Does anyone have a child suffering from a serious mental illness?

Parent Cafe
1

I have severe bipolar disorder. For the most part, I defy all of the stereotypes. I’m very conscientious and self-aware; I hide my emotions well and I don’t allow myself to spiral out of control or make dangerous decisions. My friends and extended family have no idea and have never suspected a thing.

That being said…it’s still something that affects me tremendously. My medication helps, but I’m still seriously struggling. I graduated from my university four years ago and have barely moved forward. I let people think that it’s because of the economy, but the real problem is that the profound changes to my energy levels and cognitive function have not been condusive to consistent employment. I know that I’ll be able to do it someday, I know that I can do more with my life, I’m smart enough…I just haven’t been able to stabilize yet. Right now, I seem to do well with jobs that allow me to work from home (or have very flexible hours) and involve structured projects that I can work on at my own pace. I still haven’t figured out the best way to do that and still earn a consistent income (bookkeeping? virtual assistant? web design? freelance advertising for small businesses?). I’ve been thinking about it and hope to have an answer soon.

I’m asking the parents on here because I don’t think I can continue to work through this on my own and my own parents have no idea how to help me. They want to help. They’ve asked what they can do, but I don’t know what to tell them. So I’m wondering…what have you done for your kids? How have you been able to help them through it? What can my parents do? More importantly, what can I do to make the burden easier on them? I really have no idea what the ideal support system should involve.

2

I would suggest you find a professional counselor who specializes in whatever serious mental illness you have.

3

I recommend finding a psychiatrist who specializes in mental illness in adolescents and young adults . My niece has bipolar disorder and was struggling with medications and side effects until she found a psychiatrist who was commited to counseling as well as finding meds that did not give her bad side effects . That helped her get back on track .

4

Not a parent, but someone who went through a similar situation.

Firstly I would start with finding a psychologist who can work with you, and ask if they’d also be willing to do family sessions with you. It would help with being able to open up and get the support you need both in general and from your parents.

Keeping an open line of communication with your parents would be a good idea, being open and honest with whats going on. Emotional support is something that I always needed more of. I wouldn’t concern yourself with being a burden to them, you need to get healthy before you worry about that.

5

My 23-year-old son has schizoaffective disorder, which means he has symptoms of schizophrenia and bipolar disorder (mania).

I STRONGLY urge you to contact your state chapter of NAMI, the National Alliance on Mental Illness. They have many excellent programs, including support groups and free classes to educate consumers (ill people) and their families. I can’t emphasize enough how helpful NAMI has been to my entire family. My youngest child, 18, and I have started speaking for NAMI around the state, telling my son’s story.

Your state chapter of NAMI should have a help line you can call so they can help you AND your parents. If you want to send me a PM about your specific location, I will try to help you more. I really do care. My middle child was diagnosed with bipolar disorder when he was 16. He is doing much better, but I know how hard it was for him for several years.

6

First, get professional help and, as MaineLonghorn suggests, check out NAMI.

About your parents: Do you trust them to be there for you? To support, understand and help you in a compassionate, nonjudgmental way? If so, I would urge you to reach out to them. Tell them basically what you told us here. Be prepared for questions, shock, tears and hugs. It sounds like they love you and want to know what they can do for you. If so, you’re lucky.

As the parent of a son who hid his issues, I can tell you that knowing and learning to understand your issues may ultimately bring them tremendous relief – they may suddenly understand all kinds of things that have probably worried them to death. They’re also likely to deeply appreciate your honesty, trust, and the strength you’ve exhibited all this time.

Wishing you the very best.

7

Thanks for the advice. I’m currently seeing a psychiatrist and a counselor. I’m on medication and have talk therapy at least a couple times a month. Things just aren’t progressing as quickly or as smoothly as I’d like.

I wasn’t aware of NAMI but I’m glad it was mentioned. Having the extra resources to turn to would be very helpful. My psychiatrist and counselor have filled their most basic roles, but neither of them have ever directed me towards any outside resources, or given me any sort of instructions on how to manage the disease. I don’t think I’ve ever actually learned coping skills or how to manage my moods; the focus has always been on medication and talking through the things that upset me during depressive episodes. Classes or other educational materials might be just what I need to move forward. Now that I know that they exist, I’ll certainly look into it.

As for my parents, they do know about the bipolar diagnosis, but they have no idea what they can do to help. This is completely new to them and I think they’re struggling to understand their role. It sounds like they might benefit from some outside education as well.

MaineLonghorn, I truly appreciate your help. I’ll send you a PM when I have more time in the morning (it’s midnight here).

8

Sounds like you might also benefit from some career or job counseling or coaching to help you figure out what you want to do now that you have a degree and how to accomplish your goals while balancing issues associated with a chronic mental illness. Most states have career centers or you might even still be able to access career services at the college where you graduated.

9

Have you looked into your state’s voc rehab services? http://www.nolo.com/legal-encyclopedia/vocational-rehabilitation-individuals-with-disabilities.html. Or support groups? http://www.dbsalliance.org/site/PageServer?pagename=peer_support_group_locator

10

One of my closest friends is bipolar. You are fortunate to have gotten, and believed, a correct diagnosis at an early age.

My friend is unusually self aware and open with those of us she trusts. She has asked us (her husband, adult children, her father, a few close friends, her therapist) to help her be aware of small changes that signal a need for a tweek in her medications. We are her early warning system.

For her, those small changes are subtle, like becoming even slightly overly focused on her hair, her skin, her clothing choices. She is always fabulously put together on the surface, but if she starts trying to show me “This little strand of hair that isn’t quite the correct length”, and I can’t see that her hair looks odd, it is a sign. That isn’t a statement about anyone else in the world except her. (in other words, I wouldn’t think anything about it if any other friend started talking about a bad hair cut. For her, it is a sign that her meds might need a tweek.)

It is important, at least for her, to be willing to open up to a few people to be her canaries in the coal mine. I have learned that it is very important to know that meds need to be adjusted once in awhile, for the rest of her life, and that her relationship with a therapist and psychiatrist are forever. She may have long periods of time when she doesn’t need to see either one, and then an occasional period when she needs to see them frequently.

Professionally, she is able to perform at a very high level, in ways she would not have believed possible during the many years when she was misdiagnosed, or not able to believe and embrace her diagnosis.

11

Like the above poster, i have a good friend that has OCD. I can tell if she needs meds adjustment if she is talking more about who cut her off in traffic and the like. Open up to some friends…and get the support from a place like NAMI.

12

That might be one way for my parents to help. They can be the “early warning system” that eastcoascrazy mentioned. I can give them a list of both subtle and obvious signs to look out for. They might be able to recognize that I’m slipping into an episode before I do, and with their input, I could probably make modifications before the episode becomes a problem.

I’ll also consider telling a few more people. Right now, my parents are the only two people who know. I don’t want to tell too many people, but I think I could let my aunt, cousin, and older sister into the circle.

13

NAMI has a peer to peer class that you might check out. I bet you would be a great resource and in turn also learn from others who have gone through similar situations.

Your parents might want to take NAMI’s family to family class where they can learn how best to support you.

You have our support here too. Thank you for reaching out.

14

Nami’s family to family class would be excellent for your parents. Unfortunately there probably isn’t a lot they can do other than be supportive and be present to step in to keep you from doin any serious harm if you begin to get badly depressed or manic. If you know what your warning signs for either of these are and you are trusting enough of your parents, the best way they can probably help you is to be willing to step in and take control when necessary. E.g. If you are a wild spender when manic, have an agreement that they will take your credit cards when they see signs x, y, and z.

As both the spouse and the parent of people with serious mental illness, I can assure you that your parents do not want you to worry about lessening the burden on them. They would gladly shoulder any burden if it would make you well. Unfortunately getting mental illness into remission (because that is really what we are talking about, not recovery or cure) can be a slow, frustrating, trial and error process. If you have tried several medications or medication combinations without success, I always encourage people to seek out a psychiatrist who specializes in psychopharmacology. You may have to go to an academic medical center to find someone like this, but the difference is amazing as they really can break down the specific elements of your symptoms and select medication based on that in a way I have never seen another dr do. Also keep in mind that the best medicine for you may be a “cocktail” of several different meds. There is nothing wrong with that. Whatever keeps you feeling well and functioning at your best is appropriate. I know several people in high-level positions who take long lists of psychotropic medications.

Secondly, you need to find a counselor who will help you with some coping skills. Often people with mood disorders have not been able to learn ordinary coping skills because you have just been trying to survive. Medication will get you to the point where you are able to exercise coping skills, but you are going to be behind your peers in terms of learning them, but a good therapist will get you there. The younger you are when you start this the better (having observed a teenager and a 40 year old both going through the process at roughly the same time).

I wish you all the best. You have taken the most important first steps by recognizing your illness and seeking help.

15

@mountainskies You might want to see if there is a skilled DBT therapist in the area you live. Google DBT or Marsha Linehan or the Linehan Institute. DBT offers evidence-based skills training for all types of people struggling with disorders of emotional regulation (no matter the root cause or exact nature).

In the hands of a skilled DBT practitioner, you will learn the concrete skills you seek and as they say in DBT circles, you’ll “Build a Life Worth Living”.

We were fortunate to stumble upon an amazing, effective DBT therapist. The therapist gave us the name of a psychiatrist, who has been managing the meds. The two practitioners work well together.

As parents, our kid needed our help knocking on doors and not stopping until we had assembled the right team. And, we help by paying for it, & prioritizing it. Neither practitioner takes insurance. Our kid getting the help she needs, and getting stable/well is the most important thing.

Good luck and good health to you!

16

Great suggestions. I’ll look into DBT and see if there’s anyone trained in the area. I’ll also check the teaching hospital to see if there are any psychopharmacology resources.

17

I am sending you a private message.

18

The term “bipolar disorder” covers a lot of ground. Do you know if your diagnosis is bipolar 1 or 2 for instance? I am unclear on how recent your diagnosis is. You finished college 4 years ago. Was your diagnosis after college?

We have been told that 95% of people with bipolar disorder also have ADHD, but of course, at least for bp1, ADHD medication is a problem. Is that part of the picture for you as well?

If you already have a psychiatrist, and feel your meds are working, then you probably need some practical advice from a counselor. If your current counselor is not doing that, and is focusing on emotions and mood, then you can either ask for more practical conversations, or seek that kind of help elsewhere. A life coach might be an idea. Vocational counseling.

In our experience, just trying things out and making mistakes along the way is the best way to progress. Call it “wise wandering.” It is difficult for all young people, but of course very hard for you and others dealing with a health issue.

I understand your desire to work at home and at a schedule you have some control over. But getting out of the house and being with people can ultimately be helpful, however hard in the beginning. You might start by volunteering for a very limited amount of time in an area that interests you.

What was your degree in, meaning, what was your major? Before your diagnosis, did you do any interning or volunteering?

Start off with something easy, like volunteering in a local hospital, or an animal shelter. Just to get out in the world. You can slowly get used to having commitments that are not entirely under your control.

Are there skills you feel would be helpful to obtain? For instance, community colleges offer certificates in bookkeeping (which you mentioned), office skills, vet tech, health fields and many other areas.

Real estate is expensive to get into but can often be done at one’s own pace (but can be stressful).

It takes some years to adjust to a diagnosis of bipolar disorder, get the right med mix (are you tired and lacking energy, are you sleeping, are you impulsive- all can be from meds or be addressed by tweeks). It also takes years to gain skills of living with this health condition. Sleep is very important, at regular hours, often a challenge for young people. Try to keep the same schedule every day. Circadian rhythms are important to maintain.

You are moving forward. The fact that you posted here and are looking for more in your life is huge. Perhaps your parents or counselor can advise, but my main advice is to keep life steady and then slowly add things like volunteering an hour or two a week outside the house, and/or take some classes.

One other thing: yoga or tai chi can be enormously helpful, and has the added benefit of getting you out of the house among people in an undemanding way. I strongly recommend you find a class or two. The effect on mood steadiness can be unexpectedly strong.

19

Others have given you good advice, so I’ll just add a few more things. This is what I’ve told my daughter, who has anxiety disorder and is entering her senior year in college. She is also struggling to figure out a career path because of her limited capacity for work and her need for a lot of contemplative time.

Make a list of the things you do that have consistently brought you joy. List the skills you are using when you do those things. For example, my daughter loves, and is very good at, public speaking.

List the things that are deal-breakers for you. For example, working more than 8 hours a day.

List the skills you’d like to acquire, but do not yet have.

Make these lists when you are stable, not during a crisis or period of high stress.

Take them with you to a career counselor. You may have to try several until you find one who understands mental illness.

20

The suggested comorbidity of bipolar disorder and ADHD seems severely overestimated. Many symptoms may overlap, but the comorbidity is not that high. In fact this study says , in pediatric bipolar is order, the morbidity is about equal to chance http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3201827/