I have had this post bubbling for quite some time, 5 years to be exact. Topic: Mold. Problem: Doctors Not Listening to Those in their Care. Result: Mental and Emotional Pain, Self Doubt, and Continued REAL health issues. What does this have to do with dementia? Well, lots actually.
For nearly 15 years, I have struggled with mold toxicity issues, giving up my 20s and the first part of my 30s to feeling less than myself. Filled with brain fog, fatigue, and so much more, I visited doctors and health practitioners trying to find a way to get over this state in life. I had doctors who never truly saw or heard me. A doctor who mocked me and many others telling me I was making it all up. 5 years in, I finally found a doctor who listened, knew what I was saying, believed it to be true, and told me what was going on. He followed it up with a, “I am sorry, but there is nothing I can do to help with with this issue.” I started to get better for a while only to be knocked back down again a few years later. This time working with a practitioner that knew what I was saying, could do something to help me, but was so insistent I fit in a specific box, she ended up just wasting my time and money.
The mocking, the invisibility, that struggle to find ways to live well while not feeling like oneself, that “fit in this box or else” mentality, take their toll and are sadly, a near universal feeling for many who try to be active in their own care, and for those living with something that is still unknown, misunderstood, or feared.
Mold is not dementia. I will never claim otherwise. But with some overlapping symptoms, and experiences we can commiserate together the state of our medical system. We can find common ground to connect us and allow us to better support each other. We can use our experiences to better understand each other. I know my experience with mold propels me forward in a different way and allows me to show up better when that person comes to me with one of those stories of being invisible, dismissed, and belittled on the journey to diagnosis with a type of dementia.
I cannot explain how much I cringe hearing about the experiences many of the individuals I work with have with their care team. Much like my experience, they are not always listened to and seen. This can be because they think that dementia means they can’t have the conversation, or that they simply don’t care. We still in 2025 have doctors telling people to “get their affairs in order” at the time of a diagnosis and then turning and only talking to the family member joining them in the appointment.
How can we still act like in this in a moment of simple care? Dignity must drive our work and yet many can’t seem to grasp that concept. Maybe our heads are too deep in the sands of research for a cure that we have forgotten about the beauty and dignity of each human life. Problem: Doctors are not listening to those in their care. Result: Mental and emotional pain, self doubt, and continued health issues.
Dementia is not a magic wand that make all past health concerns, dreams, goals, and life away. There is still a person before us worthing of being heard and seen as they try to figure out how to live well with dementia. Live well with dementia and arthritis. Live well with dementia and macular degeneration. Live well with dementia and hip pain. Live will with dementia and bi-polar disorder. Live will with dementia and anxiety. LIVE WELL! Not being seeing by the professional was are (told) to trust, exacerbates the problems, emphasizes the losses, and ignores the personhood of each client, resident, patient. It hinders our ability to live well.
There is great beauty and quality care taking place within those who care for and support those living with dementia. And, there is always work to be done, areas to improve, and things to learn. For those of us in caring position, I invite you to see what has taken place in your life that could better inform how you care by making connections and discovering common experiences.