I was in the car driving to an event with my then fiancé when my mother called.  You could tell she had been crying even though she was trying to cover up the sound.  Immediately my body stiffened and I went on alert. I knew she was going to tell me news about my brother but wasn’t prepared for her to say that the doctors had diagnosed him with schizophrenia.

Schizophrenia?  I had more questions than answers.  What was it?  What does it mean? How fast will he be cured?  Is it genetic? Over the next several years, I would become very familiar with inpatient psych hospitals, lost moments with my family, and my own questionable health.

As I’ve been interviewing siblings who have a loved one with a mental illness, there are 6 common themes that keep coming up.

  1. Your world can fall apart for many different reasons.  The loss of a loved one.  The loss of dreams.  The loss of hope.  Oftentimes people focus on the parents, as they should because they are going through crisis themselves, but siblings should not be forgotten.  We are grieving as well.  When I realized my brother’s illness was not a quick fix, I started to grieve the loss of my dreams for our future.  He was my partner in crime.  The only one who would know me from childhood to adulthood.  The person who would help me take care of our aging parents.  The one who would have my future nieces and nephews.  When your brother or sister has been diagnosed with a mental illness you feel lost, unsure how to help.  And then if your brother or sister has passed away, you feel all of those losses again but this time you’ve also lost hope, which is the greatest loss of all. Don’t hide your grief from your parents. Make sure to let others know what you need.  Grief doesn’t just disappear with time. It may evolve and you will have to adjust your tools to help you through grief today.
  2. Anger is natural to feel but unfortunately this is the one thing I have found to break families apart.  I remember on my 21st birthday my parents told me that I couldn’t come home because of behaviors my brother was exhibiting.  I was angry with him for separating me from my family.  In my research, I interviewed one brother who he told me his family was blasted all over the media because of his sibling’s behavior, which made him angry and humiliated.  Oftentimes, parents focus in on the child that needs the attention to the exclusion of the other children.  While this is understandable to a degree, we also cannot be forgotten.  I can’t tell you the number of times I’ve had siblings fall apart in my arms because they have realized that they’ve held onto their anger and have lost 20+ years with their brother or sister. They have lost family holidays, outings with their child’s aunt or uncle, and now it may be too late. All I can say is to allow yourself to feel anger but don’t let it define your relationship. No one asks for mental illness.  Try to redirect the anger and turn it into passion.
  3. Friendship dynamics. It can get a bit interesting when on a Friday night your friends are going to happy hour, but you need to go to an inpatient psych hospital to visit your brother instead because that is the only time the hospital allows for visitation.  It can also become hard to relate when your friends ‘problems’ seem almost silly compared to you feeling like you are in a constant state of fight or flight.  Unsure if your brother will survive another day.  Unsure if your parents can handle the stress.  Talk about it and if your friends start to squirm because of their own stigma towards mental illness, it is time to make new ones.  One of my friends actually came with me to visit Jeff.  It meant the world to me to not feel alone and have another person experience the loud clicking sound the exit doors make when they lock as you are leaving the person you love behind. Roughly 80% of families have more than one child and 1 in 4 families have a loved one with a mental illness.  There are plenty of siblings who will understand what you are feeling and will be there for you.
  4. Communication: A common mistake I think siblings have is they don’t talk to their brother or sister who has a mental illness. They are concerned about ‘rocking the boat.’ I get that. My brother used to go through times of self-harm. It is one of the scariest things to experience. He wouldn’t eat and was destroying his knees. We all lived like we were walking on eggshells. When he was well and taking care of himself, the last thing you want to do is inadvertently say anything that would take him back to that dark place.  While that is a real fear and one that I totally understand, many times your brother or sister is stronger then you are giving them credit for.  My brother was the strongest most courageous person I know. Anyone who has to deal with the stigma and discrimination that comes with the label of schizophrenia is beyond amazing!  One time he started rambling about God in a way that I couldn’t follow his thought process. I told him flat out that I didn’t like it. He looked at me. Saw the pain and fear that I was experiencing and said, ‘ok’. From that point on, we started to talk about his illness, life, etc… And when I starting acting too much like a mother, he said to me, ‘Shannon, I need you to be my sister.’ So, talk to your sibling. They are stronger then you think so let them tell you that it isn’t a good time to talk right now. But don’t assume. Miscommunication leads right back to anger.
  5. Self-care: At one point, I was working full time, my brother was in crisis and going through self-harm, and my dad had a heart attack. My body and brain were not in a good place. I couldn’t sleep due to worry, I wasn’t eating healthy, and I was feeling run down. Don’t forget what the flight attendants tell you on the airplane. Put your oxygen mask on first and then assist your loved ones.  Take your B12 vitamins. Practice deep breathing exercises, there are plenty of guided apps out there.  And let’s be honest, while there maybe some moments you can look back on and laugh, like having a brother strip naked and run down your neighborhood, there are some traumatic moments as well.  Talk to a therapist, a friend, you are not alone.
  6. Survivors guilt: This is the most hidden of all 6. Why my brother or sister and not me? Will it happen to me? Sometimes, I hear siblings say things like why can’t they just snap out of it?  Honestly, I think some of that is driven from a place of fear and guilt.  We grew up in the same house, had the same parents, why was I spared and not him.  This is probably something I am still questioning.  It made me question my faith.  I don’t have the answer, but I do know that it is not your fault.

After my brother was killed and after the funeral services, a friend of my fathers came up to him and said, ‘well aren’t your relieved that you don’t have to take care of ‘him’ anymore?’  There is nothing about my brother that I would have changed unless he wanted it.  He was not less of a brother for having an illness and he taught me so much.  His struggles made me a better person and for that I will always be grateful.  The only thing I would change is having him here to be an uncle to my two daughters.

To all the siblings out there.  Know you are not alone.  Take some distance when you need it but don’t stay away.  I can’t stress communication enough and I would love to hear from you and what your sibling experience has been in order to help others through their journey!

Sincerely, Shannon