This wasn’t always the case. When he first came out of the hospital after his initial breakdown, he asked me not to come into the psychiatrist’s office with him. My presence would make him nervous, he said. It would make it difficult for him to be open and honest with the doctor about what was going on.
With some misgivings, I agreed to let him field the appointment by himself. The doctors from the hospital had been terrible about communicating with me, but I assumed that his private psychiatrist would have a better bedside manner toward me, John’s wife.
I was wrong. Although I asked to visit with Dr. Black for a few minutes after John had seen her, she told us that she didn’t have time. When I called her in between John’s appointments to let her know that his psychotic symptoms were resurfacing, she never called me back. She also had the nerve, when I finally did speak with her during my husband’s next appointment, to tell John (and me) that I was part of the problem, and that he needed to set boundaries around his interactions with me.
Her refusal to give my opinion any weight led to misdiagnosis of John’s illness (she thought he had anxiety and depression, when in reality he was suffering from a manic episode with psychotic features), and a second stint in the hospital for him.
Although HIPAA privacy laws can sometimes make it difficult to get involved in a loved one’s psychiatric care, there are three reasons I believe you should always fight to be an active member of your spouse’s mental healthcare team.
First, you know your spouse better than anyone, and can offer valuable insight into his/her behavior and mood. This is a point that Dr. Black completely overlooked. After talking to my husband for 30 minutes, she thought she had a better handle on who he was than I did. She didn’t, and John paid the price.
Denial and anosognosia (lack of insight regarding your illness) are two hallmarks of mental disorders. Expecting that people who suffer from psychotic illnesses will be able to self-report their symptoms is naïve, particularly during a first episode.
In addition, bipolar disorder can be hard to diagnose when a psychiatrist is only presented with the patient’s perspective. It’s not uncommon for people with bipolar to focus much more on their depressive symptoms than their manic or hypomanic ones. People tend to feel good when they’re manic, bad when they’re depressed. They seek help for the depressive symptoms without thinking the manic ones are significant enough to mention. This can lead to misdiagnosis and the prescription of antidepressants, which can trigger or exacerbate mania.
When psychiatrists solicit the spouse’s opinion, they gain additional information about the patient’s symptoms that the patient may not have seen. This leads to more accurate diagnosis and a better long-term outlook for your spouse.
Second, you send your spouse the message that you’re in this together, and that you’re there for him/her no matter what. Dealing with mental illness is scary, particularly when you’re first diagnosed. There’s a lot of stigma to contend with, a lot of uncertainty, and a lot of self-doubt.
My husband felt like his mind had betrayed him, and his self-confidence was shot. Frankly, I think this blow to a person’s self-esteem is one reason why so many people deny that anything’s wrong, even after years of symptoms and suffering. It’s too hard to admit that you’ve “gone crazy.” It’s too hard to admit that your thoughts and feelings aren’t always under your control.
Once my husband’s paranoia had passed, it was comforting for him to know that he could trust me, even when he wasn’t sure he could trust himself. I’d seen the worst and I was still right there beside him, his partner in trying to figure this recovery thing out.
(The Breaking Bipolar blog has a couple of good posts on how to send the message that you’re there for a loved one no matter what. Holding onto Hope in Bipolar Treatment points out the importance of having someone who believes in you when you can’t quite believe in yourself, and Supporting the Mentally Ill: Best Things to Say includes a great list of supportive sentiments to share.)
Third, you gain peace of mind. One of the worst parts of my husband’s initial breakdown was having no clue what was going on. Was he schizophrenic, or was it just stress? Did he need to be hospitalized, or did he just need to sleep?
Then, of course, there was the fact that the hospital doctors wouldn’t meet with family members. Hell, they’d hardly even return my calls.
I was married to this man, my life was intertwined with his, and yet nobody thought it was important to update me on how he was doing. But mental illness doesn’t happen in a vacuum. My husband wasn’t the only one affected by his breakdown. It threw my life off the rails as well.
After John’s second hospitalization, I insisted on being present during his psychiatric appointments with his new doctor (we did not go back to Dr. Black). It wasn’t that I didn’t trust him; I didn’t trust his illness.
I’d seen him paranoid. I’d seen him delusional. His illness hadn’t given him malicious intentions, but it had tricked him into thinking people—including me—were out to get him. It had tricked him into thinking things that were blatantly false were true.
I wasn’t sure, at first, whether he would tell me the truth about what the doctor was saying. I wanted to be there so that I could hear everything straight from the horse’s mouth.
Now, two years later, it’s not so much about making sure I have the right information, it’s more about ensuring I have all the information. When I accompany John to his psychiatric appointments, I never have to wonder if I have all the information necessary to make good decisions. I know exactly what John knows, and that lets me sleep easy at night.