school, or TV, or my (awesome) new haircut. Have a real conversation with me. Have real conversations with all of us!

But mind your beeswax when it comes to personal questions about my body.

– Stephanie, ECC

Some. Days. Suck.

I write about a lot of different things on this blog. Most of the time, I try to draw attention to issues I feel are important, or I talk about the progress I’ve made in my own life, or I try to teach y’all something about (dis)Ability that you may not have known about before.

Advocate & Educate… that’s usually the goal.

But the other day, after my most recent post, a friend of mine sent me a message that really shocked me. They said, “It’s amazing that you’ve gone through so much, and still manage to keep it all together all the time.”

I was baffled.

I don’t know what gave them the idea that I have it all together all the time (or at all), and I don’t know if other people read my blog and have that same thought. Maybe when I write, I seem like I have things figured out, but the truth is – get ready for it – I don’t.

Do I try to keep it together? To stay calm and composed, to use healthy coping strategies, to maintain a positive outlook, etc.? Of course I do! I strive for that!

But guess what!

Some. Days. Suck.

That’s the only way to say it. Some days just suck, and no matter how hard I try, I can’t get past that. Some days, I’ll try and have a conversation with someone, and it won’t go as planned, and I’ll say to myself, “damn it, I’m such an idiot. I can’t believe I messed that up, I can’t do anything right.” Some days I’ll get a bad grade and think, “I’m so stupid, how did I even get into University?”

I’m always my own worst critic, but some days? Jeez, some days I find myself wanting to cut, or starve myself, or just drop dead.

Some days, I lose control.

Because some days suck – and yes, some of those days are mine. I’m so unbelievably imperfect, and I do not have it all figured out. Hell, I’m not even close to having it all figured out.

Living with anxiety and depression means that no matter how much progress I make, no matter how many steps forward I take, there’s always the chance of a relapse. There’s always the potential for me to fall back into old habits and patterns, to let the self-loathing creep into my mind, to look in the mirror and see my worst nightmare.

It happens.

I start a conversation, and as soon as I send the first message, I’m instantly filled with regret and self-loathing, for no reason at all. I put on an outfit, and I do my makeup, and then I want to throw up when I look in the mirror. I make bad choices, I make mistakes, I handle things poorly.

I do not have it all figured out all the time.But what I do know… what I’ve learned?

Some days suck, and that’s okay. It’s okay to have bad days, it’s okay to relapse, it’s okay to fall into bad habits, or old patterns… it’s okay.

It happens and you are allowed to feel all of that pain, and grief, and anger. You’re allowed to be depressed, and anxious, and frustrated at yourself, and at the world. Because all of those feelings are valid, and letting yourself feel those things, allowing yourself to be vulnerable… that’s important.

It’s important to acknowledge that some days suck.

But it’s also important to remember that you don’t.

You may feel like you do sometimes… I feel that way, too. But you’re amazing, and you’re strong, and you’re loved. I promise.

– Stephanie, ECC

On Fear: Part 2

TRIGGER WARNING: This post is a kind of (maybe?) in-depth look at my anxiety, avoidance, and fear, and how it’s influenced my relationships with others. At times I go into detail about my symptoms of anxiety, panic, and depression, which could be triggering for some (again, maybe?). While I love and appreciate all of y’all for reading, I ask that you please, please put your own mental health and wellbeing first. If at any point you find yourself feeling stressed out, anxious, depressed, or afraid while reading, please don’t feel obligated to continue. If you want to talk to someone, feel free to contact me (Twitter, LinkedIn, and Facebook all allow for private messages, or you can comment on this post if you’d prefer). Again, thanks so much for reading; I am so grateful for each and every one of y’all, and I love you always xoxo.


See? I told y’all I would expand on my last ‘note to self’ on fear! Welcome to On Fear: Part 2… AKA the one where I go to a really vulnerable place.

BUT ANYWAY.

Let’s talk about fear – specifically, my fear of… well, people, and relationships, and being alone. (Yikes, right? Who does this? Who posts this on a public forum? Oh right, ME.)

If you’ve read Part 1 of ‘On Fear’ (or if you just know me), you know that I have Generalized Anxiety Disorder. I mentioned before that (for me) this means that literally everything has the potential to make me anxious at any time, and this is absolutely true. Honestly, 99% of my existence has been spent as a walking, talking ball of anxiety.

I’m not talking about frequent bouts of ‘nervousness’, either. I’m talking stomach-knotting, chest-tightening, palm-sweating, vision-blurring, muscle-tensing, head-spinning, debilitating anxiety – anxiety that often leads to severe depression, and that really screws with my already-not-nice-to-me joints.

For perspective: I have a long (and annoying) history of laryngitis. It’s something that has led me to see several health professionals over the years, including my general practitioner, an Ear Nose & Throat Specialist, and a Speech Therapist, to name a few. Essentially, according to my ENT, at times, my anxiety causes the muscles in my throat to tense up so much that I am physically unable to speak. I shit you not, at one point in high school, this lasted for 33 days. A month of being totally unable to speak, all because I was anxious. This is the life I live, y’all, and that’s only one example! Not unlike many other mentally ill folks, I’m also all too familiar with being unable to get out of bed, go to school (ask anyone from MSVU, ha!), concentrate, or even eat. I’ve been there in the past, and I still go there some days.

The point is, though, that I’m an extremely anxious person, and unfortunately, one of the things that makes me most anxious is other people.

Why, you ask?

Well, mine is a pretty standard story, honestly. As a kid, I was extraordinarily privileged. As a white kid from a middle-class, Christian family, I was set up to be successful – after all, that’s how privilege works, really. I was relatively well-liked by my peers, I got good grades, I played just about every sport I could, I sang in the school and church choirs, and for the most part, I was happy. Sure, there were some struggles along the way (most of which were related to my health – a mystery that wouldn’t get figured out until the age of 22, as y’all know), but overall, I was doing pretty damn good.

That changed really quickly when I started Junior High.

I started experiencing feelings of depression and anxiety, and over time, it spiralled out of control. I started to eat less, I started to self-harm, I became more socially withdrawn… and as this was happening, I told nobody. Even when people around me would ask, I would find ways to hide what I was feeling, because I was afraid. I was terrified of what people would think, what they would say or do. For a long time, I just didn’t know how to reach out.

People in my life started to leave. Some of them I pushed away, and others just… I don’t know, faded out of my life on their own, I suppose. It was hard, though, losing people like that, and it ended up leaving me with some pretty serious abandonment issues – issues that were only made worse in High School, and that probably contributed a lot to the whole AvPD situation (womp).

Murphy’s Law, right?

The rest can be summed up pretty nicely as follows: Bullying, exclusion, isolation… a downward spiral that led me to extreme self-loathing, self-harm, and thoughts of suicide.

I hated myself, and I was terrified to let anyone in because I had convinced myself that they would just end up leaving anyway, and that nobody was worth that kind of pain – not again.

I just wanted to drop off the face of the Earth.

But somehow, as I continued to watch the majority of the people I cared about leave, I held onto the only thing I felt I could still control: Academics.

I worked my ass off in High School to make sure I got a scholarship to University. In my mind, this was the only way I could turn things around. It was the only way I could redeem myself.

And I did… kind of.

I graduated at the top of my class, won the Governor General’s Academic Bronze Medal, and was offered a full scholarship to Mount Saint Vincent. At first, it was like a dream come true! All my hard work had paid off, and I was finally going to get my fresh start, right?

The only problem was that despite it all, I still wasn’t happy.

When I started at the Mount in September of 2011, I realized that my downward spiral wasn’t even close to being over. Over the course of those next two years, my physical and mental health declined dramatically, I gained a whole lot of weight (note: I’m only addressing this because it worsened by joint dislocations… no fatphobia allowed here, so miss me with it), my grades dropped to the lowest they’ve ever been, and I just completely lost myself. I knew I had reached rock bottom when one night whilst trying to write a paper, I found myself sitting on my sister’s bedroom floor sobbing, telling her and my mom that I just couldn’t take it anymore.

I needed help.

That’s when this amazing woman came into the picture:

Dawn McKelvie Cyr, Psychotherapist

Not to sound melodramatic or anything, but Dawn McKelvie Cyr (aka my wonderful therapist) is basically the reason I’m here today, alive and doing what I’m doing. Over the course of the past few years, she has helped me to find empowerment within myself, foster a sense of resilience, and develop some much-needed self-care techniques. She has been my shelter in the storm, my light at the end of the tunnel, and every other cheesy-yet-true cliche you could think of.

She has helped me learn how to love myself as I am – but more on that later.

As you’ve probably already figured out, when I first started seeing Dawn, I was a hot mess. I just didn’t believe that things could get better, or that I was even worth the effort to try. Somehow, though, despite my defensive and indignant attitude, she managed to get through to me, and slowly things started to improve. Over time, I started taking the necessary steps to ensure my own health and wellbeing: I started taking anti-anxiety medication, I was going to therapy every week, and I started to do things that made me feel more comfortable with who I was (like cutting my hair, for example). Eventually, the differences became more noticeable: My grades went up, I was able to do presentations at school without getting laryngitis, panic attacks became a rare occurrence, I learned how to drive a car (something I NEVER thought my anxiety would allow me to do), and suddenly, I found myself on Social Work’s doorstep.

Funny how that happens, right?

Fast forward to today, a little over a month into the first year of my BSW, and I am astounded by how far I’ve come. I’m shocked to even be saying this, but the biggest difference I’ve noticed is my ability to connect with people.

Over the course of the past few weeks, I’ve made more friends than I did in Junior High, High School, and my first undergraduate degree – combined. Do y’all know how incredible that is? I’ve been able to connect with more people in the past four weeks than I was able to in 10 years.

10. YEARS.

Do I still get nervous meeting/talking to new people? Of course! I still have moments that I’m afraid nobody will like me, or that I won’t fit in, or that I’m not good enough. What if people find me annoying? What if they make fun of my leg braces or my cane? There are so many different ‘what if’ questions that pop into my head at times… because I’m not perfect, y’all – I still doubt myself every now and again.

But the difference is, I still meet people. I still talk to them. I reach out, and I connect, and I take the chance.

Hell, the original post, ‘Note to Self: On Fear,’ was inspired by me doing just that! I had sent a message to a classmate – someone whom I respect, admire, and think is pretty awesome – and I was absolutely terrified to do it. But I did, and instead of being ignored, or mocked, or any of the things that I’ve always been afraid of, you know what happened? Not only did they respond, they did so in a way that was kind, genuine, and just… really refreshing.

Frankly, it made my day (you’re a gem, and I’m a sap #sorrynotsorry).

The point is, I never could have done that before, but now I can… and that’s incredible to me. It’s amazing to be able to meet people and interact with them without feeling like I’m putting up a front. I can just by myself, and that’s enough.

Thanks to Dawn, and thanks to this BSW program, I’ve been able to learn a really important lesson about my fear of people/relationships, etc.: I don’t have to let it stop me from being with people, from getting to know them and from forming those bonds. I don’t have to let it act as a wall between me and everyone around me. I don’t have to walk through life alone – and let’s face it, life’s a hell of a lot better when you don’t do it all by yourself.

So, you know what? Fuck being afraid of people. Sure, some will leave… but the ones who stick around, and who accept me for who I am? There’s not a doubt in my mind that they make it worth it.

It’s people like that classmate who make me want to reach out, no matter how scary it can be.


To end on a positive note, I’ll say this:

Dawn, you have been my rock through all of this, and I am so unbelievably grateful to have you in my corner. You’ve helped me to essentially recreate myself and because of you, I am confident in and proud of who I am. You’re amazing, and I wouldn’t be where I am today without you. Thank you so, so much.

To all of my classmates, if you’re reading this: Thank y’all so much for being such kind, welcoming, amazing human beings. I feel so blessed to have been given the opportunity to experience this journey with you, and I am so grateful that I’m at a place in my life where I can really get to know y’all along the way. You have given me so much already, and words cannot adequately express how happy and thankful I am; I couldn’t ask for a better group of people to study with, truly.

NOW. I know this post was a long one, and it was extremely emotional for me, but it was something I felt I needed to share with you. It’s all about embracing vulnerability, and I hope that you all can find ways to do the same in your lives.

Thanks for reading, y’all.

– Stephanie, ECC

PS. If you think you could benefit from talking to a therapist, I really, strongly encourage you to reach out to Dawn. After her recent move to Toronto, she’s incorporated Skype into her practice – something that has allowed me to keep seeing her, even from here on the coast. She is a kind, compassionate, knowledgeable woman who is beyond dedicated to ensuring the success of each and every person she works with. She has been a blessing in my life, and I’m confident that she can make the same difference for any of you who may be struggling. So again, if you’re interested in talking to someone, and you think Skype may be a viable option for you, I can promise you that Dawn is the best of the best. All her info is on her website (including her email) so give her a shout!

Note to Self: On Fear

For the record, since I’ve posted two more ~serious~ posts lately, this one is more of a ‘note to self’ kind of thing, and it’s going to be short and sweet.

I have Generalized Anxiety Disorder, and I am anxious about literally everything, almost all the time. Even the tiniest things can send me into a panic attack sometimes, y’know?

But every now and then, I have moments where I do something that terrifies me, and sometimes, it turns out really great…

So, note to self: Talk to people, even when you’re afraid to, because sometimes they’ll reply, and it will make you smile. Hell, it’ll make your whole damn week.

It’s worth it.

– Stephanie, ECC

PS- I will probably expand on this at some point, but tonight I’m going to try doing this new thing called ‘sleeping’ – weird, I know, but I’ll keep you posted on how it goes 😉

Dirty Words: Why ‘Disabled’ Isn’t One

DISCLAIMER: Identifying language is a personal choice. This is mine, but I’m not anyone’s ~token disabled person~ so make sure you check in with other folks to see what language and labels they prefer 🙂


Now, let’s get real.

Every time I hear the, “but people with disabilities are people first!!! Focus on the person, not the *whispers* disability!!!” speech, I want to vomit.

Sorry, y’all, but it’s true.

It just makes me feel gross, you know? Like drinking spoiled milk, or getting kicked hard in the stomach.

I know that most of the time, the people who use person-first language have good intentions. They often feel like they’re doing us a favour by reminding other folks that we’re not strange alien beings from another planet – no, we’re people, damn it!

But here’s the thing!

You shouldn’t need to be reminded of my humanity. You shouldn’t need someone to point out to you that I’m a person and not a list of diagnoses or something. In fact, the only reason you would need that reminder would be if you didn’t already know, and if you don’t KNOW (and/or believe) that disabled people are, in fact, people… well, then we have a much bigger problem on our hands (and, newsflash: it’s probably gonna lead back to a little something called eugenics, just saying).

Unfortunately, it would appear as though a lot of folks do seem to need a reminder about our humanity as disabled people… either that, or they just think ‘disabled’ is a dirty word (but more on that later). So, they continue to use person-first language in order to somehow preserve our humanity without ‘reducing’ us to just our disabilities – as if calling us disabled somehow erases every other aspect of our identity (yikes).

It’s fascinating, really, considering nobody seems to worry one bit about whether or not my identity is in tact when I refer to myself as a white person, or as Canadian… Notice how the language works there, by the way? White person not, person who is white, and Canadian rather than a person from Canada… but hey, maybe that’s just a coincidence, right?

Except it’s not. The difference is that being white, and being Canadian? Yeah, those are both considered to be good things! Being disabled, on the other hand… not so much. People still – whether they want to admit it or not – look at disabled folks as less than, so actually calling someone disabled? Well, that’s an insult! It’s stripping them of their humanity, because disabled folks aren’t human!

See what I mean?

It’s so easy to just not think about the implications of person-first language, because on its face, it would appear as if it’s a great thing. After all, disabled people SHOULD be viewed as people, and we SHOULD be treated with dignity and respect… right?

The problem, though, is that doing that shouldn’t have to involve minimizing and, in some cases erasing our disabilities – because guess what: For a lot of us, including me, disability is an integral part of who we are, and it just can’t be separated from us.

So, let me just ask y’all a question: Why is it that people are so adamant that ‘disabled’ is a dirty word?

Here’s my answer:

I believe that a lot of people – too many people, actually – have a fundamental misunderstanding of what I mean when I call myself disabled. I know that may seem strange, but stay with me for a second.

Traditionally, society has adhered to what’s known as the medical model of disability. Now, the medical model basically says that disability is caused by a physical (or mental) condition that is an intrinsic part of the individual. What does this mean, you ask? It means that the medical model thinks whatever the medical diagnosis is, is what causes a person to be disabled. In my case, for example, the medical model would say that Ehlers-Danlos Syndrome is what disables me.

I’m here to call bullshit on the medical model.

Instead, I think we should talk about the social model of disability – because that right there? That’s my shit.

Unlike the medical model, the social model of disability believes that it is not the impairment that causes disability, but rather, it’s society, and the way it’s structured. Basically, this means that according to the social model, I do not have a disability. It’s not something I went and picked up at the store that I now possess, and it’s not something I was born with, either.

No, quite to the contrary, the social model would argue that I am disabled… by a society that is not built for me, since I don’t fit into the nice, shiny little boxes that are ‘able-bodiedness’ and ‘saneness’. I’m disabled by society’s unwillingness to adapt and accommodate anyone who isn’t considered physically and mentally ‘fit’ and ‘acceptable’ (ew, gag me).

So, basically, it works like this:

I do not have a disability… I have Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndrome does not disable me, society does.

See the difference?

Don’t get me wrong- I know there are probably some folks out there who will still prefer to be called people with disabilities… and that’s fine! I’m not here to police the language used by others in my community, because it’s not my place to do so. I’m just here to shed some light on the implications of non-disabled folks using person-first language, and to show y’all why it is not, and will never be the right fit for me.

Either way, though… regardless of how you may identify, let’s all agree on this: There are plenty of dirty words out there, but ‘disabled’?

It’s just not one of them.

– Stephanie, ECC

Who Am I?: Loss, Growth, and Acceptance

Okay, y’all… I just finished writing the very first paper of my BSW, and it’s really got me thinking a lot. To put it briefly, the paper was about how I feel my identity has been shaped and influenced by being a member of a specific community of my choosing.

I (unsurprisingly) chose the (dis)Abled community.

When I read the assignment description – in fact, even when I first started writing the paper – I thought it was going to be a walk in the park for me. I thought it was going to be easy, because I know just how profoundly (dis)Ability – and, more specifically, the (dis)Abled community has influenced my life and identity.

It’s made me who I am.

But as I started writing, I found myself struggling – not with the paper itself, necessarily, but with the way it was making me feel.

Now, that may seem strange given that I talk about my experiences as a (dis)Abled woman online and in real life on a regular basis, but here’s the thing: In order for me to critically reflect on how this community has shaped who I am, it means looking back on who I was before I became a member of this community. Before I became (dis)Abled.

I’ll be honest, y’all… that’s just not something I think about a lot these days, y’know? Frankly, I thought I was past the point where looking back would be an issue for me, so I wasn’t expecting that to be as hard as it was, and I most certainly wasn’t expecting it to hurt.

But it did, because no matter how much time goes by, and no matter how much I’ve embraced who I am (and I have!), sometimes it’s just hard to look back and remember what life was life before my body started to (literally) fall apart. It’s hard to think about how different things would be if I hadn’t had to give up soccer, if I could carry my own groceries, if I could walk without splints and a cane.

It’s just hard, and I hate that it is, because I’m proud of who I am, y’know? My experience with (dis)Ability, and the (dis)Abled community as a whole, has made me a better person. I know that sounds cheesy and stereotypical, but honestly, it’s true. I’m more compassionate, more empathetic, less self-centred… I’m more knowledgeable about social justice and intersectionality, and I’m more invested in advocacy and the wellbeing of others (and myself, too). There are so many things – wonderful things – that have come from my being (dis)Abled, and never in a million years would I change it. I would not ever erase my Ehlers-Danlos Syndrome, or any of the other things that have come with it, as hard as that may be for some folks to believe.

But I would be a liar if I said there weren’t moments when I wish for legs that could stand on their own. For hands that could write, and hold, and lift. Moments that I long for a soccer field, or a track, or a gym floor. Moments that I wish I could go out with my classmates and not have to worry about… well, everything.

There are moments that it hurts to be this version of myself, and I’m not sure if those moments will ever stop, which scares me.

In the end, though, what my paper taught me is this: For now, this is me, and that’s okay.

That’s enough.

– Stephanie, ECC