One of the greatest challenges to mental illness is that, relatively speaking, so very little is known and understood about the way our brains work. This makes everything from the diagnosis to the treatment a challenge. There is no diagnostic blood test with a certain level of a specific substance in your blood giving definitive proof that (insert mental illness) is your problem. Neither is there a set medication or treatment that will repair, suppress, or in some other way make up for whatever is lacking in your health. This post is not meant to disparage the medical field or any of the professionals within it. A lot of research and study has been and is being done in this area.
But because it is so unique to the individual, mental illness is still very much of a guessing game. From the diagnosis to the treatment, nothing is concrete or exact.
Doctors are educated about what works for most, or many people. They typically diagnose and treat based on the “general population”. And from their standpoint, that is what makes sense. Most of the time. But since mental illness is so very unique, I wonder if there really even is a general population. You are an individual and the best plan of care for you is probably multifaceted. If you are like everyone I have come into contact with, finding what works will take time and a lot of trial and error. And then it will change and evolve over time.
But how can you determine all of this? You will need an advocate. And even with the best team of doctors, you are still the best advocate you’ll find. You are the only one who experiences your illness in the way you do. You have to come to know and understand yourself as best as you can, you need to develop an awareness for how things affect you, and you need to know that you deserve to feel better and to find the best course of treatment for yourself.
In my experience, this comes from many sources, but there are several things that will help you become the best Guessing Game Advocate you can be.
1. Track your symptoms. Get to know your illness.
My favorite mood tracker is an app from Depression Bipolar Support Alliance (DBSA). They also offer printable charts here, if you prefer.
Tracking your symptoms accomplishes a lot of good. First, it helps you understand yourself. When I first started tracking, I was surprised by just
how much it helped me learn about me, like how many times my mood changed in a day, or how much my sleep was connected to just about every other symptom, or how often I was having certain thoughts. Tracking helped me make connections between times of the day, week, or month that were consistently good or bad. It helped me make connections between different types of exercise and my mood. It helped me make connections between therapy and my mood. It also helped me distinguish between different symptoms. It helped me see what changes new medications made. And so on and so on.
Since all mental illnesses are unique to the individual, tracking your mood is the best way to become educated about your own mental illness. And this is an invaluable tool for both yourself and your doctor.
In fact, tracking my moods has come in quite handy with my doctors on more than one occasion. Like when I told my doctor that I wanted to go off of all of my medications. We had tried so many different meds in varying amounts, at different times of day. After months of careful tracking, I realized that I had gotten progressively worse since beginning on medications. As I will explain next, I’m a big fan of my doctor, so I’d like to think he would have listened to me regardless, but it definitely helped things to present to him the evidence based on daily tracking.
My mood tracker ended up being an even bigger benefit though. I wound up in the hospital within a week of that appointment with my doctor. Among other reasons, I was broken hearted because I knew that the doctors at the hospital would put me back on several medications and probably increase my dosages. However, when I told them I had been tracking my moods and responses to medications, they paused. They listened. And they agreed with me based on the evidence. They concurred with the plan my doctor and I had come up with at my prior appointment of tapering off of everything I was on and going a different route for my treatment.
2. Find a good doctor.
I cannot stress the importance of this enough. My first experience with a psychiatrist was years ago during an earlier hospital stay. She was nice, but more interested in getting me out of the hospital than helping me really get better. The next psychiatrist I saw was absolutely awful. He had several counselors working for him who kind of did the “screening” and then he would meet with each patient for about three minutes, write a prescription, and send them packing. When he encountered a patient, like me, who wanted to get off of the medication (because it was only making things worse, not better), he got really upset, disregarded what I reported, and very condescendingly explained (threatened) that I would only get worse off of the medication and then when I came back wanting to get back on it, I would be more difficult to treat and would require a higher dose. His bottom line was that if I would not continue on my prescription and trust him implicitly over my own experience, he did not want to treat me. If I refused to accept that he knew infinitely more than me, I was not worth his time. Who cares if his knowledge was actually bringing me closer to wellness or not?
I walked out and never looked back. I tapered myself off of the medication, practiced meditation, and gradually got better. (For a couple years, anyway.) And I vowed to never return to a psychiatrist.
Then I ended up at the hospital again. Seeing a psychiatrist is a mandatory part of that whole business. This one was equally dismissive of anything I had to say and just wanted to prescribe prescribe prescribe.
That hospital stay was when I realized I had type II bipolar disorder, so I recognized that I needed to see a psychiatrist regularly. This time I did some research and I found a good one. Our visits lasted closer to an hour, rather than the standard three minutes. He listened to what I had to say, validated much of it, and explained so many things I didn’t understand. Basically, he treated me like a person. Not a lesser being.
I was so worried when we moved out of state. Experience had taught me that a good psychiatrist is next to impossible to find. Lucky for me, I ended up in the hospital yet again within a couple months of the move. Since I had not yet found a new doctor, the hospital randomly assigned me to one when I checked out. A resident, relatively new to the field.
I love him. He listens to me. He answers my questions. When I express concern about a particular treatment or medication, he weighs that as heavily, if not more, as any other deciding factor. He says things like, “I know what has helped to successfully treat thousands of others, but only you know what works for you.” Because I track my symptoms and work so hard to understand what is going on with me, he trusts me.
He trusts me so much that when I came to him with my mood tracking chart and told him I was pretty sure that all of the medications I had tried/was currently on were only making things worse and that I wanted to try going off of everything completely, he said ‘okay’. Not without stressing how much that went against all of his training and education. But he told me that it was more important to him that we trust each other, so I will continue seeing him and he can continue monitoring me.
When I ended up in the hospital, the doctors there consulted with him. I had met with one of these doctors at a previous hospital stay (I promise I’m not in the hospital all of the time—this is all over the course of several years!) and he had been helpful, but very condescending. My doctor told them they could trust me, and they did. They listened to what I had to say and believed me. The condescending doctor was still condescending, but he listened more and included my input in the treatment plan we ultimately came up with.
I say ‘we’ because I was, and continue to be, a very active participant in my plan of care. A key part of being your advocate in the guessing game is to be involved. View your relationship with your doctor as a partnership, not a dictatorship. If your doctor is not on board with this, find a new one.
Finding a good doctor can be frustrating and can take a long time. Do it anyway. You deserve a doctor who will listen to you. You deserve a doctor who is more concerned about helping you along the path to wellness than being the end-all authority on everything. I drive 45 minutes and work around the not-super-convenient schedule of a resident because it is worth it to have someone who listens to and respects me.
I could labor on this point a while longer, but this post is already getting long enough. So, I will pause here and continue sharing what I’ve learned in my next post.
The Guessing Game Advocate – Article Series
This article is part of series of articles by Cheryl. Click on the links below to read more about the Guessing Game Advocate:
Part 1 – The Guessing Game Advocate
Part 2 – Learning to Trust Yourself
Part 3 – Going Natural
*Real Imprints Mental Health Tip: Do you feel depressed? Does your depression keep coming back or getting worse? This book may help answer some of your questions, “Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar” by Jim Phelps on Amazon.com.
-Cheryl
This post first appeared on Real Imprints.