[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