Hi, my name is Cristina and I am terrible at self-advocacy.

While this confession might not be a big deal for some, having as complex a physical disability as spinal muscular atrophy (SMA) makes the above statement kind of a big deal.

For those unfamiliar, SMA is a chronic condition significantly affecting my muscles and energy level. I have near-paralysis in my arms and legs and experience severe fatigue on a daily basis. As my care needs become more complex, I find myself reflecting on the importance of self-advocacy and honestly am overwhelmed by the added responsibility.

“You are your own best advocate” is a popular phrase but what does it actually mean? While this phrase is supposed to be 100% empowering, once one starts to break down how this plays out in real life, it isn’t as unicorns and rainbows as it sounds.

Don’t get me wrong, being our own advocate is necessary. I mean, who else will do it? Fairy godmothers with magic wands are usually in short supply so it’s up to us to fight for our human rights.

However, not taking no for an answer means constantly taking from our limited and already-depleted time and energy. While I acknowledge not every disability affects energy to the extent SMA does, I believe we all are being stretched by life’s responsibilities. As such, people often talk about the importance of a work/life balance but I believe a work/life/advocacy balance is more reflective of the disabled experience.

While this diagram shows perfectly balanced circles, I think we all know life isn’t perfect. On any given day the circles might be different sizes, with one sphere taking up more oxygen than the others, but I don’t think I’m alone to feel like self-advocacy is especially draining. In order to protect my mental health, I have made a series of tough personal choices that have greatly altered the course of my life.

For instance, in my first few years of university I poured everything into being a successful student, hoping that graduating with a BA would bring me financial stability as a disabled woman. However, in order to accomplish my goal, my life was extremely unbalanced.

Friendships were sidelined, medical appointments were never made, meetings with financial advisers were never pursued, and self-advocacy wasn’t even on my radar. In fact, I believed I was being my own advocate by not allowing my limited energy to be overtaken by the bureaucracy of the disability system.

Anyone who has filled out tedious disability funding forms or been in lengthy meetings being told no to vital care supports will understand my frustration. In my first semester I was having enough of a hard time figuring out how to use the library key card, never mind establishing all the supports I needed transitioning from child to adult service departments.

I remember one meeting in particular being especially exasperating. Scheduled a day before my first ever university midterm, I was already experiencing test anxiety and what turned out to be a three-hour appointment did not help.

During the meeting it was apparent this person was misinformed about my disability. They were new to the position and completely out of line with what care supports were available. After going through countless forms and policy booklets—some of which were clearly inapplicable to my situation—I was then told information that I knew was factually inaccurate. While I did question this person, I largely stayed quiet even though I had valuable knowledge that came with lived experience.

Why didn’t I press harder? “The squeaky wheel gets the grease,” but what if all I could conjure up was a silent scream? Unfortunately, I just did not have the physical or mental energy to talk to their supervisor, file a complaint, and go through an appeal process. As a result, there are policies from that meeting still affecting me to this day.

While I attribute some of my actions (or inactions) to immaturity, I also realize I cannot underestimate the added pressure of being disabled. As an adult, there are many issues I feel I should tackle and feel like a failure when I cannot physically and mentally take more on my plate. Thus, protecting my own mental health must be a part of the conversation and I now understand self-advocacy to be just as much about addressing a microaggression as changing policy.

To this point, author and activist Cleo Wade writes, “[N]ot every ground is a battleground.”1 In a time when we as a society are expected to take a stand against everything and everyone this seems so counterintuitive, especially when many people’s human rights are in grave danger of being taken away.

I don’t believe for a second Wade is suggesting us to be apathetic but I think she is acknowledging what we are all capable of handling. In a way, her statement is a wonderful expression of self-love because it releases us from the unrealistic pressure to be perfect.

So how do we establish a balanced, well-adjusted life with a disability or chronic illness?

Honestly, I don’t know! With no handbook, being disabled often means relying on our intuition to guide us when we encounter some of those cringy moments of ableism.

But I do know I will keep trying. Even if I get it wrong sometimes, I will live to press on another day. One day self-advocacy might look like writing emails and making appointments, while the next might be taking a mental health day to spend time with my family dog, Teemu.

What are some ways you show up as a self-advocate? Whatever the version of self-advocacy is for you, may you find ways to recharge, press on, and be gracious with yourself when life isn’t perfect. Now, please excuse me while I go play with my dog!