What Does it Feel Like to Live With Bipolar Illness?

Writing Heals

Writing Heals

I’ve started this Q&A about bipolar disorder as a way to engage those with bipolar illness and their families in telling their stories.  Perhaps by reading others stories, you won’t feel so alone. And writing about your personal exoeriences helps other and it can help you because writing heals.  Please join our conversation.

To get you started–A question for those who have bipolar illness, one for families, and one for spouses and significant others.  Feel free to go wherever your writing takes you:

Q: What does it feel like to have bipolar disorder?  Have you found any strategies that make life easier?

Q: What is it like to have a family member with bipolar disorder?  Have you found strategies to cope?

 Q: What is it like to have a spouse or partner with bipolar disorder? What difficulties have you had in maintaining the relationship ?

Here’s my story as a mom:

Difficult but Heartfelt

Difficult but Heartfelt

“My son was 20 and beginning his junior year in college when he had his first episode. After that Max had an episode every year. He disappeared among the big city homeless, ended up handcuffed in the back of police cruisers, and came within inches of jumping from a shattered eighth floor window in Philadelphia.  By the time he was twenty-six, he’d earned a dozen commitments to psychiatric institutions.

For me the homeless pushing grocery carts filled with their meager belongings became encounters too close to home.  I struggled to come to terms with my changing role as parent and confidant.  Stymied, bullied, blindsided by doctors, hospitals, and the law, I chased Max’s collapsing dreams and I was afraid he wouldn’t live through the next crisis.

I’ve spent hundreds of hours in psychotic hospitals.  Over the years I’ve learned how horribly inadequate our mental health care “system” is. Finding good treatment for Max was more than just difficult—it was often impossible. Patients and families are dictated to, appointments with doctors are hard to come by, those in crisis end up in emergency rooms where they wait for help that never comes, outpatient care is practically non-existent, and too many psych units are simply holding tanks, places where little treatment occurs except for the piling on of medication. Already severely traumatized from his illness, Max has been restrained, isolated, and physically abused by staff that are undertrained or just don’t care. Needless to say, it broke my heart.

After one lengthy hospitalization, l was told that Max would never recover. “Max can’t live on his own,” the doctor said. “You better plan for the future. You’d better. You’d better. You’d better.”  The message—you’d better give up hope. I had to reject the hopelessness that doctor tried to hand me because the alternative was simply too devastating.  I was angrier than I’d ever been, angry at a mental health care system that had failed us so completely and at that doctor.

To cope I finally found NAMI (National Alliance on Mental Illness), where I got educated, found enormous support from other parents, and became an advocate for my son and others. Other coping mechanisms included yoga, meditation, and time with grandchildren.  In these sweet beings there is nothing, if not hope.

Most important, I’ve learned that people with mental illness can and do succeed. They live fulfilled lives, working in jobs, volunteering, and developing significant relationships. They engage in the process of recovery, knowing that recovery doesn’t mean cure. How do they do it? They believe in themselves. They persevere through hardship. They risk failure. They define their own life goals and design their unique paths based on their own limitations, needs, strengths, preferences, and backgrounds. They are supported by allies—family, friends, peers, who believe in their potential to be their best, who stand by them, offering hope, and support.

As part of coping and healing, Max and I eventually wrote a book together about our journey. Reliving the years of trauma was painful for both of us, but ultimately it helped us make sense of all the chaos.  And something about the writing makes the pain less intense.  It was a risky venture, especially for Max, who has brought his illness into the light for everyone to see.  But it has felt like the ultimate step in recovery for both of us.” —Kathy

Thank you to these two friends for  writing about their bipolar illnesses:

“When I was diagnosed with bipolar disorder around six years ago, I had long been aware that my brain was somehow oriented in a different direction than anyone else’s brain I knew of. Receiving a diagnosis only put a name on an experience I was already familiar with. Six years later, I have no distinct conclusions, no cures, no answers about bipolar disorder. I can only describe my book butterfliespersonal experience, and I do so in an attempt to better understand how to function despite my struggles. I often regret who I was and what I did while in manic states, or the time that got wasted during months of depression. I’m working on my relationship to my memories. I don’t know how to treat them, interact with them, or understand them. I think I need to accept the past as something that I experienced, and that’s it. But I want to turn and run away from my memories, I cringe at the thought of them. So instead, I try to focus on where I am now – A stable, healthy place that took a great deal of hard work to reach. Of course, this does not mean I no longer struggle. My medication helps me manage, but there are always weeks when it is impossible to get out of bed. I engage in a constant battle with anxiety, which I can only describe as being perpetually stuck in the moment between tripping over something and landing on the pavement. Severe anxiety feels like being frozen in this moment, forever trying to hold myself in the position that will hurt the least when I inevitably hit the ground. In my experience, bipolar disorder means knowing how and when to ask the people who love you for help. It means accepting the mistakes you made, the delusions you had, and the damage you caused. It requires a great deal of self-awareness, patience, and forgiveness. These are not things I’ve mastered yet, but as time goes on, I gain greater insight into how bipolar has controlled me, and what I need to do in order to regain that control. Mental illness is not charming, “quirky”, or temporary. It is a huge weight that I anticipate carrying for the rest of my life. The trick is not figuring out how to cast off this weight, but rather to acknowledge its presence, get a firm grip around it, and carry on.”–Anonymous

You Are Not Alone

You Are Not Alone

“It’s a struggle because everything a doctor can do for you feels like guesswork and the medication can be almost as bad as the disorder itself.  It’s pretty alienating sometimes and it can be really extremely hard to have any real objectivity about the world around you are always struggling internally.  I just finally have found a medication combination that actually does anything and even now its hard work all the time.  It also can be really revealing in terms of figuring out the nature of your interpersonal relationships.  Fair weather friends will more than likely leave and you end up left with the people who are really capable of understanding you and being supportive in a real and ongoing way.

I do a lot of breathing exercises because I have sort of co-morbid anxiety.  Really the most important thing is to push myself to do the things that feel impossible. Sometimes that’s just like going out with friends when it feels completely counter intuitive.  Honestly I genuinely believe in faking it until you make it.  As long as you acknowledge your feelings it’s important to try to keep a semblance of normality.  It’s also important to be honest with the people around you.  I see a psychiatrist and a therapist once a week.  I also have scheduled hours for sleep and for exercise because having a schedule makes a huge difference.” –Anonymous

I hope you will join us in sharing your story.  With every best wish for healing and recovery.


Comments

What Does it Feel Like to Live With Bipolar Illness? — 11 Comments

  1. Hi Kathy – I loved your book, you and Max…yes our mental health system is truly a disgraceful, sad mess…wishing you much luck…writing helps heal..Warmly, Kathy

  2. These stories, are so candid and raw. It takes such bravery and honestly to put this out there.
    Saddening yet I can’t help but be comforted in that ‘I’m not the only one’ kind of way.

    • Thanks Emma. Writing the book was very healing for both of us. I’m proud of my son for his willingness to share his journey. Kathy

  3. Hi Kathy, living with bipolar is a 30 hr a day job. My entire life is consumed by it and my moods. But, I’ve turned it positive rather than negative. I live a life despite having BPD. I’m currently working on my own memoir about slice of my life that was very traumatic within BPD. You’re welcome to browse my website and see how I’ve handled BPD and continued to live my life with perseverance and faith.

    • I hope your writing is going well. It can be really hard to relive all the difficult times, but Max and I found that writing about our journey helped us make some sense of the chaos. It was definitely healing. Good luck with telling your own story. Kathy

  4. Kathy- Just finished your book and relived many moments as the Mom of a 28 year old man who was diagnosed 3 years ago with bipolar disorder and schizoid affective disorder. Life with my son has been a roller coaster ride for as long as I remember and any time the phone rings late in the evening or early in the morning, I am sure it is the police or a local hospital calling to tell me he is in jail or worse, dead. Yet there are the bright spots when he appears motivated to be well and chooses life. What keeps me going is that I keep in my heart a picture of the smart and curious little boy I enjoyed so much. I know he is in there somewhere and I never give up in helping my son to reach inside himself to let that person emerge again and really feel laughter and hope as he did as a boy. Thanks for the courage and the hope you have given all of us by sharing your journey with Max.

    • Hi Mary,

      Thanks for commenting. Our experiences are certainly much the same, aren’t they–the dread of the ringing phone, remembering who our kids really are. I do want to tell you that Max is doing well after so many years of trauma though he knows he must be vigilant. Writing the book was very healing for both of us. It feels kind of like we’ve come out the other side. Max is doing a lot of speaking about bipolar illness and has become certified by NAMI for the In Our Own Voices presentations. He finds it extremely rewarding to be helping others. So do I.

      If you’re interested, you can see us interviewed on PBS on my website: http://www.kathybrandtauthor.com Perhaps it will reinforce the fact that recovery is possible.

      I wish you and your son the very best. Thinking of you.

      Kathy

  5. Kathy–I just finished your book. The book gave me hope for my son (24) that won’t admit he has anything wrong with him and that pot is the best thing to help him. He can’t hold down a job, can’t concentrate on any type of class to finish his degree, and every single time we just think he is almost “there” he goes out and smokes pot and goes into a huge manic delusional state for months. We have also been told he can’t work or go to school. The system is broke. I love in Colorado Springs CO, and the police are no help either. The big thing is to throw him out-get an eviction notice/retraining order so he will get tough love. This why we have people shooting up theaters. No one seems to listen or really care. I don’t think my son would do anything like what went on with the Batman movie, but at the same time, I don’t want to worry about someone ending up getting hurt or killed due to something that involved my son. It’s like pulling teeth to get someone to help you–our hands are tied by the laws or the cops he said he didn’t want help so there is nothing we can do–even if he had a gun to his head, if he says he doesn’t want help there is nothing we can do. My son is back in the hospital again (7th time since 2012)–this past time the cops were called and by the time we got there, they basically told us, it would be better if we took him to the Crisis Center–not them, we “coddle” him (even though he is at a shopping center yelling and cussing at people at 9AM) plus, it was way too much paperwork. We get to the Crisis center to find out that it would have been better if the cops had brought him and not us. If my son had not went outside while we were speaking to the intake person to yell and cuss at the air, and which ended up with the intake person seeing him do this, he would still be home with us trying to help him calm down. All you want is help, but the treatment/laws etc are nothing but insanity. Your book was awesome! Thank you so MUCH for giving me hope and I feel so much better about “coddling” my son.
    Sharon-

    • Hi Sharon,

      I’m so glad you found hope in our book. It was a long haul for us, but I did feel I needed to stand by Max every step of the way and to support and listen to him. By the way, every time Max ended up in a crisis center or the hospital, it was because the police took him and I am grateful that they did. We were never able to get him hospitalized ourselves.

      Have you found the Colorado Spring NAMI (National Alliance on Mental Illness)? I think it’s so important to get connected to the organization. The Colorado Springs chapter is very active and effective and has so much to offer. I’ve been involved in the organization for over 10 years and am on the board. You will find a lot of support and so many resources there. I always advise family members to take the NAMI Family-to-Family class. It’s been a life saver for so many. The phone is 719-473-8477.

      Kathy

Leave a Reply

Your email address will not be published. Required fields are marked *