Parent of Three Kids Diagnosed with Mental Illness - ASK ME ANYTHING!

My grandmother was a paranoid schzophrenic. She had to be institutionalized multiple times. Unfortunately one of my nieces is now diagnosed with schizophrenia. I have another two relatives that have been hospitalized for anxiety/depression that got out of control with alcoholism. Throw in a little eating disorder behavior and you get the idea. So I have more experience than I would like to have with mental health issues. Most “experts” do believe that there is a hereditary component to mental illness…but you can’t open up the brain and go “ah-ha” there it is. Still you do see it running in families or at least the “potential”. It is complex. Luckily it just seems to hit around me…not on me. There are mentally healthy people in my family too.

One caution: I know that people want to help fix mental illness with exercise and diet. I’m a big proponent of exercise to lift mood (but not fix a brain illness). A big caution to any one struggling with mental illness, please talk with a doctor if you change your diet or begin an exercise routine. Eating Disorders/Compulsive Exercise can be VERY attractive to certain personalities struggling with anxiety, depression etc. So you go from one issue to two. Restrictive eating (and the promise that a diet will solve all your problems) can be a very slippery slope.

Be cautious about recommending things that make you feel better IF you don’t have a diagnosis. A person with a mental illness simply does not have YOUR brain. They have a different brain that must be respected and listened to…if there is hope for a better life.

@kidzncatz that’s one of the most common questions I get, and it’s tough. I called our state crisis line for a friend in a similar situation with her son, and they suggested she call Adult Protective Services. APS said they couldn’t do much at that point but told her how to file a report if necessary. My friend felt better knowing what to do if the situation deteriorated further. Her son’s girlfriend actually called 911, she was so worried about him, but since he wasn’t a threat to himself or others, the police couldn’t do anything. I agree that therapy for you is probably the best option - it has helped me a lot.

@bridgenail, that’s good advice. I’ve learned that ANYTHING I suggest to my son has the potential of becoming an obsession with him. Even Bible reading! I also agree that it’s probably best not to recommend things to an ill person or his/her family member. SO many well-meaning people have sent me suggestions. It’s tough, because I feel like I have to follow through on them even when I’m 99% sure they’re not legitimate. At least my son’s doctor doesn’t mind giving me his opinion.

MLH has been so helpful to me in the past, I’m so grateful that you are doing this now. Thank you! My mission lately has been to encourage people I know to think of schizophrenia and other brain diseases in the same way as any other chronic medical condition since your brain is as much a part of your body as your heart, lungs, arteries, pancreas etc… It’s not a secret, or shame or stigma at my house and with people I know. Like any serious health condition it is burdensome and I would rather not have it in our lives, if I had a choice. To clarify; the disease is a burden not the person, she is a delight and a joy; it breaks my heart that this happened to her.

Like a few of you, my oldest D with schizophrenia paces too. A LOT! and has since middle school when we thought it was a new ADHD symptom.

CollegeMamb0, the things that you said make. so. much. sense. When she “exercises”, it’s one more “thing” she has to do and causes her extra anxiety. It has also become an obsession in the past, so she’s got anxiety around that. Movement has been key to keeping her grounded. So, pacing and riding an exercise bike work well just to “get the crazies out” (her words, not mine), we absolutely do not call it exercise though, down that road lies trouble. Honestly, it can be annoying and she’s wearing a path in the carpet upstairs, but she does try to pace in the basement sometimes or outside in the yard and I would never try to stop her since that would be like trying to stop the wind and she truly needs to do it. She would like to go on easy hikes as we live in a beautiful area and she also enjoys swimming but… She also has something called PNES and will suddenly lose the ability to use her legs and sometimes arms, so she falls down. Because the meds she takes have made her gain about 80 pounds, we can’t easily help her back up, so hiking and swimming are kind of dangerous right now. She’s hoping to be able to do those things again someday.

Luckily she’s very treatment compliant and is actually doing better than I would have expected during this pandemic. She’s done a partial hospitalization via Zoom and has her social group of DnD nerds, as well as trying to get a small business off the ground that involves special dice for DnD. She says it’s kind of like the world slowed down a bit and she’s able to catch her breath. All of this goes to show how important social connections are to her, I understand that those connections can be extra important to people with a mental illness.

My youngest D has GAD, MDD, OCD and possibly tourettes. All of which are mostly under control, except now. This isolation has been very hard on her. She graduated from high school this year, with all the mish-e-gosh that entailed for the class of 2020, and is taking a gap year before starting college next year. She got accepted ED to her top choice and was intending to take a gap year before Covid happened so she could get a job and work, then all heck broke loose and she has been at sea ever since. No job, no school, no structure, most of her friends, who she hasn’t really seen much of anyway are still starting college this year. She is doing her art and trying to keep it together as best she can but it’s been hard, she’ll be OK… I think. MLH, your cautionary tale about your youngest seeming to be OK reminded me to be more vigilant with her.

I don’t know if any of my family members had anything like schizophrenia or bi-polar, if they did, it was hidden and not discussed. My mother had depression/anxiety and I probably do as well so there’s that genetic connection. My husband is adopted so we don’t know what his genetic background is. It wouldn’t surprise me to learn that he has Bi-polar II however. Still no schizophrenia though. I didn’t know there were actual risk factors, my D was born in late fall, had slight trauma at birth, and we had a cat, but no taxo as far as I know, I remember both of us being tested for it. So I learned something today, whadda ya know.

And this is how I think a lot of us cope with the stress, we find a community of like-minded people that we can share things with, emotional stuff that you can and should also tell a therapist, but also the day to day coping with “the system”, humor, information, updates on kids and cyber hugs. I belong to a couple of online groups, but truly I have found the people here on CC to be the most helpful and encouraging. NAMI has been a tremendous resource. There are a few other groups out there as well but I don’t want to take a chance of violating CC’s TOS so I will just say that google is your friend.

@morkatmom thanks for the update. Yes, finding a community of family members has been so helpful. Nobody else can truly “get it.” We can say things to each other that we wouldn’t dare share with anyone else.

Any reliable statistics regarding what percentage of people in the US suffer from mental disorders requiring treatment at some point in their life ?

I recall a statistic that one in five requires treatment (or should get it) for depression at some point in life. I imagine the numbers for other conditions are much lower, except maybe for anxiety, which may have got lumped in with depression in that statistic. Sorry, no cite.

“Lost Connections” is a loosely researched book regarding mental illness and depression. One of the author’s proposals is that the rise in US depression and mental illness is connected to our lack of connections. She tells several stories about how changes in the community can impact the levels of mental illness in the community. The BlueZones Project (google it) has seen similar results.

In the “old days” people sat on their front porch, kids played outside and people routinely met to play cards, help one another and socialize. While this still occurs in some neighborhoods, it happens significantly less than it used to. Conversing online, via email and via text just isn’t the same.

@MaineLonghorn I have long enjoyed reading your responses on other threads and thank you for this one! I love these types of thread on CC - the ones where I can learn so much.

When being tested for ADHD in 8th grade, the therapist said my child had some low level anxiety. We were not advised to do anything - it was like a passing comment. At 20 he was diagnosed with depression and anxiety. He said he had been depressed for almost 2 years, but never said a word to us (partly because he didn’t want to talk with us about it and us always talk about it, look at him differently, worry, fuss, etc). He went to school locally, so he lived with us and we had no idea.

I feel like our kids knew we were always available to talk about any topic/the lines of communication were always open, etc, but do you have any advice for parents on how they can recognize when a child is struggling, what they can look for, or how to be proactive (but not pushy) in gauging how their child is doing mentally?

Many thanks!

@RookieCollegeMom: Does your son exercise daily ? Healthy diet ? These are important considerations for one suffering from mild depression. Over the past few decades, I have known some whose depression was made worse by anti-depressant medications–which can lead to suicidal thoughts.

Of course, one should seek medical care from a qualified physician, but it has been well documented that those taking anti-depressants need to be carefully monitored.

Exercise & diet can have a significant effect on one’s emotional state of mind.

I have no medical training whatsoever so my comments should not be taken as anything other than as casual conversation.

My family history (and some of my kids) suffer from apparently hereditary, brain-based psychiatric disorders. I would distinguish genetic, life-long brain-based disorders (schizophrenia, bipolar disorders are examples) from situational anxiety and/or depression, or mental health issues like anxiety or depression that arise during times of stress but later dissipate.

Many young people suffer the latter during adolescence, the transition to college, and the transition to adult life in general- and improve or get better. But the brain-based disorders tend to be life-long.

To get more specific about bipolar disorder, there are several types:
https://www.webmd.com/bipolar-disorder/guide/bipolar-disorder-forms
My family members suffer(ed) from the most severe kind, bipolar 1, which includes mania and psychotic features. Lithium is a godsend. (I wish my father had had it; he committed suicide as a result of bipolar 1.)

I appreciate MLH’s story but since medication compliance is so essential, I get a little concerned about one aspect of her family story. Specifically the son with a bipolar diagnosis, who found a passion and was able to get off meds (as a result?). I do not think MLH wants anyone to think that going off meds is a good idea, if the diagnosis is correct.

If my kid went off meds (as she did for a few weeks this past spring, for the first time in 10 years, with the sanction of her MD, due to side effects) the results aren’t pretty. Immediate crisis. She had to go back on after two weeks. And finding a passion can be related to mania for her. She has to keep those passions tamped down.

One other comment: bipolar is related to migraines and epilepsy. One of my family members suffers from the latter two. Epilepsy is treated as a medical problem (though in the past sufferers ended up in mental institutions) while bipolar is treated as a psychiatric problem. I don’t see the difference, since both appear to be essentially physiological and genetic, and both can be exacerbated by stress.

ps Electro-convulsive therapy or ECT, colloquially known as shock treatment, is still being used but has been refined.

My aunt and several uncles were on lithium. It can be a godsend as @compmom said. As with any meds, the issue is compliance. People sometimes miss the feeling of mania - even if they know its part of their disease. My aunt was particularly difficult and prior to her hospitalization, had several severe breaks where police had to be called.

Thanks for doing this @MaineLonghorn . I’m interested in tips for how students can navigate this via online. When my son was in boarding school for HS, he had access to the campus therapists there and used them. Now that he’s starting college and it’s online, I don’t know if he sees the value in accessing the campus therapists, even though they still have a fully staffed office. Do you have advice for transitioning mental health care to the online format?

@RookieCollegeMom it can be really tough to gauge how my kids are doing. My oldest doesn’t decline gradually - he drops off the cliff. Often, it will be just a couple of days after he’s seen his doctor. One time in the ER, a social worker said to me, “Mom, you know you could bring him in sooner before he gets to this point…” ARGH! That was when he still lived with us and I watched him 24/7. I told her he had JUST seen his doctor and everything seemed fine the day before.

Having said that, I have learned with him, if I ever have the thought, “Huh, that’s a little odd…” that it’s a HUGE red flag. I usually call or text his doctor at that point. The doctor is very responsive and will sometimes tweak dosages if the behavior is concerning enough.

With my daughter, if I notice that she seems a little anxious or depressed, I will ask her if she would like an appointment with her counselor. She’s been so stable that I haven’t asked her that in a year, though.

My middle son, who I forgot to mention also has ADHD, is good about seeing the doctor when he is in the US.

@compmom, that’s why I mentioned that one possibility would be that my son was misdiagnosed. I should have added that he went off meds with the express permission of his psychiatrist, who monitored him closely. Of course, nobody should go off meds or change dosages without working with their doctor.

@CCEdit_Torrey it seems that in Maine, most counseling/psychiatrist appointments are online now. My son’s doctor still sees him in person, but he said that over 3/4 of his patients have virtual appointments. So the counselors and psychiatrists are getting used to the platform and would probably suggest it to anyone who called in. TBH, though, our doctor says he doesn’t like it much - it’s hard to really tell how a patient is doing via video.

Thanks for doing this @MaineLonghorn! My D suffers from anxiety and it’s been hard for me to help, specifically by helping her find a psychiatrist. She did work with a therapist a little at college and does have a variety of self-help methods (meditation-like) for helping the anxiety. It’s helpful to read of others experiences and that the feelings of not being sure how to help are not unique.

Hi! My parents aren’t very accepting of mental illnesses, and think that it’s easily fixable. I feel like I have anxiety and depression, but I don’t know how to bring it up with them, because I know they will find some way to dismiss what I say. Do you have any advice on how to bring it up in a conversation and tell them?

@ap7125 it seems that young people post more often than I would expect, about parents who do not accept the idea of mental illness. And sometimes parents feel ashamed, as if it is their fault.

Do you have access to a counselor through school, who could help you with communication or advise you? I realize that many schools offer short term help only and then refer out.

For longer term options, is your health insurance through school or through your parents? Do your parents receive documentation of any mental health visits you might go to? Your insurance company may have a list and the Psychology Today find a therapist site is a good resource.

If at all possible I think it helps to seek help first, and the therapist can then help you with your parents. At that point you could also suggest reading for your parents, but say the suggestion came from a professional.

A primary care doctor whom you trust might also be helpful.

So sorry you are feeling this way and hope you can feel better, and that your parents come to an understanding that supports you.

@ap7125 I’m so glad you reached out and I encourage you to take @compmom’s advice. Several social workers have told me that supportive parents are the exception, rather than the rule, when it comes to their children’s mental illness. It just blows me away that society is still so backward. But school counselors are VERY interested in helping students, so please reach out to yours. You could also contact your state chapter of NAMI and see if they have any suggestions (Google “[state name] NAMI” and look for their helpline number.

Please keep us posted. I see that you’re a new user so I will send you a PM in order that you can write me (you need 15 posts before you can send PMs).

Lots of hugs!

@liska21, thanks for sharing. Have you contacted your state’s chapter of NAMI to see if they can help you find a doctor? Would your daughter be willing to see one?

I am taking the family nami class. The teacher is wonderful and insightful. This class is free to me. Just wondering does the Nami teacher get paid? Am i supposed to give her a gift? Or just donate money to nami? None of this was suggested to me but i wonder what ist the etiquette?

This article stresses why now more than ever it is so important to address this issue and help our students navigate these anxious times. Thanks again, @MaineLonghorn, for hosting this AMA and thank you to all who have contributed!

https://calmatters.org/education/higher-education/college-beat-higher-education/2020/08/pandemic-college-mental-health/