“To have Bipolar Disorder or to be Bipolar”

The 1st night of my support group, that I had to drive over 60 miles to get to (that was the closest one), I was amazed by how many people that were there.  There had to be at least 20.  So the facilitator, who has become a good friend of mine (we’ll call her “R”), started off the group by having us go around the room and introduce ourselves, say what disorder we had, and how our week went.  (It was a weekly meeting.)  

She finally gets to me and I have heard many people say “I have bipolar, I have depression, I have schizophrenia…”, but it didn’t really register with me.  So, I begin by saying that I’m Susan and I’m Bipolar. My week…  Before I could finish, “R” has interrupted me (and to this day I am so very grateful for this) and says to me, “You HAVE Bipolar Disorder.  You are not your illness.  It is a part of you.  It is something you have.  It does not define you.”  I may be paraphrasing (it was quite a long time ago), but the main idea is the same.   I am not defined by my mental illness.  This has stuck with me for many years and is something I pass on to others whenever I hear someone say “I am Bipolar”.  NO, you have Bipolar Disorder.  “I’m depressed.” NO, you have depression.

By saying we are our mental illness, we let it define who we are.  At that point, the illness takes over and for me that just isn’t an option.  Our mental illness is just one of the many things that makes us who we are.  Whether we are proud of it or want to hide from it, it is a part of us.  Once we accept this, we can truly begin to explore all the possibilities it has to offer.  

Yes, you read that right…possibilities.  I look at my mental illness as an opportunity to educate people that we are just regular people and not to be feared simply because we are “mentally ill”.  Because we all know how the media loves to portray us.  It’s an opportunity to educate legislators (state and national) on what policies would actually work in the world of mental health care and suicide prevention.  It’s an opportunity to reach out  to people who have lost someone to suicide and give them a glimpse of what their loved one may have been feeling.  To help them in the grieving process.  It’s an opportunity to speak to someone who is newly diagnosed or maybe not even diagnosed yet and assure them they are not alone.  There are so many opportunities available to us.  We just have to reach for them and start achieving them.

Now, I know having a mental illness is not all sunshine and roses.  That’s not at all what I’m trying to say.  I’ve known those deep, dark days where it never seems like any light can penetrate it.  I’ve been to the abyss and almost not made it back.  There is a real danger to mental illness.  My point is that acceptance and perception can go a long way to improving those dark days.  By accepting what we have and realizing we are not our illness, being willing to be our own advocate and an advocate for others, our perception of the illness can begin to change.

I keep very busy with advocacy and suicide prevention work.  I still have my dark days, but I push on (as I know we all do).  The whole point of this is that “the being bipolar” tends to pigeonhole us into a label which can victimize us.  I don’t know about you, but I’m certainly no victim and others I know are not as well.  By saying “I have bipolar”, this allows us to take ownership of the illness.  To relegate it to just being a part of us and not the whole of us.

I’ll leave you with a couple quotes:

“I HAVE Bipolar Disorder.  I am NOT Bipolar.  I am NOT my illness.  My illness is PART of me.” – Anonymous

“I’m more than you know
I’m more than you see here
I’m more than you let me be
I’m more than you know
A body in a soul
You don’t see me but you will
I am not invisible
I am here”

-U2

 

Never Ending Saga of Community Mental Health

So, as you know I fancy myself a mental health advocate.  I’ve done it for years for a certain charity and now I’m on my own.  I’ve been helping a friend work her way through the horrors that are the Community Mental Health System.  I’m trying to give her strength and a voice.  I wrote in an earlier blog about getting my Congressman involved in this matter.  Well, now it’s really time to get him involved.

So, I finally get my friend, we’ll call her “B”, to make an appointment with the director of the center.  It’s set.  I have her write down everything that has happened to her since she walked in the doors.  It has been horrible treatment that I know is not isolated to my town.  So, she finally gets the courage to do this and we go for the appointment.  They try to tell us that it was scheduled for tomorrow. “B” has a voice recording of the director confirming our appointment for today.  He then expects us to wait 30 mins. while he finishes a conference call.  This was unacceptable.  I then told his little minion (oh, maybe that’s not a nice thing to say…oh well) that we had other engagements (true) and that the director had just lost his chance.  We were now going to the Congressman.

Maybe I shouldn’t have said that, but really aren’t they suppose to value their clients?  She has been treated like a number ever since she started going there.  The crisis center (still a part of this center) actually talked her out of going to the hospital when she was suicidal.  Who does that?  I’m fortunate that I don’t have to go to this center.  I think if I did, I would opt out of treatment.  Just because patients are on state assistance does not give anyone the right to treat them with any less dignity.  They still deserve high quality care.  I understand about state funding cuts to these centers, but those cuts shouldn’t effect whether or not you treat someone with common decency and kindness.  It’s horrible when you walk into a waiting room and the secretary staff is behind glass.  If they’re going to be behind glass, please make it sound proof.  Patients should not be able to hear the staff talking about them.  For one, the staff should not be talking about the patients anyway.

I’m just appalled by the utter lack of concern for patients.  Also, when a patient does finally decide to stand up and say something, they are verbally attacked by the staff.  It’s just wrong.  We all need to take a stand on the quality of care in community mental health clinics, not just in our own towns, but across the nation.  If the quality of care is not there, people will not seek help.  Now, I should qualify all of this…there very well may be some good community mental health clinics around.  If there are, then they should be used as a model for the rest.  The goal is to get people to treatment, treat them well, and help them on the journey to recovery.

Okay, my rant is over on this subject…for today.

Sitting on the Sidelines

I don’t know about you, but often (quite often) I feel like I’m on the outside looking in.  I have a husband of almost 20 years (wow!), a 16 year old son (oh lord help me he’s driving!) and a 14 year old daughter who I swear thinks she going on 40.  I try to engage with my family, but sometimes I find it difficult.  Sometimes I just feel like I’m standing in the middle of the room, invisible, as the rest of them whirl around me going about their business and there’s nothing I can do about it.  It’s a bit like an out of body experience.

I take my medication like I’m suppose to (well most of the time).  I do forget sometimes.  I see my therapist.  I go to acupuncture.  I do all the things I’m “suppose” to do and yet sometimes I feel like it just isn’t enough.  Luckily this isn’t an everyday occurrence, so in that respect it all must be working…at least a little.  When these moments of invisibility strike me, I try to tell myself that my family loves me.  They need me.  I have to say that over and over like a mantra.  It does seem to help.  I don’t like the feeling of just watching what’s going on around me.  I want to be an active participant in my life.

I wonder does this happen to any of you?  I’ve been (knowingly) dealing with Bipolar Disorder and Anxiety Disorder for over 10 years.  Have any of you that have dealt with it for a few years or more felt similarly?  I’d be curious to hear how you handle it.

The Answer For Youth

Well, today ended a two day garage sale.  I don’t like garage sales.  I enjoy meeting and talking with new people, but I don’t like having people look around my garage at my stuff.  I know, isn’t that the point of a garage sale?  Well, as nice as it is to hear stories from people, my anxiety levels just go through the roof because I start wondering are any of these people going to come back and rob me?  I know, completely illogical, but I think that’s the point of anxiety.  It defies all reason.

Anyway, my point in telling you about this mundane life event is, if you will recall, I had sworn off all charities after the fiasco with the American Foundation for Suicide Prevention.  I told myself that I was done volunteering my time, donating…  Well, apparently I do really like doing things for others.  I think it helps balances me out (sometimes).  There is this organization in my town (NOT a national organization) called T.A.F.Y (The Answer For Youth).  They help homeless and at-risk youth in our area.  I’ve donated several bags of hotel amenities for them in the past and then went on about my merry way with my volunteer work for the other organization.  So, today I decided to give them a call and see if they could use anything else besides clothes.  It turns out they help people find housing and help them get set up.  They were looking for household items like bedding, furniture,kitchen items, lamps, rugs, etc.  You know, the stuff that didn’t sell at the garage sale.  My hubby and I loaded up all that we had and brought it to them.  It turns out they had someone they were setting up in a home after the weekend and most of what we brought was on their wish list.

This volunteer was so incredibly appreciative of what we had brought.  I only wish we had more to give.  TAFY provides a hot meal 4 days a week and a “sack lunch” for the days they’re not open.  They provide counseling, housing help, job placement help.  I know there’s more, but I just don’t know it all yet.  They lost their state funding about 2 years ago and have been relying on donations to help pay for their rent ($1,000), food, and other expenses.  They serve about 85 youths per month.

They are very short on volunteers.  I’m debating about helping on certain days, but I just don’t know.  It may be too soon.  I know I can help out from an advocacy stand point to try get some state funding returned.  But do I want to invest my time, heart and soul like last time?  It didn’t end well with the American Foundation for Suicide Prevention (I still have had no response to my last email to their CEO, who does know me).  I’m just afraid to get involved again.  I’m afraid of being hurt again.  I like the idea of working with youth.  It’s what I do now for the schools.  It would be good to show these kids that there is someone else out there that cares and that they can trust.  Funny, my first thought today was that I could teach them about suicide prevention.  I’ve left the American Foundation for Suicide Prevention, but it hasn’t left me.

I’d be interested to know what you think.  Do I just donate items as I come across them or should I jump back in?  One is comfortable and still helping others and the other option is a bit scary.

I wanted to add their website http://theanswer4youth.org/ .  They also have a facebook page called The Answer for Youth.  Please check them out.

Mental Health Advocacy into Action!

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Mental Health Advocates are a powerful voice for change that is made up of thousands of individuals nationwide who take an active role in protecting America’s mental health through legislative advocacy. Because of our actions, we have won major victories such as the recently enacted Mental Health Parity Act. We speak out and make our voices heard on equal access to care, federal funding, treatment and prevention.  We are trying to get Mental Health and Suicide Prevention funded equal to or near the level of other illnesses, such as HIV/AIDS, Cancer, Diabetes, Heart Disease.  All of those illnesses started with very little funding (like mental health and suicide prevention) and all are now funded in the millions and billions annually.  They didn’t reach that level of funding overnight.  It took much advocacy work from people just like you and me, ordinary people with a connection to the cause.

Now, if tackling Washington DC seems a bit daunting to you, start local.  How are patients treated at your local community mental health center?  How are mental health patients treated in the ER?  For these issues, you would want to start talking with your local legislators.  Are there enough or any support groups in your town?  For this, check groups like with DBSA (Depression Bipolar Support Alliance) and see if you could receive training to start your own support group or if they would be able to help find someone to start it.  You can post informational flyers from different mental health organizations (DBSA, Mental Health America, local mental health facility).  All of these places and more will provide brochures and flyers for free and you can post them throughout your community to promote education.  

All of these are ways to put Mental Health Advocacy into Action.  It all just depends on your level of comfort.  When I started, I didn’t jump right in and start talking to congress.  I took baby steps and then realized there was no stopping me.  I’ve been to DC a few times on behalf of mental health and suicide prevention initiatives.  I have found that is where my passion is.  I found my voice and discovered that people will listen.  When making my appointments, I’m polite, but very persistent.  I do not take no for an answer.  I just recently had a phone meeting with the congressman from my district.  I found him to be very polite, interested in what I had to say, and concerned.  The meeting was quite long.  We discussed both national and state concerns.  He was very concerned about the community mental health center in our district (as am I) and he and I will be discussing that further.  My point in telling you this is once you find your comfort zone, just go with it and be an unstoppable (respectful) force.  These legislators are just now starting to make laws that truly effect us so it is more important now than ever before that they hear from us.  They need to know if what they are writing into their bills will work in the real world of mental health care.

So, my advice is to be a strong voice in the discussion, but always remain respectful.  As long as you are respectful of them, they will be respectful of you and more willing to listen.  Write down what you want to say to them.  It helps to keep your thoughts organized.  

Can DBT really help?

How many of us living with a mental illness live what appears (dare I say) “normal”, successful lives?  Many of us have not been in the habit of announcing to the world that we have a mental illness.  We’re busy going to work, raising families, going to school, paying bills – all the while there is this underlying storm of emotional darkness that would quickly overwhelm almost anyone.  We continue with our day to day lives because what choice do we have?  We have a mental illness, okay fine.  There are still things that have to be done, so we do them.

 

“There’s a tremendous need to implode the myths of mental illness, to put a face on it, to show people that a diagnosis does not have to lead to a painful and oblique life,” said Elyn R. Saks, a professor at the University of Southern California School of Law who chronicles her own struggles with schizophrenia in “The Center Cannot Hold: My Journey Through Madness.” “We who struggle with these disorders can lead full, happy, productive lives, if we have the right resources.”

 

There is a great (my opinion) group therapy called Dialectical Behavioral Therapy (DBT).  It was created by Marcha Linehan, a Professor of Psychology at the University of Washington.  It has four modules of study:

1. Mindfulness – being present in the moment

2. Interpersonal Effectiveness – asking for what on needs

– saying no

– coping with interpersonal conflict

3.  Distress Tolerance – emphasizes learn to bear pain skillfully (ability to accept current situation (acceptance is not approval)

– crisis survival strategies

4. Emotional Regulation – identifying and labeling emotions

– identifying obstacles to changing emotions

– reducing vulnerability to “emotional mind”

– increasing positive emotional events

– increasing mindfulness to current emotions

– taking opposite action

– applying distress tolerance techniques

I found this mode of therapy to be quite helpful.  Like any therapy, a refresher every few years may be needed, just as a reminder.  It was about 10 years ago that I did this and it has helped me through some extremely stressful events.  I found as I was writing the “cliff note” version of DBT that I could use a little more.  My point being, forgetting some of the therapy is not failure.  It’s an opportunity to learn something you may have missed the first time around.  I think it’s definitely worth checking out.  If you do, I’d love to hear what you think of it.

 

As always, thank you for reading!

Shame on AFSP (American Foundation for Suicide Prevention)

I have been a volunteer, fundraiser, board member, advocate and speaker at many walks including the San Francisco Overnight for the American Foundation for Suicide Prevention since 2008. I have been team captain for my local chapter for many of these national walks. I found out this morning (not by National nor the Overnight Walk Committee) that I have been removed from being captain of this year’s team since I am no longer a board member. I have not been a board member for 2 months. What ever happened to common decency? Why is it that AFSP National could not see fit to give me a heads up about this or even ask me? Had I been asked, I may actually have been alright with it. I have fundraised THOUSANDS of dollars over the years for AFSP between the Overnight Walks and the various community walks.  I had still planned on fundraising this year after I had helped others on my team reach their goal. Being that this would have been my 7th walk, I felt it was more important to help those that were doing this for the first time reach their minimum…isn’t that was a captain is suppose to do…help other teammates?  Well, National you’ve done it again. You’ve thrown away another loyal volunteer and why? This last act of yours only validates my reasons for leaving the board in the first place. You don’t treat your employees fairly and you certainly don’t treat your volunteers like they matter. I am done fundraising for you, done promoting you, just done. It’s bad when I’m fighting for my life with round 2 of ECT treatments and now I have to receive this kind of treatment from an organization that is suppose to be compassionate. It really saddens me to have to write all of this, I use to have such faith in your organization.
I have advocated to my congressional leaders for the bills they felt were important. I have spoken to numerous school districts about bringing suicide prevention education into the classroom.  I have sat through many trainings so that I could bring suicide prevention alertness training to my community to the first responders, to teachers, to anyone that I could.  I have clocked many hours and over 100,000 miles on my car going to various health fairs, numerous community walks across the state, the state capitol, a local military base, etc.    I did all of this because I believed in the cause and in the organization that was putting it in the forefront.
I am ashamed that I allowed myself to be taken in by this organization.  They are no better than some big businesses.  They do not value the employees they have that bring in new ideas, news ways to make things better and, apparently, they don’t value their longterm, loyal volunteers either.
From what I’ve learned from this experience, I will no longer be supporting this or any other charity.

Set Backs

How do you handle the set backs that inevitably come our way?  Sometimes I see them coming and can prepare, but most times I’m blindsided by them.  Today was one of those days.  I have volunteered for a certain organization for many, many years.  It was a huge part of my life.  I found comfort, satisfaction, and joy working within it.  I also made friends that I know I will have for the rest of my life.  As with any national organization, it has it’s faults, but you don’t want to see or hear about them.  The longer I volunteered and the more involved in the organization I became, the more disillusioned I became.  Yet I continued to volunteer because I believed in the cause.  Today I was given some very bad news from a local board member (this person is NOT the bad guy, just the messenger.)  My issue is that the news didn’t come from National itself, after all they do know me quite well.  Now I am being purposely vague on who the organization is at this time because they have not had a chance to reply to my email yet.  Once they have, well then it may all be different story (and I have that blog already written and ready to go).  I’m trying to take the higher ground.

My point in telling you this rather vague tale is that because I have been so invested into this organization, this little event has caused a set back for me.  It has sent me into a depression and set off my anxiety.  What I’m doing now is fighting with myself…fighting against the anxiety and depression.  I don’t want to give this suicide prevention group (yes you heard that right) that much power over me.  So, I do battle.  I know it’s not worth it to let this event cause a set back.  My question is this:  For those of us that live with Bipolar Disorder, do we really have control over these set backs?  Are they just bound to happened or can we do something fight them off?  I would love to hear what you think about this.

Escaping

Sometimes I feel like I just need to escape.  These days that escape is a girls’ weekend, a date night with my hubby, a few glasses of wine and a movie…  It use to mean totally checking out with the possibility of it being permanently , but, so far, that doesn’t seem to be the case.  That’s a good thing.  Earlier tonight, I went out with my hubby to a bar, but the first bar we went to was too loud and too crowded.  This was just too much for my bipolar tendencies to handle, so went to another.  We found one that was just right, not too crowed or too loud.  The barman was hysterical and laughing was exactly what I needed. I know I’m not suppose to mix my meds with alcohol, but once in awhile I just need to let loose.  It felt good.  I didn’t go overboard.  A little escape now and then is okay.  There is nothing wrong with it.  In fact, I think all doctors should prescribe it (although I doubt they’d be all for the drinking).  Just the mere act of getting away with friends or even by yourself is so good for you.  It can help you clear your mind and appreciate all that you have in your life.  So that is my bit of advice to you (not advocating drinking), that you take some time for yourself.  Self-care is so important.  So take the time to go out to lunch or dinner, have a massage or acupuncture, whatever it is that will make you feel relaxed and have a sense of peace.  An escape now an then is alright.