With Mental Illness in the Family, You Don't Get Lasagna
Let’s say you are a Mom, just diagnosed with breast cancer. After the shock wears off, you get on the phone and quickly connect to a network of knowledge given you by friends and friends of friends. You get names of doctors, surgeons, hospitals; you learn about treatment options. Friends and family visit; out-of-towners send cards and flowers. People you hardly know stop by to deliver meals. You are supported by friends and family; confident in your health care choices.
Let’s say you are a mom, and your 19 year old daughter is asked to take a leave of absence from college. The dean of students suggests she may have serious depression. After the shock wears off, you get on the phone but this time your friends and friends of friends do not offer up a network of knowledge. It is up to you to find a doctor, a hospital, a treatment plan. Some friends don’t return your calls. Family members shy away. Many don’t ask how your daughter is doing; even fewer reach out directly to her (as if mental illness were somehow contagious by inquiry).
Soon you discover, to your surprise, that there are no set treatment choices. Your daughter starts with one doctor, then moves to another; medications change; therapy evolves. And not one card is received. No one visits. No fruit baskets, no flowers, no casseroles.
With mental illness in the family, you do not get lasagna.
With Mental Illness, Families Left to Fend For Themselves
I am the Mom in the second paragraph. And I know I am not alone. If you are a parent in a similar place, you too may be frustrated with the lack of definitive solutions in the world of mental health. It becomes your responsibility to become well-informed, to learn all you can about psychiatric medications, therapies and programs, to become an "involuntary expert" in the field of young adult mental health.
And like me, you have watched while your young adult rides the rollercoaster of their mental illness. You have tough choices along the way - when to step in to help - and when to back off and let your young adult child chart his or her own path. If you can’t rescue your own child, some parents turn to advocacy for others, as I do. I also started a support group for other parents of children with mental illness which I find immensely helpful.
But in the back of my mind, I still remember that missing fruit basket, and the lasagna that never showed up on my doorstep.
Note to my friends and family - and to yours: deliveries still accepted. Support welcome. And I still love lasagna.
This article was written by:
Nancy L. Wolf is a parent, lawyer and young adult mental health advocate. Nancy created and runs a support and resource group on Facebook for parents of young adults who struggle with mental illness. You can also find her tweets @_nwolf.
To be a guest author on the Your Mental Health Blog, go here.
Author, G. (2013, April 28). With Mental Illness in the Family, You Don't Get Lasagna, HealthyPlace. Retrieved on 2021, May 16 from https://www.healthyplace.com/blogs/yourmentalhealth/2013/04/with-mental-illness-in-the-family-you-dont-get-lasagna
Author: Guest Author
My adult son suffers from scizophrenia and has been in hospital from March so for 7 months. Other than myself, my sister and my nieces and nephew no one had visited or sent cards or anything else to him. My heart breaks for him as he blames himself for being ill - 3 suicide attempts yada yada. Today a church "friend" came into my work and mentioned she hadnt seen me I. Church for s while. I told her he has been in the hospital for the past $ months so I have been visiting him in the weekends. I didn't sY a word about his iness. It has made us both invisible. That is the only way society can deal with it-to ignore it
Like I said, people are so fake it hurts! The same ones who were visiting you in the hospital if you had cancer, are the same ones leaving you if you spend time in a psych ward. Tell them you can see right through their fakeness, pick up a book, read about mental illness and stop hurting people's feelings.
I would tell those people to [moderated] off! If they're going to be mean and nasty to you when you're ill, but only care about you when you have cancer, then they're fake people that you don't want around.
Are they acting in a Christ-like manner to all of those who are hurting or only towards the ones that they really care about?
When my son was diagnosed with schizophrenia I too was devastated. I then though one he was on medication all might be well. When that did not happen I went looking for something else. The result is a not-for-profit group formed called Bio-Balance Health Association and we run a training for doctors for Mental health and Austism on the Gold Coast in Queensland every year - now have 140 doctors trained who declare the protocols have profoundly changed the way they practise medicine.
It has helped a lot of people - check it out -www.biobalance.org.au Not my son - he refuses to try it.
Found your story and the comments Linked to it VERRRY INTERESTING & SADLY TRUE. THANK YOU FOR POSTING YR STRUGGLE. Those of us ASSOCIATED w/ a #SMI - aka - #SERIOUSMENTALILLNESS know how trying and sometimes fataL it is to carry around the Load of it! That's preciseLy why sooo sooooooo many peopLe don't get heLp or put that camo cover-up on and pretend to be someone there not. And then one not so fine day catches up with the pretender during one of there survivaLacts :'( and It's so frustrating to see this and truth b toLd I've done it before. As have many others. Trying to cover-up an illness with a remedy of Lies and short comings is Like trying too put uh bandaid on Aids. No matter how strong or how many you put on, AIDS IS STILL THERE!!! AIDS KILLS as does putting up a fake seLf image when others are JUDGING or threatened by your SMI. #SUICIDE
That peopLe with SMIS ARE NEGLECTED adn viewed as tho they Choose to b Unhapppy...forgetfuL... Distracted etc. We're viewed
Like we just I've the option to turn it off n on. Ignorance. There simpLe minds compare our illness to there bad days...Like they dropped there ice cream cone but heLd back there tears and saw the siLver Lining in it & we can do the same but choose not to bc were drama or Lazy.
For me the stigma is worse then the disease. Teachers and employers don't know how to make reasonable adjustments and you are often put in the too hard basket,
For me the salvation was connecting with other consumers. I urge family to connect with any Carers support groups ( in Australia some examples are ARAFMI and Carers NSW), and making friends with consumers can happen though many sources but I recommend support groups. Having friends with people who have mental illness means mutual support. At this stage most of my friends have a lived experience of mental illness it wasn't planned that way but my friends are so amazing and I am greatful that we understand each other.
I feel most sorry for those who get most of there support from church groups. It's been my experience that athiests groups are more supportive.
I have never received flowers, cards or had my parents get good when I was in hospital. My extended family did visit though and even though I know they love me there was still stigma there for example I am usually not asked to babysit. Many of my relatives are in denial about their own mental illnesses. Some would prefer to have a bad physical illnesses then even mild anxiety because of stigma.
When a friend was sick he said " you know who your friends really are by who visits you in a psych ward".
I am 47 years old. I have suffered deep depression off and on since age 16. In recent years I have been diagnosed as bipolar 2, ADD and with post traumatic stress disorder. I agree that people avoid you when you have mental illness. It is funny but when I was a kid I had lots of friends. I had strange fits of anger and stuff, but friends always accepted me. I guess as a teen, I looked cool for being tough. Now I am old and I have had a real struggle the past 4 years with wanting to die and suicide attempts. Now I am on disability and everyone in my life thinks I am a terrible person for not earning my own keep. I wish I could! I would feel so much better about myself if I was working and making money. When I get depressed my family just thinks I am lazy. People without depression have no sympathy and don't understand being so unmotivated. They right you off because they are so judgemental if you aren't setting the world on fire with your ambition and tons of money! It is hard to like myself as it is, then to have people misjudge my motives and dislike me for my mental illness, it makes it even harder to keep up the will to live. I feel bad for what I put my parents through. They are trying to be supportive and I know it is difficult for them. Being the one with mental illness brings with it a lot of shame and embarrassment. I wish people would be less judgemental about it. I think it is funny how people accept you, until you actually go to a shrink and try to improve yourself! Once you go to the mental hospital or a Shrink, then people think you are crazy. But if you act crazy and don't go to get help, people think you are ok.
I am so thankful to finally have a name for my struggle. My 3 children have all had mental health struggles. My middle child has attempted suicide twice, and they have all had numerous hospital stays. Throughout this time, I have lost many friends who could no longer handle my children's behaviour. One was a very close friend whose husband is a psychiatric nurse.
In particular, during my daughter's first suicide attempt and hospitalization, I remember feeling totally lost and angry. At the same time as I was dealing with my daughter, another family at our church had their 3 yr. old diagnosed with Leukemia. Everyday on Facebook I would see their posts about all the great things people were doing for them-gas cards, grocery cards, casseroles, flowers, house cleaning babysitting other sibs. Me, nothing, nada, zip, zero, zilch. Not even an acknowledgement of the pain and struggles we were dealing with.
That was 3 yrs. ago and the sting still hurts. I choose to believe that this is out of ignorance and not because they feel our struggles are any less.
I go out of my way now when I hear about other families dealing with mental illness, to acknowledge them and their pain. Someday I hope we won't see any difference in how we respond to families in need.
My family never leaves me when they learned I have anxiety disorder. From what I see it even strengthen our bonds.
Its such a shame, I have depression... and my parents avoid the topic like the plague.
I'd do anything for the support and compassion from my family. oh well
I have found the same to be true when one of my daughters was diagnosed with a serious mental illness, but i harbor no resentment or ill will towards my friends and family members. Some folks are terrified just by the word mental illness, other folks maybe have had a family member who also had a mental illness, maybe it was their father and the end result was trauma for the entire family. Now they don't want to think about it or talk about for fear that they will end up like him or they go into denial and say his mental illness was not a mental illness and on and on it goes.
I didn't really understand the suffering someone goes through when mental illness hits a person until my own daughter was diagnosed. I saw the suffering in my daughter's face and also her sometimes self-destructive actions to try to help herself. It's a life long struggle and there are good days and bad days. Thankfully I do have a couple of friends who care enough to ask me how my daughter is doing and I tell them as little as possible because I don't want to overwhelm them or freak them out but I appreciate that they ask. I was forced to learn how to help and advocate for my daughter and probably know more about mental illness than the average person. It wasn't easy to find help. It was like looking for a needle in a haystack -- at least it is true in America -- however I did find the needle in the haystack and it snowballed where I was able to surround my daughter with a very good support system. She has a great psychiatrist, caseworker, therapist and I finally managed to have her and her family (yes, she has a husband and two children) live close to me so I can help at a moment's notice. Thankfully she has a wonderful life partner who also has a mental illness and they are very protective and supportive of each other Not all folks with mental illness find partners and more often than not live very lonely and isolated lives.
Thank you for bringing up this subject and allowing me to express myself.
A lady from church who I had on my facebook asked how I was doing since I hadn't been in church awhile and I just wanted to finally be honest and what a big mistake. I told her what my dx was and shared a site on here of what I am dx with and she never responded. Just total silence as if I now don't exist or worse yet maybe she thinks I am the devil or cursed by the devil. It hurts, it really does. I am blessed with 2 wonderful friends with one having had mental illness but is now cured and both of my friends support me. I suffer from fibromyalgia too and there is no one that helps me while I suffer in bed except 1 sister. I certainly would accept lasagna!! Good article and thank you :-)
Nancy, this is a great post. Sufferers of mental illness know this, but, people are, generally, ignorant of the facts.
I learned because of my own experiences NOT to tell anyone when the kids hit puberty and starting having issues. Thankfully the kids grew up with a "crazy mother" who takes meds and sometimes goes to therapy. So they don't have any issues with going to therapy themselves. But that rule of secrecy is sacrosanct. We don't even tell their friends and we don't tell the school. When I have to take them out of school for a therapy appointment then I just write a note for a generic 'appointment'. We are very matter of fact about it inside the household but they know not to mention it to anyone outside the house.
Hi Nancy. I absolutely loved your article. I call mental illness of any kind the 'no casserole for you' disease. Because as you point out, the phone goes silent, friends get scarce, and things become weird socially. I am a life coach for parents of kids in psych treatment, and this is one the big things that parents have to deal with. The loneliness is tough!
Thanks for sharing your insights on this. It is good for others to see that they are not the only one that this happens to!!
I spent a day having outpatient surgery for a minor medical issue. I got cards, flowers, and help at home while the stitches healed.
I spent a total of 20 days in an inpatient psychiatric hospital. I had two visitors. I was out of work for 8 months. Nobody sent cards or flowers. When I returned to work, it was mandated in an official letter that I needed to wear long sleeves to hide my scars.
There SHOULD be lasagna. And better treatments. And less stigma. Bless you for so eloquently summarizing the personal experience of so many of us, whether we are the parent or the child.
I had to take a four-month LOA due to depression. Not only was I ostracized, some coworkers used it as a way to blame me for things that went wrong that I was only remotely involved in. Nobody would ask how I was, citing "corporate policy". It got so bad that I left six months later for a new job.
The experience to be a parent of mentally ill child exhibits unusual and fatigued life experience as well. There are many provocative and intrigued psycho-social circumstances, which ones burden our sensible emotional state. Among them the feeling of guilty, shame, shy and compassionate consist the stem of traumatic psychological suffering. On the other hand, the sense of social expulsion surround whole deprived social network system. These and many others hurtful psycho-social moments contribute to grow up parent's bad and painful emotional experiences. Your comparative observation on parent whose suffers with mentally ill children indicate are an illustrative example. In consequence, it ought to undertake serious step on improving the emotional difficulties of parents with mentally ill children, in order to soften the disturbing familiar milieu of families with mentally ill member, particularly mentally ill children.
Reply to Diane who posted a response: THANK YOU for posting your story. I don't feel so alone. It is so difficult navigating resources for my husband who also attempted suicide. My spouse gets lost to the disease and I have to remind myself of his illness. I don't know how our story/journey will end. I am hopeful but realistic. Thank you for your understanding and continued support of families struggling with these illnesses. NAMI has been great but we have so much more to do!
Currently age 41, I've been surviving trauma since abandonment by my mentally ill birth parents at age 1 1/2, in Sapulpa Oklahoma 1973.
Declared Ward of State I was hospitalized for "Failure to Thrive" and not really expected to survive, however it was at this juncture in my childhood that I began showing my will for survival by defying the odds and statistics of the "ignorant therapists and psychologists of the 70's and 80's".
I can speak on behalf of a Adult Adoptee who endured a terminated adoption , as an now-adult Foster Child who was failed by the OK State Foster Care System, and also as a single parent for the last 15 yrs who went from having it all, to losing it all, and I MEAN ALL in a 5 year period after my PTSD, PTED, and BPD became such that i lost total daily functioning capabilities, landing me at my resentful and confused parents' house with my 12 yr old, with no job, no friends, no vehicle, and literally begging DSHS to grant my Mental Health Eval and Dis Eval that i had been requesting for several years leading up to this crisis.
From marathoner, parent, and 18 yr admired medicare irs adjudicating and coding and billing trainer, the way i preferred my life and career, to NOTHING.
I not only battled and survived ovarian cancer during appeals process for wrongful firing from my new job, but 7 yrs later, after fighting as my own advocate and educating myself first, and then my trusted family physician (who took me 20 yrs to find), i am now the founder of 5 crisis support groups and advocate daily for many non profits as well as writing book 3 of a 5 book series depicting the trauma i have experienced through each life phase...all as a form of my own therapy.
Without the help of the groups that i myself founded as a way of gaining understanding about myself and interraction with others, which i presumed was the basis of my combination of issues and symptoms resulting from my Co-Morbid Diagnosis so that i could find other survivors, who like me, had lost their career and livelihood through demise of daily functioning capabililties, others who just like me, had been given the reputation between friendships and working relationships, that I "Am Irrational, Aggressive and Defensive when conversing with other people"...and "I dont play well with others"....
without the validation and support of the crisis groups that i have created as well as the new non-profits popping up everyday now, that i have been participating as a survivor in, and pulling double-duty as a crisis responder, through writing and vocalizing and educating women and children locally in my own community, I SIMPLY WOULD NOT BE HERE TODAY TO SHARE MY KNOWLEDGE AND COMPASSION.
It wasnt working for me to wait patiently, after the 'severely mentally disabled' patients received the care and benefits they needed for themselves
while it appeared that as a homeowner, parent and career woman, i had my life together...NOBODY WAS OUT THERE LOOKING FOR ME WITH THE NOTION IN MIND THAT THEY HAVE THE ANSWERS TO THE QUESTIONS THAT HAVE PROHIBITED ME FROM FORMING THE HUMAN BOND THAT I HAD NEVER FORMED WITH ANY HUMAN BEING, UNTIL I BECAME A PARENT AT 21.
Facing the combat veterans diagnosed with PTSD, I was continually challenged, and allowed myself, (it is a choice) to become publicaly defeated during debates and interacctions with veteran survivors, which almost forced me back into the 20 yr isolation i hate created for myself...only every single day for this first 5 yrs, was my ROCK BOTTOM.
I know have many combat war veteran survivors who participate in my writing therapy and also offer their own support for a United stand on treating those diagnosed with PTSD, EQUAL - Periiod. No matter how you have inherited the symptoms, the loss of life is still as plausible in later adulthood, if remaining in denial about abuse and trauma.
That was one STIGMA that i have made a respected name for myself in and captivated a supportive audience in...
The Other..."MENTAL ILLNESS RELATING TO DUAL DIAGNOSIS WITH PTSD AND FIGHTING LEGISLATION AND CONGRESS TO FORCE BETTER REVIEW OF BUDGET $ AND WHAT DEFINES 'DIS' IN RELATION TO 'SOCIAL SECURITY AND DISABILITY BENEFITS' as rec'd through DSHS, NAMI, ISTSS, and other agencies designed with good intentions, but just like in the case of the OK State Foster Care System, 'Easily Corrupted and Failing".
The leaps that i have made in how i cope with others, how i relate to those around me, (my ex bf whom i currently live with as a single person, has anger management issues, so daily anxiety is present for me), and what i now allow myself to accept or rid myself of, IS FINALLY IN A 'DOABLE' AND 'WORKABLE' status.
I can say that the daily gratitude and the many silent reposts and shares from my writing and group work, just knowing that i am helping others to take that first crucial step towards validation, HAS BEEN MY HEALING SOURCE.
Do i have many 'friends' that i go see each week or month?
NO, I DONT. I RID MYSELF OF THE FALSE PROPHECIES OF THE TOXICITY BRED BY THOSE WHO I HAD IN MY LIFE FOR 20 YEARS.
I do however, have over 20,000 friends and supporters, on-line.
Most of my fellow survivors have agreed that if it wasnt for them finding my ON-LINE, private, crisis support group, THEY WOULD STILL BE IN DENIAL.
Thank you to everyone who took the time to read my guest blog and post your thoughts. The more support we can give each other by sharing our personal stories, the better.
I also want to use our "parents of young adults who struggle" Facebook page as a space for the sharing of resources and strategies. Please join us there (and to Fran, my young adult is also "non-compliant").
The stigma will only go away if we speak loudly, but politely, and often, and explain to others that mental illness is a disorder of the mind just the way diabetes is a disorder of the body - not curable (yet), but treatable. And definitely not contagious!
Let's keep talking - and fight this together.
I read through the comments quickly and I didn't see the mention of NAMI national alliance of mental illness. They are in every state and offer an array of help from support groups to educational classes for people living with a mental illness and families living with someone with mental illness. I encourage everyone to check them out. http://www.nami.org/template.cfm?section=your_local_nami
my son is scitzo effective ..the closed doors are endless ! not only friends and family ,resorces- government and privite. the endlessness of what doesn't work and what makes everything worse still .. no mental health facility will keep him long enough to even find out if there is going to b a reaction to what ever drug they want to pass along to him . the trips to the er when it doesn't work ..as a socity we are truely lacking not only in understanding but bare bones recorce!!
Thank you for sharing. I would love to have your lasagna or cupcakes. However you choose to do it, thank you for being strong enough and for caring enough to think of others after all you have been through. I've spent years in the darkness although it`s been years since I`ve been there. I know how easily it can happen. I know how little it will take to make it happen again. I barely keep my head above water but I do. And for that I am thankful. So - drop the cupcakes and run if you must. The cupcakes can and probably do mean the world to someone behind that door. It`s a win-win situation. Regards and well wishes.
On the brighter side, someone made me cupcakes, left them on the front door, rang the doorbell and ran away. My husband for twenty three years and the father of my five children developed stress related Psychotic Depression and Panic Disorder. After being admitted to the Psych Ward twenty two times in two years, and living through six suicide attempts, a major change in his meds led to full blown Mania. The Doctors encourage him to socialize with the others and he left us for a mentally ill married woman he met in the hospital.
Around that time my oldest son developed drug induced Schizophrenia and died six years later. The good news is I can deliver depression lasagna and have mercy for those who can't. Without my experience I may also be dropping cup cakes and running.
So, so true. The stigma surrounding mental illness is worse, many times, than the disease. Only once did someone bring me dinner when I was going through a depression. I had to hold back the tears...
Thank you for a well-articulated article. Let's hope we can be more supportive to each other. One in four experiences mental illness. No family escapes it.
This is what we are going through. But I have a son who will not try to get better, won't see a doctor, therapist or counselor, won't take med's and it's getting worse for him and for us. We can't put him out on his own and we can hardly live with him at times. I would like to join Ms. Wolf's facebook page but I'm afraid it will show up on MY page and my son will see it. I really need to connect with someone and there's nothing local.
I was 23 when I was diagnosed with major depression. Old enough I'd made it through my 4 year degree; young enough it wrecked my chances at a graduate degree. I was also old enough to hide it from my family for a year or more before it got so bad that I simply couldn't any longer. My spouse bore the worst of it, but my parents were certainly impacted too. Knowing how hard that was for them was what kept me from cutting myself in a "cry for help" action.
I have found a support network, mostly comprised of people who have also weathered depression. Unfortunately, this sample doesn't overlap with my employers or school advisors; it's extremely hard for people who have never experienced depression first hand to understand it. They just assume it is a character defect, or selfish, or I'm not even sure what. I'm pretty sure the stigma kept me from getting help early; I'm pretty sure the stigma still impacts me as much as the chronic lingering episodes of depression itself.
As a the son of a mother with severe bipolar disorder, I can attest that it works the other way round too. When she was ill, you just saw tumbleweeds rolling by in the front of the house.
That is so true! Anyone finds out you have cancer, any blood disorder etc. cards and phone calls, flowers.....seem to never end. With depression it is like you said a vulgar dirty word. Like it is a secret and no one wants to talk about it. They are afraid they might catch it if they do. I don't understand this. It is a lonely world with depression.
I had depression and spent a week at a mental hospital. After that, the people at church would avoid me like the plauge. It was the strangest thing, it was not just a few people, it was the majority. As if having depression was not bad enough, having the very people who are suppose to be your suport turn on you as if you were the devil, was like being kicked in the face.
It is sad because people who have not had depression can not understand what it is like and it seems most people judge others negatively as if it is a persons own fault they have it. I just am so thankful it is gone. It was a horrible experience.
I said this same thing on National TV this past February. Mental Illness is not a 'casserole illness'. Very true.
An acute and poignant observation. Well said.