How A Brain Tumor Taught Me to Advocate for Myself in Midlife

This unexpected journey has taught me critical lessons about self-advocacy and how important it is that we trust our intuition and have the courage to speak up for ourselves.

Prefer to watch rather than read? Here’s a video instead.

Three years ago, I faced a life-altering experience—an emergency craniotomy to remove a benign tumor from my brain. I’d been experiencing episodes of vomiting along with some balance issues. After months of being repeatedly, and inaccurately, diagnosed with vertigo, an MRI revealed that I had a hemangioblastoma on my brain.

As this particular tumor wasn’t one that would respond to medication, surgery was my only option. Within one week of my diagnosis, I underwent a craniotomy to remove the mass from my brain. Without intervention, I ran the risk of ending up in a coma.

Despite the surgery being a success, recovery was slow and challenging. I was left with mobility issues (I had to use a walker to get around for a while) and I still suffered with frequent vomiting and stubborn nausea. I couldn’t stand up in the shower, and my husband had to help me in and out of the bath.

Difficult though it was to try and find my way back to a place where I felt like me again, one thing I was exceptionally grateful for was that I hadn’t allowed my doctors to convince me that I was ok when I knew I wasn’t.

In addition seeing two of my primary doctors, I saw a doctor at urgent care, a physical therapist, and a neurologist. I had the Epley maneuver to treat BPPV (Benign paroxysmal positional vertigo) and I was also given medication in the form of pills. Nothing worked, and all the while I felt worse and worse.

In those days, I was active on Clubhouse as part of a group of midlife coaches (is that app still going?!) and I’d be sitting on my desk, speaking to a virtual room full of women, then having to mute myself as I’d dash to the bathroom to vomit, before taking my turn on the mic again.

Soon, it got to the stage where I couldn’t even stand over the toilet to be sick and I’d just vomit straight on the bathroom floor. I remember my amazing husband coming in to clean up the mess I’d made (for surely what was the hundredth time) and I looked up at him and said, “Something is really wrong with me”. He nodded slowly, matching my somber expression. In that moment there was no denying this was something serious, not just something stubborn.

Despite everyone telling me that vertigo could be tricky to manage, which was likely why I was still experiencing symptoms, I insisted on having more tests and I booked myself in to see more specialists. One of those was an ENT doctor who, after hearing the treatments I’d already tried, referred me for an MRI.

And there it was. In black and white, quite literally. A tumor with an associated mass that was creating hydrocephalus, an abnormal buildup of fluid in the brain, causing me to vomit and lose balance.

So, not vertigo.

Three years later, it’s not just the memory of the surgery that stands out, but the invaluable lessons that unfolded in its wake. This unexpected journey has taught me critical lessons about self-advocacy and how important it is that we trust our intuition and have the courage to speak up for ourselves.

Here are some key lessons I learned (and you don’t have to have a brain tumor to benefit from implementing them!):

LESSON 1: THE POWER OF PREPARATION

Before my diagnosis, I used the Notes app on my phone to document my ongoing symptoms. I knew that it was all too easy to get brain fog during a medical appointment and potentially forget to relay important information to the person I was consulting with.

Arriving to appointments prepared not only helped me feel empowered but also transformed my interactions with medical professionals. I was no longer a passive recipient of care; I became an active partner in my own health journey. This shift in mindset is crucial, especially in midlife, where many of us may find ourselves grappling with various health issues that may be dismissed or ignored. It reminds us that we must take our health into our own hands.

LESSON 2: TRUST YOUR INTUITION

Amid the whirlwind of medical jargon and opinions, I learned to trust my gut feelings. There were a number of moments prior to being diagnosed when I knew I wasn’t being listened to. One of those was at a “bro heavy” physical therapy center by Wall Street. The reception area smelled of popcorn and the therapist I was paired with seemed to be more interested in continuing a chat with his buddy.

During the consultation, the therapist insisted that the Epley maneuver was going to solve all my problems. I assured him it would likely not work, since it hadn’t on previous occasions, and instead would probably make me vomit. He performed the maneuver, and then looked on aghast as I immediately threw up in the trash can.

I felt so horribly ill that I would have loved nothing more than a straightforward fix, but my gut told me that this therapist wasn’t a good fit for me. He was looking at me, but he wasn’t seeing me. He was taking notes, but he wasn’t listening.

Our intuition is a powerful compass. If we get a strong vibe (or even a slight one) that a medical professional isn’t taking us seriously, it’s time to seek a different opinion.

LESSON 3: SPEAK UP

My journey to a diagnosis required me to use my voice. I had to articulate my questions, concerns, and desires clearly and confidently. My health—and as it turned out, my life—depended on it.

I knew that, while I may not have gone to medical school, I was an expert when it came to my own body. In fact, nobody knew my body better than me. Therefore I had to take responsibility for advocating for myself so I stood at least a chance of receiving the best possible care.

Speaking up is a vital skill in midlife, whether it's in medical settings, workplaces, or personal relationships. Communication fosters a deeper connection and ensures that our needs are met. Realizing that my voice was an integral part of reclaiming my health really spurred me on and became a crucial aspect of my healing process.

LESSON 4: SURROUND YOURSELF WITH SUPPORT

Navigating my health journey underscored the importance of a supportive network. I leaned on my chosen family and friends and their encouragement helped carry me through the tough days when the weight of my situation felt too heavy.

I also had to be honest with myself with regard to my current capacity. I had just launched a membership club for midlife women a month before my surgery and I was determined to carry on with business as usual. It wasn’t until an occupational therapist came to visit me post-surgery and gently said to me “You have to let go” he said. “You’re holding onto too much”.

I sat on my bed as he spoke to me, so kindly and carefully, and I told him about my club and the calls I had to be on. In response, he shook his head and said “Be here for yourself. Everything else can wait.”

As midlife women, we often take on the caregiver role, sometimes at the expense of our well-being. My experience with self-advocacy began with acknowledging that I, too, needed care and support. I learned that it’s okay to ask for help and that vulnerability doesn’t equate to weakness. In fact, building a network of support only strengthened and fortified me.

LESSON 5: EMBRACE GRATITUDE

Although gratitude has been a big part of my life for many years, this experience made me want to dig even deeper and truly celebrate what I already have instead of constantly striving for more.

While facing a brain tumor was daunting, it forced me to pay attention like never before to the simple pleasures and treasures in my life—laughs with loved ones, the feel of the sunshine on my face, and the joy of being alive.

Gratitude became my lens for life, allowing me to remain grounded even in times of struggle and uncertainty, of which there were many. “Thank you” are the very first words I say every single morning without fail, no matter what mood I’m in or how tired I am. Before I go to sleep each night, I check off a mental list of gratitudes. There’s never been a day where I haven’t been able to find something to be thankful for.

Gratitude is a powerful tool, especially in midlife when it’s easy to focus on how overwhelmed and under supported we feel. Connecting to gratitude isn’t about suppressing or glossing over any issues that require our attention, it’s simply taking a few moments to acknowledge beauty, joy, and hope amidst any challenges.

If I can leave you with one final thought, it would be to encourage you to keep up with your routine medical appointments. It’s no exaggeration to say that your life might depend on advocating for yourself. That mammogram appointment you’ve been putting off? Make it. That colonoscopy that was recommended you have? Book it. Because honestly, it’s never going to be convenient. You’ll never have a huge block of uninterrupted time. So do it now.

These are the years where we lay the foundations for our elderhood. Make them count. And if you feel a certain way about advocating for yourself and being thought of as a troublesome patient, then it might help to tell yourself this: “I’m not going to leave this world early because I was worried about appearing difficult”.

Nope. Definitely not. And certainly not on my watch.