My husband asked me to do a post about what it’s like to be a spouse of someone with schizophrenia when he first started this blog. It’s taken me a while, but here it is! I am not the articulate, polished writer he is so prepare yourself for lazy writing and grammatical errors! I feel like to do our story justice I need to break it into two parts. All good love stories have lots of twists and turns, and ours is my favorite!
The way my husband loves me is nothing short of magical. From the very beginning I have known that I am so lucky to have found love like this. He loves me without distance. Without barriers or walls. Just completely, with all that he has inside of him. If you’ve never experienced that kind of love, it’s hard to describe. To be fully seen, supported, cherished, accepted, and loved completely is the most wonderful feeling. We have something unique and special, and I’m so proud to be his wife.
Our story begins 9 years ago. We had a comical amount of conversations about how long we were going to married before we had kids, how many years we were going to space them out, what we were going to do with our kid free newlywed time. We had it ALL planned. Then, two weeks after we got married we got pregnant with our daughter. When she was 4 months old, we got pregnant with our son. So much for plans! Now we know the timing was perfect. I am a cancer survivor, and had taken a break from treatment to get married and let my body recover before finishing the last step which would stop rapid cell development. You stop rapid cell development; you stop having babies. We didn’t even know if I could get pregnant! But we did right away. My pregnancies were high risk and very difficult. For the first three years of our lives we mostly just tried to keep me alive through serious pregnancy complications and a year of chemo treatments. But we won! We have two amazing, healthy children and I am cancer free! Hellz yeah!
I was so focused on other things; I didn’t notice when my husband started having trouble. I don’t have a day to point to and say “That’s it! There’s the beginning!” But I do remember the day I sat him down and told him he had to seek out professional treatment. With amazing clarity. I remember where we were, what he was wearing, everything. The first three years of our marriage were focused on keeping me alive, and the next three were trying to figure out what was wrong with my him. We were both so convinced that it was something physical that we never considered anything else. He would gather information nonstop on the internet and then convince us both he had figured it out. Then he would convince a doctor. When whatever it was (acid reflux, GERD, rhinoplasty for deviated septum, asthma) failed to be the magic bullet that made him better, it would get a little worse. He just didn’t feel good. Flu like symptoms, excessively tired, insomnia, at times he couldn’t breathe. It was oppressive and vague. What remained consistent was how important secrecy was to him. He didn’t want to worry anyone until we knew what was wrong. It made sense at the time. But slowly it got worse, and without realizing it I began to feel very isolated.
This is also when I started noticing some delusions. It was so mixed in with rational thought that it was so easy to dismiss. He started sleeping on the couch because he had insomnia and claimed to sleep better if he fell asleep to the tv. It got to the point where he hadn’t slept in the same bed as me in months. Then it started seriously affecting our daily lives. There was always a reason why he couldn’t get off the couch. Why he couldn’t be around my friends when they were over. During the holidays, he couldn’t wake up to help the kids and I decorate the Christmas tree. I forced him to move into the room where the presents were, but he didn’t even watch the kids open their presents. He went back to sleep. I forced him to wake up and eat Christmas dinner I had spent hours making. He didn’t even wait for us to finish eating before he went back to sleep. On Halloween, the following year, he had a complete breakdown.
That morning was so normal. We drank coffee before he left for work. He was tired. I chatted about how I was going to balance being at our son’s preschool class party and our daughters kindergarten one. Later that day while I was driving from one school to the next, he called me.
He said “I have to make this quick. I’m not supposed to be able to make calls. I’m going to a 30 day inpatient program. I’ll call you when I can. I love you.”
That was it. He was just gone. So, I faked a smile through the next party, trick or treating that night with the kids, but the whole time I was silently panicking. The next day we dropped off some clothes and things at the hospital, but I wasn’t allowed to see or talk to him. The day after that, he started calling. A lot. Only it wasn’t my husband. It was like he was someone else. He was paranoid and screamed at me and called me names. And he wouldn’t stop calling and texting me. 15 phone calls, 30 long text messages. Over and over and over again my phone would ring. Horrible, hurtful things. I was in complete shock. All I could think was what am I going to do? I can’t have him around our kids! I had quit my career when we got married and was a stay at home mom. What am I going to do? I knew things were hard for him, that he had been struggling, but I just assumed at some point he would snap out of it. I focused all my energy on keeping it happy for the kids so they didn’t notice anything was wrong, and then sobbing as soon as they were in bed. On the 5th day, I called his parents. They were even more shocked than I was because we had kept them so in the dark about his struggles over that past few years. And they were amazingly supportive. Immediately there to help in any way possible.
Things during this time started happening very quickly. My primary concern was my kids. I had thought I had kept them insulated from their Dad’s depression, but I hadn’t. On the second weekend after he left my in-laws kept the kids overnight so I could get some rest, and my 4-year-old son had his first panic attack. I didn’t even know children that young could have panic attacks! After that horrible first week of inpatient treatment, my husband started calming down. Somewhere during his second week, he started to sound like himself again. And then he embraced the process and started verbalizing some the things he had been not telling me. Like he was suicidal. That he had past trauma. I was so proud of him for getting help, for focusing on getting better. But there was also a part of me that felt like everything, our whole life that we had built for us and our kids, was falling apart. We lived in a beautiful house, had amazing kids, and my husband wanted to kill himself. It was hard to fit those together.
He came out of impatient much more stable, able to safely come home, but was still being treated and medicated as bipolar. He still wasn’t feeling very stable. We found a fantastic child psychologist for our son, and he showed immediate improvement. I’m very happy to say he hasn’t had a panic attack in 3 years! When it was time for the Army to move us to our new location, my husband was still having several panic attacks a day. After that initial surge of honesty we had when he was taken to the inpatient program, there had been no follow up conversations with his parents. To this day, they still don’t know how much he struggles. So we moved here with his support network being exactly one, me. And my support network being zero because he wasn’t comfortable with other people knowing everything. Initially when we arrived at our current location, things got much worse. Multiple panic attacks every day, some unsettling delusions, and an incredible amount of anxiety. After several very tough days, he finally opened himself up to letting the professionals revaluate him. That’s when we got the diagnosis we currently have: Schizoaffective disorder, avoidant personality disorder, PTSD, OCD and panic disorder. We seem to be on the right path. The meds are working; he seems more stable then he has been in years. But how we are doing and what we face on a day to day basis is for part 2!
Thank you for your patience in reading about our journey! I had times when I felt so alone, I hope this helps someone else. Loving someone who fights mental illness can be difficult, but I would rather be by his side then spend one day without him. Our life, our future, is worth fighting for. And I’m not giving up.