And recently on your Facebook you decided to share how you have this disease. Apparently it was your first time ever publicly revealing it in the 10 or so years you’ve had it. What changed? What made you suddenly want to share that with everyone?
Good question. I only pause because I’m horrified to think it was the first time I’ve really publicly shared that I struggle sometimes. First and foremost the premise behind the post was that I noticed that my Facebook timeline was becoming a bit of a highlight reel. Completely unintentionally. However, what I stand for is the opposite of that. I’m trying to support the message that as young people we can absolutely work together in banishing this pressure to be perfect – online and offline.
I monitor my disease by having a tri-monthly medical treatment. During treatment week things can get really tough. I battle exhaustion and fatigue. My mental health will slip. I’ll get really hard on myself. Let me tell you, as someone who’s a founder of an anti-bullying organisation, you’d be horrified at the twisted shit I tell myself! I feel like I’m failing. I feel like I’m not enough, I’m not doing enough, I’m not productive enough. On the other hand I’m like, I’m not sick enough. I’m in this constant push and pull between not being enough. And the other part is hiding it all, not sharing that with people. I constantly feel like I’m letting people down because I have to cancel plans or I have to say sorry. The idea behind the post, and I will preface it by saying that it was a silly smiling bathroom selfie of me with a drip. So it wasn’t a morbid post at all. I want to be so much more visible as someone that does battle with fatigue and exhaustion and chronic illness. My life’s not perfect and I definitely don’t want to portray my life as perfect.
Thank you for sharing that because on so many levels I can entirely relate. My social media presence can be deceiving too. I competed in body building, so one would think that I’m completely healthy and able bodied and…
I’ve seen your body building posts. They’re phenomenal!
[Laughs]. Another chapter. Sometimes my life looks amazing. The thing is, we’ve still got to deal with our own hardships. We can’t really reveal them before we’ve formed an understanding of them ourselves, right? When I was 20 I got diagnosed with secondary amenorrhea, which basically means I stopped getting my periods. I very soon developed symptoms of menopause. It was super overwhelming. I got hot flushes! I was in Montreal so I’d stand in the middle of the snow and it would just melt. I was moody, I got depressed and then of course like you said yourself it all tumbleweeds into mental health issues because you start drawing all these narratives about yourself not being good enough, not sick enough, not well enough. Six years later I find out that my bones are now disintegrating and I’m on the edge of osteoporosis at 25. I’m hoping it can be rectified, so it’s not necessarily a chronic illness. However, I am dealing with this kind of expectation that as a young person I’m supposed to be healthy. Adults will often say to me, “Wait until you get to my age!” And I’ll be like, “I have, I’ve been through menopause!”
So this ties back to when you said you’d learnt a lot from juniors within your work. Something I’m passionate about is never making assumptions about someone’s knowledge or life experience based on how they look or their age. I want to ask you a few questions…
Before you do…
Can I say thank you for sharing that too. Yeah, that’s part of who you are. What I have learnt as I’m slowly but surely leaning my way into being more visible is that this is part of who we are. I can fight and I can do things in spite of my Castleman Disease, but being honest about it is also pride. I’m a survivor of Castleman Disease. I live my life with it. It means I’m resilient. Part of living with a disease is digging deep and sitting in the mud. I’m grateful for the learnings that I’ve had during those times. I just want to thank you for sharing that and say, that sounds really fucked.
I think we need to acknowledge that too. That it’s not like, “It’s okay, we are our diseases!” But also like, “That’s fucked.” “Fuck you disease.” I sound angry right? I love my anger. I love being an ‘angry woman’. I’m so passionate now about being angry. I used to be so ashamed of my anger as a child. I used to be afraid of it. But now I can channel it into something. I have such great momentum and power behind me, as long as it’s honest. Anger for me acts as a clue for something that I care about, it’s a motivator, and in times like this it’s a relief. It’s a release even. So yeah, I want to say, “fuck you” to the disease and also thank you for sharing. And also let’s make a pact to be more visible.
Are you down?
Yeah! [Laughs]. Let’s shake on that.
What’s occurred to me is that we’re so obsessed with jumping from the pain to finding a solution. While that may work in some instances it definitely doesn’t work for chronic illness. So sufferers may find that there’s this extra pressure. The very fact that we’re framing illness as a problem and stigmatising it is the problem. Therefore, rather than asking, “What’s helped you overcome it? What’s kept you positive?” I want to ask, “How have you honoured your experience?”
First I want to be clear, upfront and honest with you. I haven’t honoured my experience. This is the new me. Fortune favours the bold, to be bold you have to be brave, and I know that to be brave you have to be vulnerable. As I said before, I was diagnosed when I was 18. I’d just finished high school. I was ready to unleash on life. I had a really scary misdiagnosis of cancer that involved operations and hospital. After I was in the clear for that I discovered that I had this weird disease that no one had really heard of. I ignored it for a long time until I couldn’t ignore it any longer because I started to re-experience it. It was at that point where I had a huge revelation, “Oh my God, this is actually for life!” I was like, “I’m going to have to change.” So yeah, I have had to learn ways to not just deal with the tough times but also ways of planning my life out a little bit. Like, I’ll be having babies at some point. One of the things though, a practical takeaway, is to say shit out loud. So whether it be the Facebook post, now that was a pretty grand gesture even though it was very much on a whim. I just had a bit of a word vomit and it created this impact. Sharing those thoughts out loud with people, having that honest conversation of, “Hey, here’s where I’m at,” so that the people can actually help you. Which is another thing that I’m learning: I can’t do everything on my own. When we stay inside our heads with this stuff, it only goes to the negative. It’s really hard to pull yourself out of that dark time on your own. We need to ask for help and say it out loud. So that’s something that I’ve really learnt, and also acknowledging to myself that I’m allowed to be sick. That whole, “I’m not sick enough.”
You’ve made me think of the profound impact that this narrative of anti-ageing and infallible beauty and body has on our society. It gives people, particularly women, an image of how we should be. Like I said earlier, this idea of if we’re young we should be healthy. This is influenced by capitalism, the media, what we see on TV. But what I noticed on your Instagram story recently was that you were sharing a few shots of the behind the scenes in hospital.