evolution of a progressive disease
Image Description: A 6-photo Instagram (IG) story prompt of Kae from 2018-2023, with the caption “RBF (Resting Bitch Face) is unfortunately permanent but everything else became softer”. She is referring to her hair colour, makeup, and jewelry change over the years.
Image Description: A screenshot of someone replying to my 6-photo evolution IG story prompt, saying “RBF in 2023 looks happier than previous years”.
For context:
In 2018, I was healing from a traumatic relationship, jumping from home to home, spending a lot of time in my car, escaping the harsh reality of living off ODSP and navigating an inaccessible job market — all the while dealing with #ableism, my declining health & mobility. I felt so alone. I wasn’t sure I would ever see better days.
In 2019, I started to share my story and advocate for rare diseases and the injustice People with Disabilities face. I was learning to find my voice. I was also finally able to find a long-term home that I shared with my new partner. Things were starting to look up.
In 2020, COVID-19 was declared a pandemic and we were in lockdown. My relationship ended during this time but I was lucky to keep the home and they moved out. I had no idea how I would afford things alone but I was grateful to not be on the streets. I no longer had my car to escape to either.
In 2021, I make it work as I go and get the hang of living alone; finding ways to live independently. I still kept my social circle small to avoid catching COVID. I spent the year surviving & adapting to my new life alone.
In 2022, the lockdown is lifted and everyone moves on. Not me though, I still have to live in isolation bc of my disability & not having money. Living alone also meant not having support whenever I needed the help. The reality of my declining mobility takes a toll on my mental health but at least I’m not homeless.
In 2023, I’m still here—making things work. My disease is still progressive, my mental health still wavers but I’ve got a stable home that I’m grateful for every day and that’s where I can continuously heal, rest, and grieve. I take it day by day. I’m so proud of myself. ♥️