Siblings with Severe Mental Illness: Staying in Touch — And in the Loop
It’s difficult to know where you stand when your sibling is diagnosed with a severe mental illness. Their treatment can take up so much time and their symptoms can be so encompassing that there may not be a lot of room for you, let alone your relationship.
The dynamics of the family change after a diagnosis and you may feel like more of a caregiver than a brother or a sister.
My older brother Pat was diagnosed with schizophrenia eight years ago. At that point we were already living on our own. He was finished with college and working full-time.
We had always been close friends. At the time we were living in a house together, so I noticed a lot of the symptoms of his illness when they first began. He became socially withdrawn and quiet. He didn’t like to talk outdoors and he was suspicious that people speaking a foreign language in his presence were talking about him. He only left the house to go to work and he would try to convince me to run his errands for him.
It took more than 12 months to get a diagnosis after the onset of his illness. I faced it with utter terror. A friend I had known my entire life wasn’t there anymore. He was paranoid and unreachable. For the first time in my life I was unable to make him feel at ease, alleviate his concerns, or appeal to reason.
I was a psychology student but that didn’t mean that I knew what was going on. When I took psychopathology, Pat was displaying symptoms but yet I didn’t think his behavior matched up to anything in the DSM. My best friend even pointed out schizophrenia, and of course my response was, “He isn’t that bad.”
Weeks later he was sent home from work because he accused a coworker of spying on him. Our parents went with him to an appointment with a psychiatrist.
At that point, I was just so happy that someone else was involved. I had spent the last year being told that I was overreacting and everyone pretended that Pat’s bizarre behavior wasn’t indicative of anything to be concerned about. My own therapist told me my brother was probably just acting out because I was moving out soon.
Despite the emotional upheaval, life didn’t just stop because Pat got sick. I still had to finish my last semester of college, apply to grad schools and then move out of state to attend one of those schools. Life was supposed to change dramatically for me that year, but it changed in many more ways that I had expected.
Leaving my hometown and my family behind was met with a mixed bag. My grandmother resented the fact that I was leaving Pat behind while he was sick — like he was going to get over schizophrenia the way a person gets over the flu. My mother told me not to worry about Pat, and to put it out of my head entirely.
Less than a year later, Pat went off his meds and had a relapse into active psychosis. He lost his job and moved in with our mother. I was so devastated by the news that I was lost for a while. I couldn’t figure out what to do. My worst fear had been realized: Relapse. I felt like Pat wasn’t getting the kind of treatment he needed and that our parents were completely negligent in taking care of him.
Thankfully, I was physically too far away to control it. I had to sit back and let other people handle it. I pumped the brakes, dug into my own interests and started a life for myself across the country.
Today Pat lives on his own and doesn’t have a job. He’s medicated but still has breakthrough positive symptoms several times a year. He’s anxious, agoraphobic, and doesn’t leave the house. He doesn’t talk on the phone or send birthday cards.
He didn’t come to my wedding last month.
I don’t take it personally. Resentment doesn’t live here.
How do you maintain a relationship under these circumstances? The trick is to meet them where they are at. Maybe they don’t mind using the phone, maybe they like letters, maybe they like it when you stop by with donuts on Sunday. Whatever the case, there is a way to make time in your life. It may seem like there’s a lot more give than take on your part, but relationships like this one require a little more work. When I think about the relationships I’ve tolerated in my life (just think of your former boss), going out of my way to maintain one with Pat isn’t a chore.
We email on a regular basis about movies or music or politics. We aren’t as close as we once were, but I’ve had to accept that. A lot of the more big-picture stuff happening in our lives is communicated to either of us by our Mom, and I’m grateful for that.
“In three words I can sum up everything I’ve learned about life: it goes on.” – Robert Frost
Five years ago, I would have been heartbroken if you told me he wouldn’t be at my wedding. But in the end it was a beautiful, absolutely perfect ceremony despite his absence.
Sometimes I get down about my long-lost friend but that’s normal. There are times when I dream about Pat being healthy again, being his old self. I honestly don’t think that I remember what he used to be like, then I have dream and there he is. I spend the next day feeling like I’ve lost him all over again, but over time I learn to be thankful that I still have those memories.
My advice is to feel it all, all the hurt or sad feelings tied up with your sibling’s diagnosis. Be grateful for your health and insight. Embrace the changes that just keep coming year after year and know that you are strong. Your family is strong. And there isn’t anything you can’t face. The proof is in history.
Flickr image by Travis Swan.
Newman, S. (2018). Siblings with Severe Mental Illness: Staying in Touch — And in the Loop. Psych Central. Retrieved on October 28, 2020, from https://psychcentral.com/blog/siblings-with-severe-mental-illness-staying-in-touch-and-in-the-loop/