6 things I learned from my Sibling’s mental illness

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

By | 2017-10-19T22:24:47+00:00 October 19th, 2017|Blog|6 Comments

6 Comments

  1. Jenny November 30, 2017 at 5:43 am - Reply

    Very loving and inspirational story, Shannon. Thanks for posting.

  2. Mary Roy December 7, 2017 at 3:30 am - Reply

    Thank you for opening this discussion. Families are part of the journey of mental illness and share in the experience of los, the roller coaster ride of recovery and the social stigma of mental illness.

  3. Angie September 22, 2018 at 12:49 am - Reply

    I can absolutely relate to this as my brother has been paranoid and suicidal and estranged and angry and brilliant all at once. With a bit of Gordon Lightfoot playing in the background, this read made for a good cry… I forget to do so and then realize my frozen soul needs to thaw a bit.

  4. April Tang (Barth) October 14, 2018 at 1:14 am - Reply

    Hi Shannon,

    I think our lives have had a lot in common.

    My brother and only sibling died suddenly a few months ago. He was 31. He had schizophrenia since the age of 18.
    A lot of what you said rings very true, though I never felt angry at him. At times, I have felt angry he had this huge burden to carry and manage, and I sometimes wish I could have a sibling to be there with me through my life’s experiences, but then I feel guilty for feeling that way. I’m so grateful to have had him in my life.

    I’m sad, and I do feel a little alone sometimes. I lost my brother. Again. Forever. It’s hard on the heart. Some of me feels like he was set free. Some of me feels like he was taken way too soon. It’s hard to reconcile those feelings. Lost hope, no chance of him getting a little better. I was worried about him a lot lately, as he was exhibiting some risky behaviour, trying to feel better, and that is what is hard to come to terms with.

    For the past seven years I’ve also had a parent also with mental illness, reluctant to admit it to others, and the other parent doing his best to help his son AND his wife, then losing his son. I’ve had anxiety during times of helplessness. I’ve figured out to take care of myself, I know I’m no good to anyone if I’m a mess. I talk about my family to those I trust, and that does help.

    Sending love and compassion.

    April

  5. Debra December 30, 2018 at 8:24 pm - Reply

    Thanks. As the mother of two adults, one who is diagnosed with schizophrenia, I need reminding to sit and care for my ‘healthy’ son.

  6. Barbara January 19, 2019 at 6:31 pm - Reply

    Beautiful!
    The pain is always there – it is the level of impact that may shift. It becomes your very own because it is yours and yours alone to “carry”, to “feel”. Thank goodness in our family, Jeff is a part of our life. We miss his silliness, his business, his tenderness. There are many things I look back and wish I had done differently but there are no second chances. I know, the medical system would say our son’s illness would have happened no matter what, but they are wrong. How often they are wrong? Trust yourself! Of all things, loved ones can not and should not be separated from knowing what a doctor is doing/prescribing, for your loved one.
    It still remains that there is a darkness, a very heavy darkness, that does not allow us to share openly. In the many paths children can take, be strong enough to let your ‘no’ mean ‘no’ and your ‘yes’ mean ‘yes’. Being soft does not teach.
    People with mental health challenges can be much more productive then we know – we have to believe, we have to listen, we have to be open for what they can give.
    That you for putting yourself out there to make a difference. Keep us all moving forward from the silence to a voice.
    With my love

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