My mom has schizophrenia.
But sometimes I’ve been jealous of other daughters whose moms have cancer.
Yes, I said it.
Cancer gets acceptance.
Schizophrenia gets questions and judgement.
Cancer gets meal trains.
Schizophrenia gets isolation and lost friends.
Cancer gets balloons and rooms decorated in the hospital, and flowers and visits.
Schizophrenia gets locked doors in state hospitals and cell phones turned in at the nurses station. No selfies with mom allowed here.
Cancer has clear expectations. It will be terminal, or treatable.
Schizophrenia might mean functional periods or homelessness. The future is wildly uncertain, daily. It might last a few years, or decades.
When cancer looks like cancer – hairlessness or swelling, sunken eyes or weakness, we understand.
When schizophrenia looks like schizophrenia, mumbling to unseen people on the street or urine soaked and manic – we turn away.
Time taken off to care for a relative with cancer is difficult, but understood.
Time taken off to care for a relative with schizophrenia is met with skepticism, judgement and suspicion.
If an ambulance is called to take a very sick cancer patient into the hospital, it’s scary and traumatic, but is handled gently and professionally.
If an ambulance is called to take away someone with schizophrenia, sometimes it doesn’t come. Instead a patrol car arrives. There is no stretcher, but often handcuffs. Sometimes the cops make small talk and laugh on the sidelines. You might overhear “she’s a regular,” from one of them. Sometimes no care comes at all.
Cancer patients get a team of doctors who work closely with the family members to make a support system.
A person hospitalized for schizophrenia sometimes has trouble even using a phone to get connected to their relatives. Sometimes relatives cannot even get ahold of them without a “code.” Doctors, nurses and social workers who actually return phone calls are a rarity.
When a person has cancer and is suffering greatly, nobody asks the family why they are allowing their loved one to suffer this way. Nobody questions that everyone loves and cares for their relatives with all their hearts.
When a person has schizophrenia is suffering greatly, the caregiver is often questioned. “Why is she living this way? Who is cleaning the house? Why is she in the street again? Where is her family?”
Cancer can lead to long years of enduring pain, suffering and death.
Schizophrenia can, too.
I’m going to tell you honestly, writing this makes me very uncomfortable. I do not like comparing suffering, because suffering is relative. One person’s hangnail is another person’s broken leg. My mom’s schizophrenia is not more or less than your mom with cancer.
I get it. If my mom had cancer, it would be heartbreaking and awful. I know this because I can have empathy for people with cancer and I can relate to the grief and heartache their loved ones are enduring, also.
I can have empathy for all suffering people, with any type of disease.
But there is this sad thing that happens when it’s a “mental” illness. We suddenly draw weird lines about who gets our compassion and who gets our judgement.
I would not have batted an eye to say “my mom has cancer,” when I was growing up. But I rarely told people so boldly “my mom has schizophrenia.”
Even as a child, I knew it was a disease unlike others.
If I had a hospital story about “the time my mom had a heart attack,” or the “time my mom was going through chemo,” or the “time she got in a bad car accident,” I would not be afraid or ashamed to describe the experiences.
But my hospital stories about “The time she drank bleach,” or “the time she was shackled after being naked in the streets,” are reserved for the closest of friends.
Here are the things my mom with schizophrenia has in common with your mom with cancer:
She loves me.
She wants respect.
She needs dignity.
Compassion and empathy are important to her.
She’s suffering sometimes, but not always.
Her illness can be frightening and overwhelming to her.
Her illness can be frightening and overwhelming to her family, too.
She did not choose her disease.
She is not defined by her disease.
She is a human being.
I love her, just like you love your mom.
I love your mom, too.
Amen. So much truth here, so much painful truth. The truth you write is my life, my experiences with my mom, that I hear my voice when I’m reading your words. The truth needs to be spoken, shared. THANK YOU for your truth, my truth, the truth!
Beautiful. Perfect. Exactly how I feel. I have cancer. I also have bipolar disorder. I have so many other auto-immune diseases. But recently I’ve been dealing with cancer, and I couldn’t express what you’ve just said ANY BETTER. My first day of radiation, I told the therapists there that I was overwhelmed with the $ and level of care I’d recently experienced, as in 30 years of healthcare experience, I’ve NEVER had anything close to it. Cancer sucks, yes. But there is such an incredible disparity between the awareness, money and treatment it gets and any other disease, really. Especially mental illness. I totally validate every word you just said, and I sit beside you quietly in agreement as we go along this journey. Sending love to you and each member of your family.
This made me cry because I can relate. My daughter has suffered with addiction. For years I kept it to myself for fear of having to hear the judgemental comments of others. I knew only those with a socially acceptable disease received the love, compassion and understanding of others. I knew most would want to stay far away out of fear and ignorance. I too saved the horror stories of her addiction for a select couple of people who stood by us. I love my daughter and I love your mom too…..they keep us humble.
I have said this identical phrase maybe thousands of times for years. I am with you in your fight. One thing I’ve always said that I find most devastating is that most often- not always- cancer does not change who a person is- most often someone with cancer remembers their family members, they don’t try to harm their family members or themselves. You are not alone in wishing that ‘if only my mother had cancer instead’ I am with you.
Thank you for sharing your most personal feelings. I do have cancer and I have empathy for your Mom, too. I think it is very sad that all medical conditions are not viewed the same. I wish that your Mom and your family would receive the same care, respect and understanding that I have received. My disease and your Moms disease are both equally horrific so they should be cared for equally. My biggest wish for your Mom is that there would be a way to provide her treatments and a cure her awful disease. More research should be done in finding a way to help these patients and not just over medicate them and hope for the best or worse yet just ignore them. I think it is admirable that you are sharing your story and raising awareness about the condition. I am sending many many hugs and good thoughts to your Mom and your family. .
Nothing but the truth every last word!!!
This has me in tears. So well stated. My daughter was diagnosed with cancer at age 12 and my husband has suffered from mental illness since his late 20’s. I completely understand.
My heart goes out to you. I live this daily not only with my own mental illness (I am bipolar ), but with my daughter’s. We should never have to be ashamed or judged for what is beyond our control. My love, thoughts and prayers go to you and your mom. Bless you for all that you do.
This morning my mind was reeling about just how was I going to make things right in my world where my bipolar has caused devastation and chaos once again. Who was I going to connect with, how could I possibly not feel so alone on this heart wrenching journey? How could I accept the fact that my family members, mother, brothers and sisters and most gut wrenching, my children have stopped all communication with me? If I could somehow get my life to a level of success, maybe they would speak with me. Then I came across your loving, thoughtful and at times gut wrenching honest comparison that I have lived for my 49 years. I am bipolar, I had a break into psychosis in August, my family has not been there for me, they have turned their backs and that hurts the most. Its not the “public” that has judged me but the ones closest to me, the ones who are family. God bless you and your brother and all the people who love those with brain illnesses.
My son is struggling with drug addiction. What you describe with your mom is so very familiar to me, and heartbreaking. I understand completely the ache of sadness knowing that there is only so much you can do…the ‘shame’ of the disease…the fear of family and friends…the judgement and distance, the pity. My heart is there in the trenches with you and your beautiful mom…and with my sick and beautiful son. Please keep writing.
Hi, I just stumbled across your blog, and this is such a moving read, my heart goes out to you and your mum. This illness is so cruel, and it breaks my heart when people make thoughtless comments just because they don’t get it/they don’t understand it. It is as tragic, debilitating and terrifying as cancer- and it should get the same responses and treatments, but, as you’ve explained, it doesn’t. I only hope that as more and more people inform more and more people, it will in the future. Take care.
This blog entry IS myself and my brother and my mother. TO A-T. I am shaking because I have said these words not only out loud but in my head and on paper. My mom ended her life by suicide on 6/1/13 after a 25 year battle with Bi-Polar Disorder. Is there any chance you can email me? I would love to chat with you. On 12/1/16 I am chairing the first ever black tie gala for mental health awareness here in Pittsburgh! We are so excited!!
Thank you for writing this.
Totally agree i have seen both sides with a mother who is schizophrenic and no in our family offering to help as they believe she needs to help herself. I have watched several family members go through cancer treatment and everyone jumps to help in any way they can
Thank you for writing this. It was very eye opening.
Thanks for sharing. You don’t understand unless you’ve been there in the trenches with a family member. Can’t put it in a box or explain it. Prayed for you tonight. -Clara
My mom has cancer. I felt like my experience was already bad. This is so much worse. I am sorry that your mom doesn’t get the treatment she deserves
I have schizophrenia and it is so isolating. Not being able to be honest with people about why I disappeared, having to hide the reason I am struggling in life. Often I have laid down at night and thought the same as you, I wish it were cancer because then I could announce it to the world and not have to hide my struggle