This post is the third of a collaboration series with the amazing Lori (@budtobloomlori). Lori (they/them)is a disabled model, and creative who uses the mediums of writing and art both as an outlet, and a way to raise awareness about life with chronic illness. Some of the conditions they live with include Ehlers-Danlos Syndrome, PoTS, MCAS, and mental illness - all of which have been discussed in detail over the course of their 3 years as a writer. They recently created a petition addressed to the UK Parliament regarding eating disorders, and are still taking signatures. You can find Lori's instagram here and their latest blog post here!
When I first fell ill, I did so following the onset of puberty at age 13. I had struggled with symptoms of my condition all my life, and with hindsight, it’s clear to see how my disorder would manifest and develop over time; despite being considered a healthy child. But I have a genetic disorder that affects collagen, so the combination of my increased estrogen levels, a significant growth spurt, and genetic abnormality, wreaked havoc on my body - and subsequently my mind - which has motivated me to advocate for mental health awareness from a disabled perspective.
A lot of people are born with their disabilities, they have been present since birth - and many also acquire disabilities; and as someone who technically acquired my disability despite being born with the genetic mutation, I can only speak from this point of view; so please keep this in mind going forward.
Long term health conditions, and disability can be difficult to manage for a plethora of reasons, and the feelings of distress and loneliness are felt throughout the disabled community. In this blog post we shall be looking at some important mental health figures which serve as a reminder that poor mental health and long-term health conditions go hand in hand - and not just because of the difficulties associated with symptoms.
My education was majorly affected as I was in too much pain to go to school, my school was inaccessible and I had to drop many subjects because this was a time before the online learning programs we see today, but after talking to my friends and fellow spoonies in the chronic illness community, I’ve discovered this is a widespread issue, which is shocking considering the importance of education, particularly during childhood.
This caused a significant level of stress and pressure upon me, especially considering I was a driven and dedicated student who still to this day has a perfectionist streak and bold goals. Goals which I lost sight of because they felt entirely unachievable, my health was deteriorating fast, I was losing friends because the socialization and convenience weren’t there anymore, and people moved forward. I felt unwanted, unlovable, unattractive.
People I went to school with made up all sorts of rumors about what happened to me for the sake of gossip, but no one reached out to ask if I was okay. It was like my illness was an elusive, mysterious and salacious slice of drama pie, and not the very real and valid experience which I myself had no answers for. It was the beginning of many instances where my disability and symptoms were talked about like a scary campfire story, disturbing in nature.
The shame which resides within our minds caused by internalized ableism, the fear of being a disappointment to our families, the distress we feel when we lose the abilities, we’ve come to rely upon to fulfill our needs for independence - it’s exhausting, and I have personally found myself mistaking my frustration, suffering, and gr