Saturday, 19 May 2018

Is My Friend or Sibling Underdiagnosed? Exploring Bipolar Disorder and the Sister Diagnosis of Schizoaffective Disorder

By Julie A. Fast

Fran and I are delighted to present the first in a new series of articles by author, writer, and family coach Julie A. Fast. Please read Julie’s book Take Charge of Bipolar Disorder to learn more about bipolar disorder management. You can post questions and comments below and we will pass them along to Julie.


Hello everyone! This is Julie A. Fast. It’s an honor to work with Marty and Fran to help the world discover their important work and how those of us with bipolar disorder so deeply need our friends. Friends (and siblings who are often our friends) need help understanding the up and down nature of our moods as well as our other symptoms that might not fit easily into a depression or mania category.

My goal is to teach you how people with bipolar disorder think and why we act in certain ways so that you can be a part of our healing as well as our happiness. We want and need you in our lives! I am also passionately vocal about the responsibility we have as people with bipolar disorder to Treat Bipolar First and not overwhelm friends with our mental health needs. It’s a tough balance, but it is possible.

This two part series is one close to my heart. In part one I explain the difference between bipolar disorder and schizoaffective disorder. In part two, I explain how the psychotic symptom of paranoia can ruin relationships if the symptom is missed or misunderstood.

Let’s get started!

Is My Friend or Sibling Underdiagnosed? Exploring Bipolar Disorder and the Sister Diagnosis of Schizoaffective Disorder

Bipolar disorder is a genetic illness that affects a person’s ability to regulate their mood. People with bipolar are average in terms of mood when stable, which means that bipolar is not a part of our personality. It’s an illness that sits on top of us as people. This is the main difference between bipolar disorder and personality disorders such as borderline or narcissism. People with bipolar have zero symptoms when they are not manic or depressed whereas people with borderline or other personality disorder illness will have symptoms which are consistent over time.

Without exception, bipolar mood swings are episodic. They can be darn long, but they have what is called a discrete beginning, middle and end. The only thing consistent about bipolar is that our moods are not consistent!

Anything that is consistent over time and is not episodic can’t be traditional bipolar. This is confusing as our mood swings of depression and mania can look exactly like other illnesses such as narcissism, borderline, hypochondria, explosive anger and schizophrenia. But bipolar symptoms are always encased in either a manic or depressed mood swing. And although I am repeating myself this is such an important concept I’m going to say it again: bipolar disorder mood swings have a beginning, a middle and end, after which the person with bipolar always returns to stability even if it is a brief stability.

My bipolar is disorder is chronic but I still know what it feels like to be stable. Stability is a rare rainbow unicorn for me, but it’s there and is always a goal.

(Please note that it’s uncommon for people who only have bipolar to self-harm. Suicide behaviors are common in bipolar but are not the same as self-harm. This will help you figure out what is happening with a friend: if you see self-harm you are seeing more than bipolar.)

What is Psychosis?

All people with bipolar disorder have the possibility of psychosis either during a depressed or manic episode, depending on their particular type of bipolar. What exactly does this mean? It means that the bipolar brain when depressed or manic can easily slip into psychosis as well. This is more common with full blown mania in bipolar one, but many people with bipolar depression get psychotic and simply don’t know what to look for in terms of symptoms.

Psychosis is simple. It’s a hallucination or a delusion. To reiterate, and to truly hammer this point into the ground, people who only have bipolar disorder can absolutely get psychotic, but it will only be when they are manic or depressed.

Hallucinations are of the senses. If you take your finger and point to your eyes (visual hallucinations are seeing something that is not really there,) your ears (audio or aural hallucinations are hearing something that is not really there), your nose (olfactory hallucinations are smelling something that is not really there,) your skin (tactile hallucinations where you feel there is something on your skin that is not really there) and finally your mouth (gustatory hallucinations where you taste something that is not really there) you have just described sensory hallucinations.

Delusions are more complicated. Delusions are false beliefs. They are not false thoughts or false sensations such as hallucinations. Delusions go much, much deeper into what is called an unshakable belief. Paranoia, the topic of part two of this series is a delusion. Delusions involve the real world and are combined with an imaginary world that feels just as real as what we call reality. For example, when a person believes they are being followed, they believe it. It’s not a hunch or a possibility; it’s a strong belief that has to be acted on. It is set in stone. It’s unshakable.

Psychosis is more common in bipolar one simply because the majority of full blown manic episodes come with psychosis, but many people who are depressed can get psychotic as well. It is very rare to have psychosis with hypomania. Think of psychosis in bipolar as case by case and the possibility that your friend or sibling may not even know they are having psychosis until someone explains the symptoms.

For example, if you notice that your depressed friend often asks, “Do I smell bad? Do I smell dirty?” you can look into other areas where they might be having hallucinations and make sure their health care team knows of this symptom.

And now, I’m finally to the topic of this article! I like to take the audience on a journey to get to a big topic as simply talking about schizoaffective disorder without explaining psychosis and the role psychosis plays in bipolar disorder makes the topic difficult to understand. But you are now ready!

What is Schizoaffective Disorder?

Schizoaffective means schizo (psychotic) and affective (mood). It is a genetic illness where a person has a full diagnosis of bipolar disorder and a separate diagnosis of a psychotic disorder that is made up of hallucinations and delusions. It is not bipolar disorder plus schizophrenia, as I will explain below. People with schizoaffective disorder get manic and depressed. They still can have psychosis when manic or depressed, but they can also become psychotic when they are not manic or depressed. In other words, they can be psychotic when the mood is stable.

(Please note, there is a schizoaffective disorder called depressive type which means a person has unipolar depression and a separate psychotic disorder. If you have bipolar and a separate psychotic disorder, it’s schizoaffective, bipolar type technically. But to be honest, most people mean bipolar type when they say schizoaffective disorder!)

I have schizoaffective disorder which means that I can go to a university class and be really happy to be there with a stable mood and then the overwhelm of the big class and being surrounded by people can trigger something in my brain that brings up paranoia (a psychotic delusion.) It was one reason college was so difficult for me.

To recap: people with schizoaffective disorder have bipolar disorder and a separate psychotic disorder. This is often misdiagnosed as bipolar disorder with psychotic features. There is not really a diagnosis of this type. The correct diagnosis is schizoaffective.

Does Schizoaffective Mean Schizophrenia?

NO. There are many types of psychotic disorders with schizophrenia being one of them. Those of us with bipolar disorder who get psychotic when we are NOT manic or depressed have a separate psychotic disorder that is made of hallucinations and delusions. We simply get psychotic. This is not schizophrenia. Schizophrenia has hallucinations and delusions, but also carries many more symptoms that people with schizoaffective disorder do not experience.

Please stick with me here if this is your first time reading about this diagnosis! It does get easier as you read more about these very interesting and interconnected mental health disorders.

If a person has bipolar disorder and psychosis (hallucinations and delusions) when not manic or depressed, this is schizoaffective disorder. If a person has bipolar disorder and schizophrenia, an illness that includes psychosis as well as many, many other symptoms this is not schizoaffective disorder. It is considered a separate diagnosis of bipolar disorder and schizophrenia.

I really like the Mayo Clinic webpage for a very basic explanation of mental health symptoms. Here is what they have to say about schizophrenia. Notice that it is much, much more than hallucinations and delusions.

If you are reading this and you visit the page about schizophrenia and you think, “Oh my goodness. My friend or sibling is showing signs of schizoaffective disorder or even schizophrenia,” what is your next step?

Here is what I recommend.

  1. Find out how aware your friend is about psychosis in bipolar disorder by asking questions. Part two of this article will show you how to talk about paranoia with a friend.
  2. Do your own research into the other symptoms of schizophrenia such as hygiene challenges, eye contact, social skill decline and cognitive changes and think about your friend or sibling’s behavior outside of mania and depression.

Then, decide what you need to say or do in order to keep the friendship stable and intact. It’s not the job of a friend or sibling to change another person. Our job as a friend or sibling is to learn what we can and then decide what we need from a relationship. You can’t save someone with a mental illness, just as I can’t save someone with a mental illness. But wow, can we make an impact by learning the signs and symptoms of bipolar disorder and possibly schizoaffective disorder or schizophrenia and addressing our fears and worries about what is means to care about someone with these symptoms.

By being honest with ourselves and admitting, well, it looks like my friend gets psychotic or my sibling is showing a lot more symptoms than just mania and depression, we will not be confused, but empowered.

Julie

 

About the Author

Julie A. Fast is the author of Loving Someone with Bipolar Disorder, Take Charge of Bipolar Disorder, Get it Done When You’re Depressed and The Health Cards Treatment System for Bipolar Disorder. Julie is a board member of The International Bipolar Foundation, a columnist and blogger for BP Magazine, and won the Mental Health America journalism award for the best mental health column in the US. Julie was the recipient of the Eli Lily Reintegration award for her work in bipolar disorder advocacy. She is a bipolar disorder expert for the Dr.Oz and Oprah created site ShareCare.

Julie is CEU certified and regularly trains health care professionals including psychiatric residents, social workers, therapists and general practitioners on bipolar disorder management skills. She was the original consultant for Claire Danes for the show Homeland and is on the mental health expert registry for People Magazine.

She works as a coach for parents and partners of people with bipolar disorder. Julie is currently writing a book for children called Hortensia and the Magical Brain: Poems for Kids with Bipolar, Anxiety, Psychosis and Depression. She struggles a lot due to bipolar disorder. Friendships keep her going.

You can find more about her work at www.JulieFast.com and www.BipolarHappens.com.

 

Wednesday, 16 May 2018

Crossing Roads

By Roiben

We all hope in today’s society with its constant rush and pressure that people can still be good, helpful and polite. That we would, upon seeing a person in need, stop like the much-fabled good Samaritan, and help. That we would hold doors open, offer to carry heavy bags and help an older person across the road.

However, there is such thing as being a little over-eager to help and perhaps misguided in how to go about it. I have recently begun using a long cane. Michael Cane, my new and trusty friend, is helping me get about my daily life. I had been warned that using the cane does have its drawbacks, in attracting overly helpful people. It was still a shock to the system when it happened.

I was walking a well-known route from an underground station to work. This involves crossing a few roads. I stopped at the traffic lights to the first road and prepared to wait for the lights to change. Out of nowhere a man grabbed my right arm (the arm holding the cane). He had said nothing to me up to this point. He pulled me forward a step, then signaled for me to stop by pulling my arm backwards. At that point he said “It’s red.” It took me a few moments to realize he meant the traffic light, not my stripy cane. We waited, then a lady on my right (who apparently was with the man) said “Go” and we all walked across the road.

I was glad to get across the road safely, but would have much rather done so under my own steam like I do every other week-day. The key thing here is not that the couple wanted to help me. It was how they went about it.

There is a rather over-zealous belief in today’s society that the disabled need to be helped. By this I mean a belief that we are not capable of making decisions and doing things for ourselves, so we need help to do it. In taking my arm, the man had decided I needed help to cross the road, due most likely to my cane. In doing so he removed my ability to choose for myself whether or not I wanted assistance.

This is a common thing: people “helping” disabled people because they have a cane, a wheelchair or otherwise. I have heard stories of people being pushed across the road when they did not in fact want to go that way, or being dragged to places they had no intention to go to. All because someone has assumed that is what is wanted and wants to “help”.

So, what point am I trying to make? Yes, it is a good thing to want to help your fellow human. However, doing so in a way that removes their independence, choice and in many cases dignity, is not good. I would ask that if you want to help, do one simple thing first: Ask. Ask the person with the cane, or dog, or wheelchair if they want help. They may say yes, they may say no. The point is that it should be up to the disabled individual if they require assistance in that moment.

I have had many people ask me if I want assistance. In most cases I say thank you, but I am okay. Because in all honesty, in most cases I am fine. I know where I am going and how to get there. I am still so new to using the cane that I haven’t yet been in a situation where I have needed help. I have not got lost yet or had my normal route changed to the point of disorientating me. It will happen, eventually. It just has not happened yet.

There are some indicators that a person may need help and that help would be gratefully accepted if offered. Firstly, as with non-disabled people, if someone is standing looking lost or distressed, especially if it is somewhere with many junctions, such as a tube station. Or, if someone with a guide dog is standing or sitting, and the harness is not being held (but the lead is). This may mean the individual needs assistance. In both of these cases, you should introduce yourself and then ask if assistance is needed, and what assistance that may be.

A person in a wheelchair who is just sitting looking around may well be taking in the weather – so don’t assume they need help and certainly don’t go about pushing them around places without first asking. They may have a mobility impairment but that doesn’t mean they are incapable of making decisions for themselves.

In my experience those of us with disabilities are great at adapting to the world we are faced with and are fabulous problem solvers as a result. Some of the cleverest people I have ever had the pleasure to meet have been disabled.

 

About the Author

You can find Roiben on Twitter (@roiben).

 

Wednesday, 9 May 2018

Team Gum: How Fran and I Share Our Mental Health Journey

“You’re stuck with me now, Frannie. I hope you realise that.”
“Like gum on my shoe.”

Fran and I are a team. Team Gum. That’s the starting point for pretty much everything we do, especially in the mental health arena. Our book. Our blog. Our social media presence. Podcasts. Interviews. Events. Book readings. Everything.

There are no hard and fast rules for how we balance things between the two of us and with the many other aspects of our lives. It depends on the nature of the work itself, our individual skills, experience, and preferences. It also depends on our commitments, health, and whatever else may be going on in our lives at the time. I thought it would be interesting to take a look at how it all works for us.

Mental Health Experience and Awareness

It is no secret that before I met Fran I had little knowledge or awareness of mental health. Fran had a lifetime’s worth which she shared, and continues to share, openly and honestly. Mania. Depression. Suicidality. Fatigue. Pain. Insomnia. The realities of living with chronic mental and physical health conditions.

I learned from what Fran told me and by spending time with her every day. I also learned from the books I started reading, from courses and workshops, and by engaging with others.

None of this means I really understand what it means to live with illness but I do believe it helps me set Fran’s lived experience, and that of others, in a broader context. And I have grown first-hand experience as a friend and caregiver.

Technical Skills

Fran worked as a highly successful electrical engineer before illness struck. She is technically competent which is a huge benefit, given that we live three thousand miles apart and do everything together online.

I work in the technology services industry (but please don’t ask me to troubleshoot your laptop or printer!) and have a fair measure of web, graphics, and computing experience. I love the technical side of running our social media, website and blog. When either of us is away from home I take the lead in ensuring we can keep in touch.

Writing and Creativity

Fran is a far more natural writer than I am. She is also a keen and accomplished photographer. She took the portrait photographs for her book For the Love of Peaks: Island Portraits & Stories: A Collection.

On the other hand Fran’s creativity depends a great deal on her health, energy and focus. The effect of illness on her motivation to create, her ability to do so, and the nature of her output (her writing in particular) can be profound. This is something we describe in our book. It makes it hard for Fran to work steadily at a project over a prolonged period of time.

I am more methodical and structured when it comes to writing. These are valuable traits when working on a long term project like a book, or committing to a blogging schedule as I recently have with bpHope.com, but they come at a price. I struggle to connect with the creative flow, not least because I tend to self-edit as I write. It is something I continue to work with. For example, I am currently experimenting with writing my blog posts out longhand in one of my Midori notebooks and typing it up later for editing.

Energy and Focus

Creativity aside, the tidal nature of Fran’s symptoms means she does not always have energy or focus to devote to projects. I provide the more or less stable structure to our work, keeping things moving forward so that Fran can contribute as and when she is able.

As far as possible we schedule our work around Fran’s health, allowing time in between for rest and recovery. At least, that’s the theory. We don’t always get it right. In the months leading up to our book’s publication we were working flat out with our publisher to get everything finished on time and to standard. I did most of the editing but each chapter, indeed every sentence, was proofread several times by us both. Fran was heavily involved at every stage including contract negotiations and book cover. She took a series of photographs which contributed greatly to the concept development, although they weren’t used in the final design.

We had an online cover reveal, and a book launch which was hosted online by us both and in person by Fran. This was followed by a book reading and charity fundraiser at a venue in Portland, Maine. Almost all the physical work for that fell to Fran and she hosted the event, with me attending virtually on a big screen at her side via the magic of the internet. In addition to all this we arranged interviews and podcasts, and there were marketing and promotion leads to be followed up.

It was the culmination of four years’ work. It was very rewarding but also exhausting and frustrating. It led ultimately to Fran getting severely fatigued and sick. She needed a prolonged period afterwards to recuperate.

Mental Health Community

Early on, our mental health contacts were all on Fran’s side of the Atlantic. Mostly these comprised her professional support team and people she had met over the years. As Fran’s friend and caregiver I got to know, and be known by, many of these people and organisations. Maine Health. It Takes A Community. NAMI Maine. Family Hope. Over time we started connecting with mental health groups and individuals online. Many of these were also in the US, including Stigma Fighters and No Stigmas.

At some point I recognised that I needed to up my game and connect with the mental health community here in the UK. My first approach was to Time to Change, the UK-wide charity campaigning to end the stigma and discrimination associated with mental illness. It was one of my wisest moves, and led to me connecting with many wonderful folk.

Much of our outreach is done online through social media but I have taken up the opportunity to attend events here in the north-east of England and further afield, including speaking at a mental health event last year in Ely.

For someone who used to have no social life and little in the way of social skills (the two facts are not necessarily unrelated!) it is a wonder and a delight to me that my life has changed so much.

It is interesting how our social skills complement each other. Fran is brilliant at meeting new people, which is a boon on vacations where she will strike up conversations with folk she has never met before. She finds it harder to maintain connections and friendships long-term. I have always felt more comfortable with established relationships, although I am learning to relish new connections and first time conversations. I have certainly “come out of my shell” to the extent that I now enjoy the people side of our work.

Visibility and Risk

Much of our motivation for working in the mental health area is to challenge stigma and discrimination, and to share the message that living with mental illness does not preclude or prevent deeply meaningful and mutually supportive relationships. The flip side of that coin is that stigma and discrimination really do exist and are rarely pretty. We risk negative reactions any and every time we raise our heads above the parapet. Every Facebook post, every open and honest conversation, may bring unwanted and unwarranted reaction.

The risk falls more on Fran’s head than mine. She is the person living with illness. She is the one with the diagnoses, the one whose symptoms, behaviours, and situation are being described or explored. With very few exceptions I have felt listened to and supported when talking about our friendship, about our book and work together, and about other crisis events in my own life. Fran on the other hand has personal experience of harsh and stigmatising treatment at the hands of others, and we go out of our way to protect against that happening again. It is part of the reason I am more of the “public face” of Team Gum.

Commitment and Motivation

A few years ago Fran and I spent some time coming up with vision and mission statements for our mental health work.

VISION: Our vision is a world where no one is too far away to be cared for or to care.

MISSION STATEMENT: To inspire connections between the ill and the well for a stronger more compassionate world.

Fran expresses her commitment with characteristic simplicity on her social media profile: “Passionate about making invisible illness visible.”

I recently changed my Twitter handle to include the words “#MentalHealth Author and Advocate.” This has brought me some negative feedback from people who see it as self-aggrandisement, or that I imagine I always know what to do or say to someone living with a mental health condition. Nothing could be further from the truth! I thought long and hard before claiming these labels. Doing so acknowledges how central our work has become to my sense of who I am and what I can contribute. No more, no less.

Just about everything I do or am involved in is part of our joint commitment to effect positive change. If I often take the lead it is because I have fewer challenges to face, not because I am more committed or passionate about what we are doing. I am encouraged and supported by Fran at every step.

We bring different things to the party and complement each other well. It is fascinating to me to witness how we have grown and learned from and with each other over the almost seven years we have been friends.

 

Wednesday, 2 May 2018

First Steps: Orientation and Mobility Training and Canes

By Roiben

I was first offered the Orientation and Mobility Training to use a cane when I was a teenager. At that time the last thing I wanted was something else to differentiate me from my peers. I always regretted that decision. As I grew older and travelled further and more often, the idea of something which could help things be a bit better became more appealing. So when, at the beginning of the year, my Sensory Services adviser from the local council suggested putting me forward for Mobility Training I naturally agreed.

Today I had my first meeting with the Mobility Officer and she agreed that a Long Cane would be good for me. I got to try a cane to see how it felt. Even from those few steps in my small flat I felt the potential. I am now booked in for once weekly training in using a cane, with specific focus on stairs, walking in the street and a little on using escalators. The specifics and focus change from person to person depending on individual needs. In my case these were the things highlighted as needed when I described my issues to the Mobility Officer.

So, what is Orientation and Mobility Training and what is a cane? Most cultures are familiar with the stereotypical image of a blind person walking along sweeping or tapping a white stick in front of them. That white stick is a cane. I am focusing on the canes used for visual impairments here — the word cane is also used when referring to mobility aids such as walking sticks.

There are actually four types of cane. The first is the Symbol Cane. This shows that the person holding it is partially sighted, that is they have low but useful vision. It is typically held in front of the person and quite close and is much shorter than the other canes.

The second is the Guide Cane. This cane is longer and is used for finding obstacles in front of the individual. It is typically held diagonally across the body.

The third, the Long Cane, and the one I will be trained in using, is probably most people’s stereotypical view of what a visually impaired person would be using. It is the longest of the canes and you need specialized training in order to use it.

This training is called Orientation and Mobility training (or O & M for short). This instructs individuals who are blind or visually impaired how to travel safely and effectively. Orientation is about knowing where you are at any given time. Mobility is about how one gets safely from A to B. This is the training I will be starting on Monday.

The fourth cane is the Red and White cane. Any of the other three canes can be banded with red and white stripes, and the Long Cane I eventually get will have this colouring. The red and white stripes symbolize that the person using the cane has both visual and hearing impairments. There is a shocking lack of awareness of this despite it being in the Highway Code. Deafblind UK explain it much better than I can and include a link to the specific Highway Code sections, just in case you don’t believe it.

I am excited to start the training but as with anything new, I am also anxious about it. I have done research online into Orientation and Mobility and I have asked people in Facebook groups about their opinions on canes, what the pros and cons are, and what they thought of training. One of the key things I have picked up from this is that canes can be incredibly helpful, although they also draw a lot of attention and the occasional unexpected grabbing of the arm to “help”. I will say here, always announce yourself first and please ask if the individual needs help before dragging them off somewhere!

I was also told that training works best when blindfolded. I have had a panic about this: How am I meant to know what the trainer is trying to get me to do with a blindfold on? How could this possibly work? I have a severe hearing loss and wear hearing aids which typically squeal when subjected to things like blindfolds, phones, ear muffs etc. Even with the hearing aids I am largely reliant on lip-reading to figure out what someone is saying. Even with people I have known for years and who talk clearly and loudly (such as my boyfriend) I need to lip-read to fill in the blanks that residual hearing doesn’t pick up (typically lip-reading picks up 30–40% of speech, if you are good at it).

So yes, I am anxious, but am sure I can let the Mobility Officer know about this. She knows I class myself as Deaf. She is getting me a Red and White cane and in our first meeting, made sure to check I was okay with lip-reading her (not all deaf people can lip-read) and that I didn’t need or prefer an interpreter for switching to BSL (British Sign Language). She also made sure I could see her to lip-read when she stood across the room to show me the primary technique used with the cane (sweeping).

As I am very new to all of this it would be great to hear from more people, whether blind, partially sighted or deaf-blind. What are your experiences of Orientation and Mobility training and the use of canes? Do you have a preference of cane and what are your experiences of using them in the Big Wide World of people out there?

 

About the Author

You can find Roiben on Twitter (@roiben).