Voices of Mental Illness: Joe and Jess Speak Out

Every Wednesday on Bipolar For Life we have a special feature: Breaking the Silence of Stigma.  It’s an interview and/or personal essay format guest appearance from one of our brothers or sisters who suffer with a mental illness.  In addition to talking about the mental illness itself, we talk about how the stigma of having a mental illness affects our lives.

Today’s guest appearance turned out to be so different, and so compelling, that I decided to change the whole thing.

I first met Joe through his powerful piece on his blog ManicMedic about the recent rash of public figures openly mouthing discriminatory epithets against people with mental illness.  I recommend you go and read it right now, if you haven’t already.

We got to chatting a bit through the comments, as the topic was at the top of my consciousness just then:  two of our fellow bloggers and I have been slowly but surely building a social media (and soon to have its own blog!) platform called Faces of Mental Illness, which is meant specifically to counter the horrible images that public figures, news anchors, and random others have been spewing all over the media.  Don’t worry, a post will follow which will clarify all the mysterious things I have just said.

At any rate, I asked Joe if he would be interested in doing a Breaking the Silence interview with me, and he said he’d be delighted; and by the way his girlfriend has a few DSM diagnoses herself, and would I be interested in interviewing her too?  Of course!  Says I, all unknowing that I was about to enter a world of passionate intensity that I haven’t felt since I started taking Seroquel.

They sent their interviews right away, and I sat there reading them with flies flying in and out of my open mouth.  Here are two people, each with their own brands of internal pain, doing it all together.  They support each other, they actively participate in each other’s lives, and they are clearly well-developed individuals who think and feel for themselves.

Having a mental illness is hard enough; having a relationship with a person who has a mental illness is hard enough; combining the two, and managing to not only stay right-side-up but to thrive, is a labor of love.

So without further ado, please allow me to introduce first Joe, because I met him first, and then Jess.  It’s a bit of a long read, but worth every word.

Joe

BSS: How long have you known that you are living with a mental illness?

Joe: Ever since I can remember as a child something was not right, especially during high school I would get so depressed. I would let my feelings out in my writings for English class. I would also get “inspired” a lot as I liked to call it and got involved in as much as possible at school.

BSS: Can you share with us your diagnosis/diagnoses?

Joe: I am currently “officially” diagnosed with Bipolar Disorder II, I also show signs of anxiety disorder, especially in social situations.

BSS: When were you diagnosed with these?

Joe: I was diagnosed as depressed during college, it wasn’t until much later.. around 2009 if I remember correct that I was diagnosed with Bipolar Disorder.

BSS: How were they diagnosed?  Did you have any special testing?

Joe: It actually took a couple of hospitalizations to receive the bipolar diagnosis, no special testing… just observation of symptoms that I’ve reported and staff had seen on the unit during my hospitalizations.

BSS: Was your illness diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

Joe: No, as I mainly got depressed at the time of my initial diagnosis I was just simply diagnosed as “Depressed”. It wasn’t until after my second hospitalization in a month that I received the Bipolar diagnosis

BSS: Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

Joe: If I remember correct I was hospitalized 7 times in 6 months, I wasn’t out of the hospital more than a month during that time. It helped me get to the diagnosis and treatment that is “somewhat” working now. I don’t think it will ever be 100% perfect.

BSS: Are you on medications for your illness?  Do they help?  What about side effects?

Joe: I am currently taking Abilify 15mg daily as well as Serquel XR 50mg as needed for sleep. With the Abilify I am currently experiencing muscle spasms, mainly at night when I’m in bed. I’m told they will most likely be perminate. As far as the Serquel, it takes me a little longer to get going in the morning when I take it the night before but other than that no issues.

BSS: Have you ever had ECT (Electroconvulsive therapy)?

Joe: No, I have not had ECT

BSS: What other things do you do to help with your illness?  Do you go to individual therapy?  Group? Other things?  What, if anything, seems to help?

Joe: I go to individual therapy once every two weeks as permitted by scheduling. I had been going to a peer support group but have lost track of them. Both somewhat helps.

BSS: How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse….._)

Joe: I have had to keep it from my jobs, I worked in the Emergency Medical Services field where we on a regular basis treated patients experiencing psychological emergencies. You would never believe how they are spoken about sometimes after they are dropped off at the hospital. I didn’t want people to think of me like that.

BSS: Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

Joe: I have recently lost my job, in my first job interview back searching I had mentioned my mental illness along with one of my weaknesses… it wasn’t planned, it kinda slipped out….. I don’t know if it mattered or not to them but I did not get the job.

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

Joe: Don’t hide, get help!

BSS: Anything else you’d like to add?

Joe: Thank you for this opportunity!

Jess

BSS: How long have you known that you are living with a mental illness?

Jess: Really I have known since I was 13 when I started having suicidal thoughts. I kept it all to myself but would have days where I was moody and my parents thought I was just being a teenage girl. They sent me to a counselor where I lied and said what they wanted to hear because I was already dealing with epilepsy and refused to have another diagnoses.

BSS: Can you share with us your diagnosis/diagnoses?

Jess: Absolutely. I was originally diagnosed with depression and anxiety. As time went on I was diagnosed with bipolar, borderline personality disorder, PTSD, and anxiety. I also believe I have a social anxiety because I can’t be around a lot of people or else I have an anxiety attack.

BSS: When were you diagnosed with these?

Jess: I was originally diagnosed in February of 2010 but November of 2012 was when I got the updated diagnosis.

BSS: How were they diagnosed?  Did you have any special testing?

Jess: I was having suicidal thoughts and my fiancé Joe who also has bipolar said I needed to get to the hospital. Through a week of supervision and what seemed to be a year’s worth of questions regarding family history and such the hospital said I had major depression.

BSS: Was your illness diagnosed correctly the first time, or did it take time before the right diagnosis was arrived at?  Do you feel that you do indeed have the correct diagnosis now?

Jess: The original diagnoses was somewhat on the right track. After being in a group setting they figured out that my major depression was really the bipolar which I agree with and borderline personality disorder which I in all honesty am still trying to come to terms with. Is it a correct diagnosis? I believe with everything I am it is. Once the descriptions of each were read to me a lot of childhood memories came to mind and the “a-ha” moment came into play.

BSS: Have you ever been hospitalized due to your illness?  How many times?  Do you think it helped?

Jess: I have been hospitalized many times. In the year I was diagnosed I was in the hospitals probably three times. The year after I think two maybe three times I was hospitalized. Last year I think was two times and this year once in the hospital. It helped when I worked it and when I didn’t have distractions. There was one stay where a girl would cause fights with everyone and we would be on eggshells so treatment wasn’t really there. There were two other stays where all I wanted was to go home so I told them whatever it took to get me out.

BSS: Are you on medications for your illness?  Do they help?  What about side effects?

Jess: Currently I am on Lexapro. It did work for the longest time but now my body has adapted to it and it’s like I am taking flinstone vitamins. My last hospital stay I said I needed a change and they said I am already on the highest dose so I am stuck with it. Which kind of pissed me off because I know for sure there are other meds that I could have been put on. I have an appointment with my regular doctor soon to discuss a change.

BSS: Have you ever had ECT (Electroconvulsive therapy)?  How did it affect you?  Did it help?

Jess: I am actually scared to try it. It has never been offered to me.

BSS: What other things do you do to help with your illness?  Do you go to individual therapy?  Group? Other things?  What, if anything, seems to help?

Jess: Right now because I was raped by a fellow group member last year I am not in treatment. I left and now because I have no job or insurance it is very hard for me to find help. However I like to do mad libs, word searches, coloring, drawing and call me crazy but my fiancé will find me playing board games by myself. I have a love for board games and when no one will play I just play on my own for a distraction. I have recently applied to volunteer at a farm to work with horses, dogs and cats. I am a HUGE animal lover and would rather be around animals then humans. Animals are none judgmental and comforting.

BSS: How has your illness impacted your life (jobs, education, relationships, children, alcohol, drug abuse….._)

Jess: Oh jeez where to start. As far as education, I was going to Kutztown University and started having the lack of energy bursts as I call them. I didn’t want to get out of bed, take the 35 minute drive and sit in a class and hear what I always heard “blah blah blah”. Other factors played into me dropping out but I just couldn’t concentrate anymore. I was able to get my associates degree in Criminal Justice from a community college before I even attended K.U. I also went to school for my EMT which was easier for me because it was hands on. However, I couldn’t keep a job for more than six months. I couldn’t and still can’t take criticism and that is all I got. If a stranger walked up to me and said “you’re ugly” I would break down and say I am a horrible person and can’t do anything right and I am better off not around.  Being in a relationship with someone who is also bipolar is not the easiest thing. But if I were in one with someone who didn’t have a mental illness I don’t think I would still be here. He saved my life because he knew what to look for and saw it in me. When I feel lost and unsure of myself he knows what needs to get done. We really are each other’s support. I think either one of us would be lost without the other. We become codependent at times but we work through it together.

BSS: Have you ever felt discriminated against because of your illness, or had to deal with disparaging comments, denied a job or other opportunities?

Jess: Every day!! On a broad stand point every time I hear that someone who can’t take responsibility for a crime they committed so they claim insanity, I feel hurt and in a way discriminated. I went to get a gun recently so I can start hunting or just for shooting like I did when I was younger and I was told since I had a mental illness I wasn’t allowed to buy it. People call me crazy all the time. I was working for a company that let me go because I had said I needed off one day to go to therapy.

BSS: If you could give advice to someone else struggling with mental illness, what would it be?

Jess: Never give up. It is hard when struggling and you feel like you hit rock bottom. It is hard to believe in yourself and believe that you can get through this. But the one thing I have always done was think of two people I could hurt if I hurt myself. Giving up is always one of the best options for us. But you have to believe that no matter what is going on you can get through it. The second you give up is when you end up in the hospital. Also, never stop your meds. A big thing I have done was stop taking my meds because I “felt better” when in reality it was the meds working. People claim doctors are poisoning you by filling you up with meds. These people I hate. These meds can take up to 6 weeks to start to work and sometimes they don’t work at all. So the med has to be switched. It took almost a year to get on the right med and now I know I need another med change. It isn’t poison. Rat poison is poison. Meds are to help you. Give it time and give yourself a chance. Remember meds aren’t the only thing you should be doing. There are three parts to you getting better; medication, therapy and the most important you! Use positive coping skills. Treat yourself every once in a while and if you need it do not be afraid to take a time out from your daily life and take a couple days to get you back on track.

BSS: Anything else you’d like to add?

Jess: I must say up until now, I have fought back tears while going through this interview. Many people would never take the time to get to know someone with mental illness. I have been really lost because I push a lot of people including friends and family away. Are they disrespectful to me? No, I just feel the less people in my life, the less I hurt. Because of that I bottle stuff up and this interview has gotten me to open up about how I feel.  I am 26 years old, with a college degree, an EMT license and sadly on social security disability. I hate that I have to say that but I know I need it because I can’t work due to my illness right now. I get tossed in the system as I am told I am and then not eligible for Medicaid due to how much I make on ssd which is only $920 a month. I currently am fighting with the state to get something so I can get into treatment. Everywhere requires at least Medicaid or is $100 a visit. That alone is $400 a month. I have rent, phone, car insurance, a car payment and loads of bills. And truthfully if I could afford $100 a pop I really don’t think I would have issues right now.  At the moment I feel like giving up. I have felt that way for a while. If you aren’t suicidal you don’t get help. I think that is messed up. There is no way right now for me to get the help I need and am begging for and it bugs me that I know of people who caused their illnesses i.e. drug addicts and alcoholics who are in treatment and get right out and use again and don’t work the program. I didn’t cause this and I want treatment. They don’t make it easy for us to get the help we need. That is why most of us DO give up. Why should we care if no else cares enough to help us? But, this interview made me think that someone actually cared and that is why I now have tears. For the first time in a year someone other than my fiancé and family, I actually feel like someone cares enough to really get to know what it is like to suffer from these illnesses and for that I thank you greatly!

Jess can be reached through her blog, The Flip Flop Girl

Thank you to Joe and Jess, from the bottom of my heart, for your candor and openness.  I have a feeling your generosity in sharing yourselves here is going to help a lot of people!

Leave a comment

20 Comments

  1. manicmedic

     /  August 28, 2013

    Reblogged this on manicmedic and commented:
    I just had to share this, me and Jess had been interviewed for a blog piece on mental health stigma. Laura did an amazing job. I didn’t think someone could say something so nice about us. I think we just made a new friend. Thanks Laura!

    Reply
    • Thanks, Joe and Jess, for your candid, honest sharing. You truly gave of yourselves. I know your stories are going to resonate with others. You are both active advocates for yourselves, and that’s what we need to be in order to stay healthy. Now it’s about that issue of stigma affecting jobs and education….that’s what we’re here to get rid of! Together!

      Reply
  2. Joe, the spasms you have from Abilify? I’d bet my own experience with that exact med you have Drug Induced Parkinsonism. It’s not as scary as it sounds, and bullshit that it’s permanent — at least if you find something other than Abilify to take. All the antipsychotics carry risk for dystonic reactions, Abilify has a much higher risk for DIP, which you won’t find in the literature and your docs probably won’t tell you. Mine did, bless him. It was a miracle for me in every other way, but the severe tremors, bruxism (involuntary jaw-grinding), and a number of other things caused me to discontinue. I say now without a bit of hesitation it was the right choice.

    Jess, you should be scared of ECT. It’s the most horrifying thing ever, even when done “well” and “professionally”. I have PTSD from that, and I will have it the rest of my days. Don’t ever consent, I have never heard a story from anyone who has undergone it — Kitty Dukakis excluded — not filled with negativity, and I have heard many. I think it should be made illegal.

    Both of you, you are beautiful in the way you support each other and the way that you fight. Don’t you ever stop fighting, the world needs you.

    Reply
    • manicmedic

       /  August 28, 2013

      Thanks for your comment, as far as the muscle spasms from the ability. I only get them while I am laying in bed. Really nothing too serious, very rarely happens.

      I was never offered ect either but would never get it. My short term memory is shot as it is, I don’t need a jolt to take the rest from me.

      Thank you for your nice words, ill be sure to share them with Jess when she wakes up. Lol….

      Reply
      • If you aren’t vegan or lactose-intolerant, try 1,000 mg of calcium taken with a big glass of milk when your muscles bother you. Helped me, helped a friend on Abilify. Worth a shot, anyway. 🙂

        I’m rooting for you both. ♥

        Reply
        • Add an equal amount of magnesium, which is a great muscle relaxant in itself…but cut the dose down to 500/500 unless you want to spend some time in the bathroom. Magnesium relaxes smooth muscle as well as skeletal muscle, which is also why it’s used to slow down premature labor.

          Reply
  3. I think you are both extremely courageous and I applaud you. I truly hope you get the help you want and deserve to have. Being labelled with a ‘mental illness’ is in itself one of the cruelest things of all. I truly detest labeling people unless its for a good purpose.
    Backing you both. Susan

    Reply
    • I’m jumping in here with my two shekels just to say that it’s the stigma, not the labels, that causes problems. I have bipolar illness, so I carry that label. It helps because first of all if I start having symptoms, I can take a step back and say, “hey, guess what, you need to take today off because you have bipolar illness and if you try to push through it you might have to go to the hospital.” Another way the label is good is if you are in a school or work situation that is actually compliant with disability laws. Let’s say you are having an attack of generalized anxiety disorder and need to go home, NOW, take some anxiolytics, and go to bed. The label helps the administration to know what’s going on and give you the time off you need, just the same as if you started throwing up at your desk, you might get the label “gastroenteritis” for a while, and you would get to go home and recuperate. Am I making any sense at all?

      Reply
      • manicmedic

         /  August 28, 2013

        Absolutely

        Reply
      • Sorry this is a late reply.
        Yes I understand what you mean. I think the hard part is getting everyone to agree that the diagnosis is just that, if it needs to be labelled so that you can get better understanding. I have found that many use it to stigmatize by their attitude to the label. You know, if you have Anxiety disorder you can’t do such and such because you’re not as good as someone else.
        I find it such a shame that people can’t accept all the good others have to offer and focus on the problems. Perhaps idealism is too much for some.
        Does that make sense? I think we’re both on the same page but different paragraphs 😊.

        Reply
  4. jfavinger87

     /  August 28, 2013

    I would reply to every single one of you but I am really feeling a lack of energy right now as I have slept for a long time to wake up and refrain from reaching through the phone and strangling social services. As for the ECT I have always had a fear for it because it sounded horrific. And now I am definately never gonna take that route. Thank you for for your input on that. I appreciate everyone’s comments and words of encouragements especially right now. Long story short because I am very easily confused I applied for the wrong medicaid which resulted in a denial letter. I was on the phone with social services and the lady treated me with so much disrespect that it was unbelievable. I am glad I came to the blog entry and read all your comments which put a little faith in me.

    Reply
    • I’m so sorry that happened to you. Being poor on top of having mental illness issues–well, it’s like a merry-go-round that it’s hard to get off. And for some reason people think they’re justified in treating us like the dirt on the bottom of their shoe, just because we need to apply for services.

      Bottom line, now that you’ve made a new application, maybe you’ll be accepted this time! Hope so!

      Don’t feel pressured. These and more comments will be here for a very long time, and you can reply any time you feel inspired to.

      Reply
  5. What a FANTASTIC POST & Interview, I ADMIRE you Both, and am Truly Inspired by your story. I battle from Bipolar ll and Panic with Agoraphobia while being in Recovery from Compulsive Gambling, which is how was FINALLY Diagnosed properly with the Bipolar. I know I suffered for years with it. Thanks for sharing your story………I’m going through a Life Change myself and am Blogging about a Life Change At 50 of having to Relocate, while being in recovery and having Mental Illness. My world has been turned Upside down the last 3 weeks……I HOPE I can make it through all of it!! Hugs & Blessings to you all,
    Author, Catherine Townsend-Lyon http://CatherineLyonaddictedtodimes.wordpress.com 🙂

    Reply
  6. savemefrombpd

     /  August 29, 2013

    Thank you for both sharing your stories.

    Unfortunately, it is struggle after struggle with mental health but hopefully there is light at the end of the tunnel.

    The best we can do is blog for the sake of ourselves to put it down on ‘paper’ and share it with the world. Educate, connect and support.

    Reply
  7. I know no one commented on this post in awhile but I just wanted to update every one who would want to know. We were married on October 26th. It was a small ceremony. We just wanted to thank everyone again for the kind words!

    Joe and Jess

    Reply
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