Returning to work after a concussion: Self-advocacy
This post is about returning to work after a concussion, which I openly want to share is a hard and heavy subject for me because I have experienced trauma and ableism and gender based violence in the workplace over my career.
For almost two decades, I worked in the visual arts as a curator. Then I had three mild concussions over a three-month period in early 2018. I was not able to return full time.
There are many strategies for managing concussion symptoms when returning to work. In this post I want to share what I’ve learned about the importance of advocating for yourself and navigating employer expectations following a concussion to support your recovery journey.
Self-advocacy at work following a concussion
Stripped down, work is simply an agreement to do our job for pay.
We use our skills, experience, and public profile to execute tasks. But matters get complicated around things like overtime, cost of living raises during a financial crisis, and taking on another role’s responsibilities while still doing your job. They become even more complicated for those of us with a disability like post-concussion syndrome. How do you stand in your own power when it feels like an organization is taking it from you?
My experience: Retired Curator Does A Stint as an Office Manager
“All I want is a good PT job with a living wage where I’m treated with dignity.” This was my headspace looking for a job after unsuccessfully returning to work multiple times following my series of concussions.
In the fall of 2019, I found a great job on Indeed for a part time Office Manager role. I dedicated my work to smoothing operations and building business profitability. My role was 15 hours a week at a living wage. Everyone could tell I loved it. My boss said I was worth my weight in gold at my first performance review, just after the pandemic started. I did everything from schedule service calls and regulatory authority visits to administer payroll and manage marketing projects. This job anchored me in the early days of the pandemic because it gave me something meaningful to contribute to. I loved supporting the team because it made me feel useful.
I thought I had set myself up for success because in the hiring process, I was upfront about my limits:
Me, interviewing for the role: Excited about everything I can bring to this role!
Supervisor: Can you work Full time if needed?
Me: With post concussion syndrome, each day is exhausting. I can't do it full time.
Supervisor: Ok no problem…
Supervisor, 3 months into the new job: Can you work more hours? We underestimated what was involved in this role.
Because I directly communicated what I could and could not do from the start, this question about working more hours made me doubt myself, lose faith in the organization's integrity, and feel misunderstood.
As the only admin staffer, I felt responsible for all the admin gaps. This was my internalized ableism showing up as unhealthy thoughts:
A. I'm not good enough as I am
B. They hired me hoping I'd change
C. They don't understand I will likely never recover
So I doubled my hours. It was definitely appreciated in the first year. The company Strategist showered me with appreciation: “I love you! I love this thing you are doing. I love that change you made. Things are 100% better with you here. There was before Alissa and after Alissa.”
It was her way of appreciating that I’d made leaps of progress. But I was terrible at setting limits and boundaries around my role so I was constantly adding new responsibilities to my list.
A. Instead of asking for help I sucked it up
B. Rather than establishing limits I took on more
C. In place of advocating for myself I silenced my voice
I felt like garbage in my body. After my six-hour shift, I had to sleep for hours before I could do anything else that day. I had zero capacity to manage anything else in my life. Rather than examining my people-pleasing and shame about my limits, how I saw it was: “Why can I not even make this great part time job work for me?” And as much as my boss was supportive and non-punitive, he did not appreciate the nuances of everything that goes into solid operations and administration. So I became resentful and needed a change of some kind, not clear on what.
Something shifted in our dynamic when I approached my boss about a promotion, and not in a good way. I asked for a title to match my new responsibilities. I proposed to help at a higher level with financial analysis and operations management. But he never brought up the proposal with me after I submitted it. No response, no raise was my year 2 at the business. I did not follow up which was a mistake.
In Year 3 we hired a full time Office Administrator, something we had all been hoping for a long time. We ended her training with a welcome party. I overcompensated for some weird nervousness I had. I picked peonies for my new teammate, potted up a calla lily for my boss and his wife, and a spiced French apple cake. That same weekend my partner and I drove up to Tobermory with our two doggos because we had the use of my boss’ property for a couple nights at his invitation earlier that spring.
When I returned to work the next week, my boss let me go. He barely offered to write me a letter of recommendation, which never materialized. And every step of the way after that, the business handled my termination appallingly. My Record of Employment was not filed until I requested it twice, monies did not arrive on time, disbursed amounts were incorrect, then incorrect again when recalculated, and expenses were debated and reduced based on a new policy that was mentioned only after I was let go. It felt like I had no dignity as months passed and it dragged on and on.
Three tips for back-to-work success
Here’s what I would do differently from the beginning to hold myself and my supervisor accountable during my return to work after a concussion:
A. Find an organization that has experience with staff living with disabilities
B. Establish and mutually document realistic expectations about my capacity and the role
C. Be myself and consistently communicate actual capacity as it fluctuates
Integrity is action. It is protecting people’s dignity, offering care and support, being attentive to detail and sensitive to context, and treating everyone with respect whether they are joining the team, have been a part of it for a long time, or are moving on. At work, these are the foundations of professional relationships.
But if they are not being upheld and exemplified, then there is a lack of integrity. And when there is a pattern of this behaviour there is no accountability. When the matter of my ROE and pay were finally resolved, I decided I didn’t want or need anything from my former supervisor.
Because of this, not receiving the promised letter of recommendation was meaningless to me.It was actually freeing to know this.
Concussion recovery and Post Concussion Syndrome recovery: Two Beasts
The road to recovery after a concussion is winding and complex, personally and professionally. The concussion stops after the brain stops shaking. The Post Concussion Syndrome can last days to years, based solely on how a person’s body responds to the concussion.
After a lasting period of profound mental illness, loss of identity, and chronic pain that resulted in suicidal thoughts daily, I had to dig deep into my creative core to understand myself. I initially felt I’d lost some previous, “better” version of myself; today I self-identify as living with post concussion syndrome and mental illness. This helps me honour my core values: access, authenticity, and curiosity.
I now know that while my health crisis was caused by the concussions, it was also directly linked to my career in the arts and work-related trauma. (If you can relate and feel it would help to hear this story and how it relates to post concussion syndrome, let me know and I will share it in a future post.)
One of the reasons I started my small business is because I want to live with dignity. My post concussion syndrome affects my capacity to work and earn money. After decades of pounding the pavement and knocking people’s socks off in the not-for-profit arts sector, it was not a clear choice or career progression to move to business, let alone solo entrepreneurship.
What makes sense to me intuitively is trusting my skills as an artist and curator. Turning hard into my love of people and community via social projects. Small enough that I can manage. Initiating a values-based concept based on my own experience.
Garden Variety Movement comes from this creative core: it is yoga for concussion offered via group work and self-reflection. It brings together my operations skills, curatorial superpowers of building relationships, love of research, and appreciation for data-driven decision-making.
The fact that this modest entrepreneurship is the most authentic, accessible, and open-hearted work I’ve ever done makes me most proud. And I report to no one. When I started my career way back in the early 2000s, I made opportunities by writing proposals, chatting people up, and creating paid roles for myself. Soon my body of work was respected and in no small part because of my privilege as a white cis gendered Canadian, I was given some astounding opportunities to live and work across Canada and in France, Germany, Sweden, Italy, Croatia, and England. I collaborated with deeply rooted communities in Sudbury, Guelph, and Etobicoke, Ontario.
I now see the only way for me to “return to work” following my concussion experience is to return to my roots and once again create the job I want for myself. Where the person designing the accountability structures is me. I see how important this is to me in building my small business, especially as I consider bringing in staff members. And I see that the only person I can truly hold accountable is myself.
I am so grateful you are reading this post, because I’d love to hear your views and the challenges you are facing in your post concussion syndrome journey, whether returning to work or elsewhere in your life. Reach out here to share your thoughts.