Before we dive in let’s recap how to speak about disabilities. The key thing to remember is it is always best to use the language the person with lived experience chooses.
For some, this will mean avoiding defining people by their disorders and instead focusing on putting the person first, not the disability (think person with diabetes or person living with epilepsy). This is best practice if you are unsure of what the person prefers, but it is not a rule. There are folks who identify more closely with their disability being stated as a noun instead. For example, diabetic or epileptic. More resources can be found in the Editorial Standards Guide but when in doubt, ask!
Some food for thought
In 2017 Statistics Canada reported 6.2 million Canadian’s, aged 15 years and older, had one or more disabilities. That’s one in five Canadians.
But, if I asked you to think about how many people you come across in your daily life who you think “ah yes, they are living with a disability,” I think we can agree you wouldn’t come to the conclusion of one in five.
The above is not an endorsement to go about your day trying to label and categorize people as you meet them. It is however an acknowledgment that subconsciously labeling people is human nature, and also a warning that it’s not very accurate when it comes to disabilities.
Some examples of conditions that could lead someone to identify as having an invisible disability include: autism, depression, Crohn’s disease, anxiety, diabetes, attention deficit hyperactivity, dyslexia, HIV, multiple sclerosis, bipolar disorder, chronic migraine, asthma and so many others.
A colleague shares his story
Eight years ago Conor MacPhee, Manager Violence Prevention & Wellness, says his life was not going according to plan.
“I became increasingly more aggressive, short tempered, constantly fearful, anxious and preoccupied fighting a swirl of negative thoughts. I was not myself. My relationship with my partner was falling apart, and my friends and family were growing increasingly concerned.”
When confronted about these drastic changes in his behaviour Conor says:
“I brushed them off. I was aware I was behaving differently and struggling but I always figured it was the result of external factors and stressful situations. Then, as my partner and I were making an attempt to reconcile, a close friend said “it really sounds like Conor is going through menopause.”
The absurdity of the statement pushed Conor to go to his doctor. “I wanted to prove them wrong and make the point once and for all that I was just stressed,” he said.
Conor didn’t get the results he was expecting.
“My doctor tested my hormone levels and when the results came back, said that I had almost no testosterone in my body. A disorder called hypogonadism. But I didn’t believe him, I thought he had to be wrong. If anything, in my mind, the symptoms I was showing had to be the result of too much testosterone. Then the second opinion came back with the same diagnosis. This condition is why my life had been turned upside down.”
After some strong self-advocacy (in response to medical gaslighting), Conor now takes weekly testosterone injections and will continue to do so for the rest of his life to help manage his symptoms.
“It’s been a game changer. With medication not only am I able to manage my emotions and thoughts, but my relationships are in a much better place as well. I do however have to go in for regular blood tests to monitor for risks of testosterone therapy for normal aging, which also includes an increased risk of heart disease.”
Breaking down the stigma
Being disabled is often stigmatized, with some able-bodied folks even afraid to say the word and opting instead for offensive alternatives like “differently abled”. Disability is not a bad word.
“This illness or bodily anomaly that impacts my every day life is so stigmatized, I was worried people would make fun of me for it” says Conor.
When asked what he thinks the steps are to reduce the stigma that surrounds living with invisible disabilities, he shared.
“Speak about it anyway. The more I’ve shared the more I’ve met other people who are also struggling with the same condition or something completely different. Be open to hearing about the lived experience of others and be open to learning. People in health care in particular have a tendency not to share what they’re struggling with. Caregivers spend their time worrying about others but they need to look after themselves too, they need support.”
We want to hear from you
Disabilities are unique, they are dynamic, some are visible and others are not. Identity and self-disclosing how you identify with certain labels, like disabled, is a personal and complex journey. Your experiences, and the experiences of others are valid.
Do you live with an invisible disability? Would you like to anonymously share your experience working at PHC and what you wish others knew about what it’s like to be disabled? We’d really like to hear from you. Fill out this anonymous submission form and we’ll post a follow-up article sharing the responses we receive.
Resources and Information
Interested in learning more about disabilities? Check out these resources.
Providing the best care to the people we serve is dependent on our own health and wellness. We are working to deliver a comprehensive Staff and Medical Staff Wellness Action Plan, to help us create a healthy and safe work environment where everyone can flourish. We would so value your feedback on current wellness resources available to you – please take a couple minutes to complete this survey. And if you have a wellness idea that could make a big difference to you and your colleagues, please send it to Ideas: Forward. If you have questions about this plan or feedback on wellness at PHC, please be in touch: missionforward@providencehealth.bc.ca.
