Self-Advocacy Q&A with an Anonymous Advocate
Anonymous
I have 16 years of HR experience with 8 of them focusing on benefits and leave administration.
“It’s okay to say no and stand up for yourself. Your health—mental and physical—is the most important thing, and if you’re not supported, it’s okay to move on and find a place that will.”
We’d love to get to know you! Please share a bit about yourself, your diagnosis journey and the invisible condition/s you live with.
In the Fall of 2023, I was in an auto accident. On my way to work, I was in construction traffic and was rear-ended in a multiple-car accident.
From the accident, I suffered a concussion, and a torn artery, and my entire right side had weakness.
Two days after the accident I had a TIA (also known as mini-stroke) due to the torn artery. I continue to have sound/light sensitivity, and post-concussion syndrome, and my artery is continuing to heal over a year later.
Definitions:
Post-Concussion Syndrome (PCS): A complex disorder where symptoms—such as headaches, dizziness, and cognitive difficulties—last for weeks, months, or even longer after a concussion. It’s thought to be due to lingering effects on the brain from the initial injury.
Transient Ischemic Attack (TIA): Often called a "mini-stroke," TIA is a temporary period of symptoms similar to a stroke, caused by a brief lack of blood flow to the brain. TIAs don’t cause permanent damage, but they are warning signs for potential future strokes.
Torn Artery: A tear in the artery, also known as an arterial dissection, can disrupt blood flow and lead to complications such as strokes or TIAs. It can result from trauma, like a car accident, and may require extended time to heal.
How would your friends describe you and your personality?
Fun, outgoing, helping others, loves to be out in nature.
How has the invisible condition altered your life?
Due to my restrictions and sensitivities, I have not been able to do much outside of my house.
I am not able to be in groups of people, go into the office, family celebrations.
I also cannot be as active as I once was with working out, hiking, or remodelling our cabin.
Are you comfortable sharing about any stigma or discrimination you’ve experienced due to your condition?
The organization I was working for when I got injured, at first, was somewhat supportive and allowed accommodation without additional paperwork at the start. Once I had paperwork from my care team to start the official accommodation process, everything changed.
My former boss and I were in charge of the leave and accommodation process. My boss, Human Resource Business Partner (HRBP), and our Chief Human Resource Officer (CHRO) (all of who I worked with constantly and were on the same team) completely shifted their tone with me and were not supportive at all.
All of a sudden they were demanding me to be onsite even with my restrictions and would continue to push my care team asking them questions that were borderline inappropriate. When I gave my notice and said that my health was the most important, my boss, HRBP, and CHRO were not supportive and thought they could pressure me to stay.
Having multiple conversations with them they could not understand why my health was the most important and I would not change my mind and continue to stay in a situation where I was not supported (yet they always talked about how important health is).
What does self-advocacy mean and how have you managed to advocate for yourself? Any advice to share?
Self-advocacy means to me, speaking up for yourself and getting the support that you need. I have continued to push to find a care team that will listen to me and help to build a care plan that will actually help me. I have also surrounded myself with people who really do care about me as a person and don't push me into a situation that I am not comfortable being in.
If someone is struggling to advocate for themselves, what advice would you offer them?
Find someone to help support you, having someone in your corner can help to alleviate some of the stress weighing down on you.
What motivates you to disclose your disability despite the courage it requires?
Being a voice for others who may not be comfortable speaking about their own disability. The more we talk about it the more it will be accepted to set boundaries based on your own abilities.
What encouragement would you offer to someone living with an invisible condition who is considering whether to openly share their journey and experiences?
It is ok to say no and to stand up for yourself. If you are in a place that doesn't support you as a person, it is ok to move on and find something that will. It might take some time to find a supportive place but your mental health and overall health are the most important.
About Anonymous
I have 16 years of HR experience with 8 of them focusing on benefits and leave administration.
