I have spoken to many people diagnosed with acoustic neuromas over the years. I am always amazed by each new story. Every person’s experience is so unique and individual. In most people’s stories, their brain tumor diagnosis arrives at a hugely inconvenient moment. Whether its during a pregnancy, while pursuing your doctorate, in the midst of a cross country move, while in high school, or during caregiving- there is literally never a good moment for a brain tumor diagnosis. I certainly felt like I couldn’t take time off to do brain surgery in the midst of a busy work season and with a two year old child. Yet, I needed to, and I made it work. It’s always so hard to do a brain tumor diagnosis plus the other complexities of life.

Also, having a brain tumor diagnosis is not a protective factor for your health. You don’t suddenly get a pass at dealing with other health issues. You may have many, none, or a few health issues impacting your life alongside your brain tumor diagnosis. When you have at least one other health concern, it can really add to the challenge of the experience. It can create other hardships, such as not being able to take ibuprofen to help with pain management post surgery because you already have digestive issues. Other health problems can muddy the waters when trying to decide what symptom is caused by what issue- am I tired today because I have hearing fatigue or because of my autoimmune condition causing fatigue? Tackling your brain tumor diagnosis while trying to manage other health conditions can be overwhelming.

Besides navigating your life circumstances and your health, another huge difficulty in the brain tumor diagnosis journey is navigating the health system. Whether you live in a place with private or public health care, the vast majority of stories of people who are dealing with acoustic neuromas talk about how hard it was to work through the bureaucracy of the health care system. I have heard of many battles to get treatment covered, years long waits for treatment, and people being forced to have treatment with a doctor who has literally no experience with acoustic neuromas. It can be almost a full time job just navigating the red tape of a serious diagnosis, and it always seems like despite research and questions surprises still crop up. The health care system is such a necessary evil- but it is not easy.

While the words, “Brain tumor,” immediately convey a level of seriousness and fear, I don’t think the average person guesses how all these other challenges in life really stack up on top of an already overwhelming situation. It’s easy to feel crushed under the weight of it all. My coping mechanism was to try to break things down into actionable items and what needed to be handled today. I couldn’t see how I would make it all the way through all of my complicated circumstances, but I could call and schedule the next doctor’s appointment. I also relied on my support system to help me carry the weight of some of my other giant life responsibilities (asking my family to care for my child and training my staff to handle my responsibilities while I was out). When the days were really hard, I tried to find at least one good story about the day to tell myself. It could be something small, like a beautiful sunset or a great cup of coffee. But I make a point to stop and find the small joy to help keep me going through those really overwhelming times.

The reality is that while a brain tumor diagnosis is hard enough in a total vacuum, none of us have the gift of receiving our diagnosis with every other aspect of life being in perfect condition. We all have things going on and going wrong in our life outside of the diagnosis. When I hear a new story, I often think to myself that this person really went through it and I am so impressed by their strength and resilience. Then I hear another story and think that story is also amazing. While it isn’t the misery Olympics, and no one is winner of the most awful situation, I take a lot of comfort from knowing that this is a shared experience and that many other people have made it through this difficult journey. I look to some of these other folks’ stories as forms of encouragement and inspiration. I appreciate feeling less alone.