Updated: Dec 21, 2019
When living with chronic illness, one will run into many telling you positivity is the answer. So many people have an attitude that if one has a positive outlook – their outcome will be better. Now this might not be entirely false. It’s true that adding a ‘victim mentality’, or an inherently pessimistic attitude may close one off to opportunities around their health. Make them unwilling to try new ideas, or less motivated.
However – simply refusing to see the hard parts of living with chronic illness and refusing to allow yourself or someone close to you express these hard feelings is not going to help. This is something that has come to earn a name for itself. It’s called toxic positivity. It’s the name we give the kind of attitude that doesn’t allow someone to ever express pain, feeling down, or even the acceptance of their illness. The name we give to people whose positivity often stretches to denial of the situation in front of them and causes a person with chronic illness to feel like they need to hide their true feelings.
Here’s a graphic that circulated social media which explains the difference between being supportive and displaying toxic positivity.
I hope that the posts I have made so far have avoided displaying anything that could be perceived as toxic positivity. I often feel pressure, particularly around family, to be more positive than I feel. And it’s not as if I think they are even particularly ‘toxic’ with their positivity. However, if you’re anything like me, you will be extremely sensitive to seeing people’s faces drop when you tell them bad news, or even just tell them that you’re not feeling great. Especially when it’s someone close to you. When those people then reinforce that need to be positive by engaging in this toxic positivity, it makes it even harder to be real with them.
So – in the name of ending toxic positivity – this post might have a little more of a sombre tone. I want to be real. Yes, I might avoid the phrase ‘suffer’ and I might give off an impression of happiness a lot of the time. And that’s because for the most part, I know that I live a pretty damn good life. I have a roof over my head. I have a partner and now two big families that love me to bits. I can still work. I can still walk. Be it with a mobility aid. And I still have real, tangible hope for improvement of my health. I know full well that having all of that is a privilege, and that I am better off than so many.
But – there was a life I had before this.
A life so full of opportunity I took it for granted.
And there are so many things I miss.
Here are 5 that play on my mind every day:
It might seem like a small thing, but I think about sprinting – whether it be running at full tilt, swimming in a race, or boosting it on a bicycle, every day. I think abut the feeling of the air ripping through my lungs and my muscles going into overdrive, faithfully making me go faster and never betraying me. I used to be fit. Despite the fact that my condition is genetic and starting to affect me even then, I was strong. I could go fast. And I felt good. The EDS just hadn’t reared its ugly head yet. I loved that feeling so much. Sometimes I even dream about being in a pool with my old swim team and my old coach, and racing. And those are the best dreams I have. It’s like a break from my broken body. I’m free for the night. And then I wake up.
I used to be a swim teacher. Most swimmers will end up doing this at some point! I would spend 5 straight hours in a pool or standing on the side, my full attention focused on nurturing the skills of young swimmers. It wasn’t exactly my long-term career plan, but I loved it. Even the little tots. I loved the feeling when a 3-year-old who feared the water would finally allow me to let them go and float on their own. Or when an older kid in the big pool finally mastered the art of the tumble-turn without filling their nose with water. The joy on their face was priceless. Now – I couldn’t even hope to do one demonstration of a breast-stroke kick. And that hurts.
Around the time I taught swimming, I was also a Lifeguard. It’s how I met my partner. Together, we resuscitated an 11-year-old boy and a man in his 80’s. Both would’ve died without our help. I performed I-don’t-know-how-many rescues and even more first-aid fix-ups. The memories of that job are mixed, but the good ones are wonderful. The way I was able to use my body and my skills to save people from danger, fear, or certain death was so fulfilling, so empowering. It’s a unique feeling that only front-liners know, that I’ll likely never feel again.
As I have said – I can walk. I use crutches and I can’t go very far, but it is better than nothing. I so dearly miss the freedom of just being able to wander out of the house when at a loose-end and walk around the block or through the park. Or having the option of being able to walk up and down the ridiculously gorgeous beaches of West Auckland. I don’t know if you guys have heard, but crutches and sand don’t mix. Walking for leisure was always something so cathartic for me. Such an effective stress relief without being too hard on my body, even when the POTS had started to kick in. Now I’ve lost that as well, there are very few options left to me. It’s extremely frustrating.
The first time my illness reared its head, I was in medical school. And after that, for some years when I was undiagnosed and semi-healthy, I still felt like all my options were open. I doggedly pushed myself to work full time, to try studying again, to keep moving forward until my body said ‘enough’. Now – I’m still working, but it doesn’t feel like progress in the way it used to. I graduated from high school a high achiever whom everyone expected big things from. And none of them have come to fruition. My partner and I had plans for me to be the main breadwinner and for him to stay home with our future-dream kids. Now, at 24 and 27, we’re struggling to support just ourselves. I never thought that would be me. Call it cocky, but I always thought I was heading towards something bigger. I just had big dreams. And here I am. I miss my ambition.
So – there they are, the top 5 things I miss. I don’t share these much. Don’t talk about them. But in the name of ending toxic positivity, please share this post. Comment with what you miss. Let’s be real people.
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