My oldest cousin has told me for many, many years that she thinks there will need to be more medical advancements made before there is resolution with my health situation, and that seems to be accurate on many different levels. I know that new advances in medicine are happening all of the time, so here is the question: Will I still be alive when the advancements I need become a reality? And, if so, what will my quality of life be at that point? A few months ago, one of my friends who works in healthcare texted me to let me know that new testing was created for something that practitioners in her field have been hypothesizing for quite a while. She was providing me with some additional hope by reminding me that new advances in medicine are happening every single day.
My health situation has always been ahead of modern medicine. For example, I found out about my food sensitivities in 2005 before food sensitivities were a thing. Most people had never heard of the word “gluten” when my Naturopathic Doctor tested me for food sensitivities. We had to make everything I ate from scratch — there were very few products at the time that were free of gluten, dairy, soy, and yeast. Now, food sensitivities are common and accepted by most people. And, this is just one example of many. Just this weekend, someone close to us informed us that their doctor recommended that they get tested for SIBO (Small Intestinal Bacterial Overgrowth). I am grateful that conventional medical practitioners are starting to become more aware of SIBO and are testing for it, because I had to go to a Functional Medicine practitioner before a SIBO test was recommended to me in 2019. My conventional GI specialist couldn’t figure it out. After the medication he prescribed made my symptoms worse, he strongly insinuated that my issues were all in my head instead of trying to figure out the real root cause.
I could go on and on with example after example, but the point is that I have been waiting for science to catch up for a long time. I have always had to piece together information on my own due to conventional medicine not having the knowledge, testing avenues and/or treatment options available to help me. I am excited for the day when that is no longer the case.
In my Thank You, Universe post from last week, I wrote about listening to a podcast episode where the co-host revealed some medical information that she had received concerning mold mycotoxins. I listened to the follow-up podcast episode after I published that post, and this co-host talked about the large number of direct messages she received after the airing of that original episode. Many people wanted to know where she got these tests completed, and she was hesitant to speak much about it all since the tests are not yet part of mainstream/conventional medicine. She knew that she would get some backlash from people who have not traveled this road less traveled. The reason she started down this path to begin with is because of her husband’s health situation. He had been diagnosed with Bell’s Palsy twice, and the best specialists they could find told them that her husband was just unlucky. Not satisfied with that answer, they chose to look deeper and see a functional medicine practitioner. When she herself started having some unique symptoms, she went the functional medicine route as well.
I can totally relate to this podcast co-host’s hesitation to speak about it publicly. Based on my own experience, I know that everyone has an opinion. And, the people who have never been anywhere close to being in my shoes usually have the loudest opinions. What I wish everyone understood is that no one wants to have to spend more money and/or seek out alternative paths. The only reason someone chooses the path that costs more money and brings about the most judgment from others is because they have no other choice. They believe in conventional medicine. They would love nothing more than conventional medicine (and health insurance) to cover all of their medical needs. However, that is just not the case for some people. While I wish this co-host and her husband were able to find resolution by utilizing conventional medicine, it felt validating to hear of a situation similar to ours. I felt less alone for a brief second. This is the power of sharing our stories.
I also watched the Diane Sawyer special last week where she interviewed Bruce Willis’s wife, Emma Heming Willis. Bruce has Frontotemporal Dementia, and Emma has written a book to try to help others who are in the caregiving role. As I was watching the interview, I immediately knew that she was going to receive a lot of judgment from others. I am not currently the caregiver, but I do know what it is like to share my story in a public way. I know how people generally react to hearing these types of stories. I know how critical others can be when they have no idea what it is like. Unfortunately, I was right. Quite a few people made judgments about the path Emma has traveled and the choices she has had to make. Watch the short video below to see how she responded a few days after the interview aired. [Note: The video is key to understanding the rest of this blog post.]
Even though I am not the caregiver, I can definitely relate to her. If you have read my previous blog posts, you know that I have responded to Unsolicited Advice in similar ways. I learned many years ago that I should remain open to suggestions, recommendations, and constructive feedback, but only from people who are sitting in the trenches with us — my medical team, our mental health provider, and our inner circle of trusted truth tellers who are active participants in our daily life. This path is hard enough to navigate with all of the unknowns and uncertainty; we don’t need advice and/or feedback from people who have no idea what it is like to be in our situation. Until someone has experienced being on a health journey where Anything is Possible, they can keep their opinions to themselves. And, even then, they should probably not give their two cents unless it is requested.
It feels like judging others and attempting to “other” them is becoming increasingly problematic in our society. Most of the time, casting judgment on others is the result of people not being able to handle the emotional discomfort of something similar happening to them. If they can identify how this other person is doing it wrong and how they themselves would handle it better, then they can “make sure” this situation won’t happen to them. It is usually about keeping themselves safe and lacking the ability to regulate their own nervous systems. It is becoming clear that most people are overwhelmed and don’t have the tools to handle the overwhelm. Our country would be in such a different state if everyone learned how to regulate their nervous systems. Empathy and compassion could replace judgment and othering. Until that happens, I will continue to implement one of Mike Posner’s life lessons. In a recent interview with Oprah, Mike revealed that he lives by the words, “Don’t think other people’s thoughts.” In other words, be mindful of the source of your thoughts. And, that seems like a great way to sum up how to best handle unsolicited advice and/or feedback.
Brutal. Waiting for science. The road less traveled. Judgment from others.
Beautiful. New advancements in medicine occurring every single day. Hearing other people’s stories and feeling less alone. Having the tools to regulate my nervous system so that I don’t project onto others. Thinking my own thoughts instead of thinking other people’s thoughts.
Just another day of . . . This Brutiful Life: The Brutal & Beautiful Moments of My Life.
This Brutiful Life 