Let's Talk: One Family's Story of Mental Illness

This incredibly moving story of one family's struggle with mental illness was submitted to me by a very courageous lady whom I am privileged to know and call a friend. Their story:

The Bell Let’s Talk annual campaign day is here and once again our social media feeds become full of great posts and articles about the need to talk openly in order to reduce the stigma surrounding mental illness. Brave people share their stories and struggles.  But there is a group of people who feel they can’t really talk about how mental illness affects them: they are the ones closest to a person with mental illness.

Oh, we do talk! We talk to friends and family for support. We talk in closed online support groups when family or friends don’t really understand.  We talk to our doctors and to counselors and support workers.  We talk in hushed voices in the grocery store aisle when we run into another person we know who is dealing with it in their family. But nobody talks about it out in the open or publicly online on designated Mental Health Awareness Days. Maybe it’s because we don’t want to hurt anyone’s feelings. Maybe it’s because it might create stigma for those struggling. But regardless of the reason, there are so many families in anguish and grief because of the severe mental illness of a loved one.

It’s not that the resources aren’t there for families.  We can get counseling and support for all family members through various organizations.  In fact, every article I’ve ever read aimed toward caregivers of someone with mental illness ends with a caring note to take care of one’s self and to seek out support.  This is all well and good, but when the person causing the grief and stress, and in some cases trauma,won’t accept the help that they need, then how long does a family really benefit from support? Honestly, every time I read a line like this in an article, I want to scream,

“A fat lot of good me getting support does!” Sigh.

One of the main causes of someone not getting the help they need is not stigma or shame or even outright stubbornness and denial. It’s actually a symptom of many types of mental illness.  It’s called lack of insight. “The formal medical term for this medical condition is anosognosia, from the Greek meaning “to not know a disease.” When we talk about anosognosia in mental illness, we mean that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately.” (NAMI – National Alliance on Mental Illness name.org)

If you are interested in learning and understanding more about this condition of mental illness, Dr. Xavier Amador has a great Ted talk that explains the frustration families have because of the condition when trying to help the person experiencing lack of insight.

Our Story: We (my kids and I) talk to one another behind closed doors and in private away from the person with mental Illness. That person is my husband and dad to our three kids.  The problem is he hasn’t been the husband and dad we once knew him to be for a long time now and we are reaching our breaking point. And when a person changes like that and there is nothing that can be done to help them, the effects on a family are devastating.

He has been diagnosed with Major Depressive Disorder with Psychosis/Schizoaffective disorder.

Because diagnosing mental illness is not fine-tuned to a science, the psychologist explained that the two titles differ in when the psychosis takes place (during depression or outside of it). Frankly, I can’t even tell when or if he is ever out of psychosis. It’s that bad now. 

We’ve been together since we were teens. From his early twenties, he has had a handful of episodes. They always occurred around an event or life change (stress related probably): A surgery followed by what was called steroid-induced psychosis shortly after we were married. The birth of each of the kids. These episodes were labeled acute temporary psychosis. There was also a lot of drinking in the early years of our marriage (realizing now it was likely self-medicating for the mental health issues we didn’t realize he was having). The drinking came to an abrupt end when he came out of a couple of months long binge that resulted in some very hurtful actions. Ones we worked through and put behind us for the sake of the family and our love for each other. But unbeknownst to me the depression was probably always there lurking and I had no idea what was in store after a few happy years together.

I just have to say that though there are lots of conversations about depression, it appears in many different forms for different individuals. I didn’t know this until I joined a support group wondering if my husband was bipolar. I questioned it because he didn’t seem depressed! He gets up like clockwork every day without an alarm. Meanwhile, I’m desperately pressing my snooze button before I get up. He exercises and doesn’t look like the typical image of depression. But someone in the online support group told me that in men, depression can look different. It often appears as anger.  Aah! That fit.

Just more than four years ago, we decided to move. It was a big change! I was closing down my home daycare that I had run for eight years, allowing me time at home with our kids when they were young and heading back out into the world to look for a job outside the home. During the time waiting for the house to sell, he had a couple of panic attacks in the middle of the night. Looking back, I remember hints of paranoia but nothing that couldn’t be explained away.

It was also a stressful time due to my daycare closing down as we made plans to move but the house not selling as quickly as we’d hoped. When I got a job, I expected some happiness and relief, but the response I got from my husband was kind of blank. This puzzled me, but I carried on.

Then came moving day, and we had all of the family out to help us. And he just stopped talking. If someone spoke to him, we got a goofy kind of grin and that was it. We lived for a few months in a new home, new schools for the kids, new community and a new zombie-like dad/husband. Needless to say, this was hard on the kids.

One evening I became frustrated and asked him to please speak and explain what was going on. What came next was an outpouring of all the paranoid thoughts he’d been having: there were cameras in the house, someone was controlling his muscles and zapping them and making them weak. He talked until I couldn’t listen anymore. I was shocked and scared. In days and weeks to come, we just watched this person we knew and loved turn into someone we didn’t know. It was his body, but he wasn’t there.

About a year in came random rage episodes. Thankfully these were enough to elicit a trip to the doctor after he became violent and smashed some closet doors. He was given an antipsychotic medication and it worked wonders! I naively thought we were out of the woods! I was so relieved and ready and happy to carry on with a back to normal life.

And then he stopped taking the pills.

Things began to decline again. He became more withdrawn and weird in his mannerisms. At this point, he was talking more to me though (maybe as a result of the medication for a few months). He shared with me incidents he was concerned about at work and told me how these feelings of rage would come up out of nowhere and they didn’t make any sense. He said that usually, something happens to trigger feelings of anger, but for him, it could be as simple as a coworker saying good morning. He’d feel like they were all up in his face and had to walk away or not respond in order to keep the rage suppressed. Eventually, that rage released. 

We had just arrived back home from having dinner at his parents. I could see that he was in an episode of psychosis so I drove the car home instead of letting him drive us. When we got inside the house he smashed some things in the kitchen and then grabbed my phone out of my hand and smashed it on the table. I calmly told the kids to get in the car, grabbed the keys and his phone and left. We stayed overnight at a friend’s house. Once again, that was enough for him to see he was out of control and needed help. So we went together to talk to our family doctor. He prescribed an anti-depressant/anti-psychotic drug this time. The doctor also was obligated to put in a report to children’s aid. They came for an in-home visit the following week. 

We discussed a family safety plan. I think it was all enough to make him feel obligated to take the medication. And once again, it was almost miraculous how this tiny white pill brought him back. I felt my whole being give a huge sigh of relief. But for some reason, he didn’t see it that way. 

We had a good three months, and then he started into complaints about the side effects. I honestly think they were excuses. I noticed that the pill number count stopped going down one day, and I asked him about it. He felt he was fine now and didn’t need it. I cautiously said, “Okay . . . will you go back on if you start to feel bad again”. 

“Yes”, was the curt reply I got. Somehow I knew it wouldn’t happen. 

Funnily enough, the rage didn’t appear again. Or he was doing a really good job of suppressing it. That was the one issue that got him to agree to get help.  If that was no longer an issue then all other symptoms were fine in his book. It’s ok that he doesn’t talk to anyone (like not even respond when spoken to). He says he’s changed.  So we carried on and it was kind of like that analogy of a frog in water . . . The boiling frog is a fable describing a frog being slowly boiled alive. The premise is that if a frog is put suddenly into boiling water, it will jump out, but if the frog is put in tepid water which is then brought to a boil slowly, it will not perceive the danger and will be cooked to death.

That’s what it has felt like for our family the past two years. Eventually, I began to realize we were boiling and I needed to find help.

Help was there. But getting help for someone who doesn’t realize they are sick is next to impossible. Short of talking to him, writing, having his parents come and do a group intervention, nothing has gotten through to him. We even did couples counseling because his interpretation of the family problems was that we were having marriage issues. She persuaded him to get a proper assessment done which is how he has a diagnosis now from a neuro psychologist. But his answer to everyone who tries to get him to get help is, “I’m fine. There’s nothing wrong with me. I don’t need medication”. Even discussing separation is not enough for him to get help. It’s like he has lost all normal social and emotional connections.

So here I am trying to wrap my head around the fact that my marriage is most likely over.  I need to do what is best for the kids and me. There is the vow “in sickness and in health” to consider, but when does someone else’s health come before the health of a family. I have spent time feeling depressed myself (though nothing a good Netflix binge, some chocolate and red wine and a good time of rest can’t get me through thankfully).  But I know that many spouses of someone with mental illness end up seeking help for their own mental health, and for the kids also.

I have grieved over the loss of the person I love. There is nothing like having him physically before you but gone at the same time. It’s devastating. It’s grief mixed with hope that then gets dashed because of the system. 

Even our family doctor agreed that the laws have swayed too far in giving individuals full rights over themselves in this condition.  It doesn’t take into

He may lose his job. He is probably going to lose his family (we will always be there for him but we can’t continue to live with him like this).

And nothing can be done. Because he is not a threat to himself or to others. That’s because he has become so good at suppressing emotions that he doesn’t really seem to have any. Not mad, not sad, not anything.

Monica writes about grief and I have gained so much comfort from many of her posts.  I’ve asked her to share my story so that people like me can become part of the “Let’s talk” initiative. I know people don’t have a clue because I certainly didn’t. Until you experience someone with this level of mental illness, you really can’t understand it. It’s grief. It’s loss. It’s painful and frustrating. It’s not really okay to talk about when you’re on this side of the mental illness fence.  That’s why I’m signing this anonymously.

Here is a drawing that our 12-year-old son drew because sometimes a picture tells a thousand words. 

He said, “This is dad. He thinks he is strong but he is really falling apart.” 

  

This is mental illness.

Let’s talk.