DIARY OF A FIERCE WOMAN 11/11/2026 THE JOURNEY

I’ve seen four neurologists looking for a diagnosis of my cognitive impairment. Following a second neuropsychological assessment two years ago, I saw one neurologist who said, “You don’t have dementia, your brain just thinks you do”. Following a PET scan that showed moderate frontotemporal degeneration, another neurologist thought that it looked like FTD but she wasn’t sure so she referred me to a third neurologist who didn’t know what it was. She then referred me to one of her colleagues who is a neurologist and psychiatrist. He didn’t know what it was either but wanted me to follow up with him in about 6 months, so that’s what I did.

That appointment was yesterday. It did not go well. He said he thought it could be depression causing my symptoms. I felt dismissed. I know of so many others who seek answers and the doctors dismiss them. I belong to a support group that frequently says, “If you’ve seen one person with FTD, you’ve seen one person with FTD.” It is not easy to diagnose. I understand that. I understand that I am not a typical case. I also know my body. I am extremely intelligent and extremely self-aware. I have had mental illness since I was 12. I know depression. This is not depression.

There are times when I feel depressed. My life has fallen apart. I was happy. My life was good. I was serving God in exciting ways. Now, I can’t read a book or listen to a sermon because I can’t process what is happening. I’ve lost the ability to decipher information and respond to it. I’ve given up teaching and ministering because I no longer have the capacity to lead. I’m sleeping in a recliner because I’ve stopped being able to automatically swallow. I choke on saliva when I’m lying flat. The swallow test and the endoscopy I just had point to a neurocognitive basis rather than a structural one.

I know I am not alone on this journey. Others have struggled to find diagnoses that fit. I wish people could just be believed when there’s a health question. We’re expected to trust these doctors when they don’t trust us. I’ll confess I use AI. I know all the bad results that can come from doing that, but I also know, when I don’t have answers, it can guide me to the right questions to ask. I’ve uploaded all my test results and asked point blank if it could be depression. It says it could be but then gave me a list of symptoms that don’t match depression. I like using AI because it listens and probes further while the doctor made up his mind before he talked to me. He didn’t listen to the worsening I’ve experienced over the last six months. The debilitation I’m dealing from having given so much of my life up. Instead, he just dismissed me.

So, what do I do now? There is no treatment for FTD but I also can’t take anti-depressants. I have schizoaffective disorder. The psychosis is under control. I’m not going to mess up my tenuous handle on sanity by experimenting on new meds. I’ve had the same psychiatrist for over 25 years. We’ve tried many, many medications over the years. Neither one of us is willing to mess that up for a diagnosis that doesn’t make sense. We talked about it and agreed that my delusion of living in hell is worse than the desire to pick up a book. So, instead I just wait. I’m worsening. I will continue to worsen. A particular diagnosis isn’t going to change that. If it was something I could try, a treatment that had the possibility of helping instead of harming I would jump on it. Instead, I’m just waiting for the other shoe to drop.

I’m ready to give up. I’m tired. I’m frustrated. I’m discouraged. But I’m a fighter. I will join the list of fellow warriors that have come before me and those that will come after. We don’t give up. We keep going, hoping, coping even when the journey is hard.

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Photo by Clemens van Lay on Unsplash