The experience of pain is extremely subjective and personal. Everyone has a totally unique relationship to their pain. I am only telling my own story here, and I want to make sure not to make light of or diminish anyone’s struggle with pain. I hope that if you are fighting with pain, that you continue to seek options and good doctors who listen and take your perspective on your pain seriously.

I feel very grateful that, generally, pain is not a daily part of my life. However, I have experienced periods in my life when pain was a more constant companion.

I had a cerebral spinal fluid (csf) leak while in the hospital after my surgery to remove my acoustic neuroma. Incidentally, the csf leak treatment was the worst pain of my life (and I have given birth, had appendicitis, and experienced ovarian torsion). I believe that the csf leak impacted my recovery from brain surgery and played a role in my headaches during the recovery period. I struggled with headaches for about a year and a half after my craniotomy. At first, the headaches were daily, and over time, they became a few days a week, then once a week, then a few days a month, then faded out to my new normal. These days, I am just a little more headache susceptible than I used to be. If I am under the weather in any way (sick, overtired, stressed, etc.), I always have a headache accompanying.

More recently, I have had a recurring health issue that has included a lot of pain. This health problem, which is entirely unrealted to my brain tumor, has meant months of living in pain, brief spans of feeling well, and then months of living in pain again. I have hopefully solved the situation now, but it has been a challenging year of diagnosing and figuring out the solution, as health problems so often are.

I have really found that my relationship to pain is that pain diminishes me. It takes a large chunk out of my capacity to do life. Coupled with other challenges like hearing fatigue and balance struggles, and suddenly I can feel like I barely have enough bandwidth left for the most basic parts of life. Pain eats up my energy. It slows me and dims my internal light.

I am a fairly strong-willed person, and I often push through the pain to make life happen. However, pushing definitely takes a toll, especially over time. I slowly become more and more worn down, emotionally and physically. Pushing just to check off the must do boxes of life means that I can’t do as much as I normally would. Inevitably, that usually means that I focus on the necessary tasks and sacrifice the recreational ones. Over time, losing my recreation means that I don’t refill my soul, and I have less resilience. This can create a really ugly spiral to a very miserable situation.

Pain can also create a mental fog. It can make it harder to think and feel sharp. It’s like a portion of your cognition is tied up tracking the pain, and that leaves less to handle the task you actually want to be doing.

Listening to pain is important. We have pain for a reason, and we need to communicate with our bodies. I do find that with extended pain, I disassociate from my body just because I need a break from the non-stop pain. While breaks can be good and healthy, dissasciation is potentially dangerous as you can miss important information. Also, dissasociation can make things like mindfulness impossible to practice. It is a tool to use cautiously and carefully.

Communicating pain can be very challenging. Everyone experiences it so differently, and finding the words to express it can be really hard. I think that doctors can do a better job helping us with pain when we take the time to really think through how to explain it. That can be a long and difficult process. But I would recommend taking the time to think it through and write it out. Is it sharp, dull, burning, throbbing, continuous,  intermittent, aching, bright? When does the pain occur? Where does the pain occur? How big is the pain on the 0-10 scale? Consider keeping a journal to help you organize your thoughts and observations to give the doctors more data.

I hope you already have a wonderful supportive doctor in your care team who listens to your pain descriptions. If you don’t, I hope you can find one soon. The right medical professional can make all the difference in the world, supporting you through pain and helping you manage. It is wonderful when you can keep that great doctor, too, as a longer-term relationship can really increase the understanding between you and the medical professional. If you don’t feel your team is listening and supporting you, please don’t feel you have to stay with them out of a sense of obligation. There are better resources out there.

There are so many possible solutions for pain. Sometimes, medical treatments like medications are the best solution. Other times, lifestyle remedies make an impact, like the right pillow decreasing my headaches. A combination of both may be the answer to your pain that helps best. A mixture of creativity and a willingness to try can help with creating pain solutions. I hope that if you struggle with pain, you are able to find rest from the pain. It’s so hard that it is not one size fits all and that everyone walks their own path.