My Research Methodology & Design unit is over, but I still found time to listen to some autobiographies during the last four and a half weeks.
Labels… They’re everywhere.
My experience has mostly occurred in a clinical setting where people have been or are in the process of being diagnosed with an injury/condition/illness. I’ve witnessed behaviour changes after a diagnosis because the pain or disease now has a label.
When covid hit in 2020, I started documenting my recovery from a lumbar disc injury. You can find it under the hashtag #ICareyAboutClare. Based on my symptoms, we can assume that it was herniated, but I chose not to get an MRI because it would not change my rehabilitation.
It’s common in my clinic where people tell me they’ve had scans and have bulging discs in their back. When I ask how long ago it was, they tell me a couple of years. Sometimes, it has been as specific as five years. These patients have held themselves back because they were told five years ago that they had a disc bulge; on the other hand, many of us could be walking around with undiagnosed disc bulges and no pain, or they have pain and no disc bulge. The association between pain and damage has gradually been debunked. A diagnostic label can increase fear regardless of how severe the symptoms are.
My rehabilitation was a learning curve for myself and my coach; I told her, “we won’t know what I can do unless I try. My body will say yes or no”.
Sometimes we need to modify our activities (graded exposure) which may include not doing certain things for a while, but I think if you love it/enjoy it and it’s not going to threaten your life, keep doing all the things that make you tick!
When Selma talks about labels, she refers to the one she was given from birth, “mean baby”, because she was born with a snarl on her face. She was told she was a mean baby, and that is what she believed herself to be. She spent much of her life living up to that label, fighting with her sisters, lying, and getting drunk at age 7.
“Labels are sticky” - Selma Blair.
Selma was diagnosed with MS in 2018. However, she described symptoms of MS as early as 5 when she had intense leg pain, had to drag her leg to walk, and had a history of vision problems.
For Selma, an earlier diagnosis would have helped to understand her pain and body and access appropriate medication. Unlike the label "Mean Baby”, MS would have positively impacted her life.
Interestingly, Selma was advised by her doctors not to go public about her diagnosis because they feared that it would result in losing work; “she’s an actress. If people know she has MS, they won’t hire her”. I’m glad she ignored them. She received nothing but love and support and is a big advocate for MS and chronic disease.
Different, Not Less.
Thank you, Chloé Hayden! Different, Not Less is informative and validating, and in the words of my fresh research methodology and design brain, excellent qualitative data.
The following definitions are from google dictionary.
Neurotypical: “Not displaying or characterised by autistic or other neurologically atypical patterns of thought or behaviour.”
"Neurotypical individuals often assume that their experience of the world is either the only one or the only correct one."
Neurodivergent: “Differing in mental or neurological function from what is considered typical or normal”.
Typical: “Having the distinctive qualities of a particular type of person or thing.”
Divergent: “Tending to be different or develop in different directions.”
Spectrum: Used to classify something in terms of its position on a scale between two extreme points.
Who decides what typical and divergent behaviours are? If every human is different, doesn’t that make us all divergent? Are we all neurodivergent on different levels of the spectrum?
The Decline of Mental Health
Diversity: (google dictionary)
The practice or quality of including or involving people from a range of different social and ethnic backgrounds and of different genders, sexual orientations, etc.
The state of being diverse; variety.
“My need to self-regulate was left unattended and silenced. I firmly pushed away what my mind and body desperately needed to do for fear of being further bullied and ridiculed. However, instead of these needs disappearing and me magically becoming ‘normal’, as was so desired by those around me, they turned into pent-up anxiety, depression and dysregulation that would end up bubbling over to the point of meltdowns.” - Chloè Hayden.
Depression and anxiety are at an all-time high; suicide rates are devastatingly high. Campaigns such as RUOK and fundraising help to increase awareness and resources, but what if we started accepting everyone as they are? What if we let people be who they are without shame and judgement? Understand that we aren’t all the same, and goodness, how boring would the world be if we were?
I often think back to when Britney Spears shaved her head in 2007; the media gleefully published photos, “Britney Spears has gone crazy”. It resulted in a lot of laughter at Britney’s expense. If that wasn’t a cry for help, I don’t know what is!?
“Why are we then determined to change the child rather than the world around them? Why do we validate the wrong just because it’s normalised and ostracise the right just because it’s not?” - Chloè Hayden.
I believe we can all make a difference in the fight against mental illness and suicide.
We can all work to make the world safer for people to be their authentic selves.
Telling our stories, vulnerability isn’t a burden when it is shared. Vulnerability is contagious, and it takes a brave person to start. That bravery gets passed on to the next person to share and the next and the next.
Listening to others’ stories increases compassion and understanding and can help develop emotional maturity (I speak from experience).
Normalise being different, having negative emotions and struggling, and maybe, just maybe, the people who feel trapped in a deep dark hole will reach out to somebody who will shed some light they cannot see.
“When you are sad, you don’t necessarily feel like you are also funny, and sharp, and clever, and kind. But you still are. You don’t have to feel like something to be it." - Chloè Hayden.
I think labels are best suited for jars, bottles, boxes and nutritional information (basically anything consumed or stored), not people.
Only got across to reading this just now. Labels suck, if I think I listened to labels I wouldn't have done anything I've done in the past year in running.
If everyone is the same, the world would be a boring place.
Ps: I f%#*ing hate labels and believe too many people put labels on themselves to make themselves feel comfortable that they can’t change and don’t have to improve