Guest Blogger: Schizophrenia and Schizoaffective Disorder – How they’re alike, how they’re different, and what it felt like to get each diagnosis

During my mental health journey, I originally received a schizophrenia diagnosis

It sounds strange, but I was a little excited when I received the schizophrenia diagnosis.  Not because I wanted to have schizophrenia, but because now I had a reason for why these things were happening to me. I had documented treatment methods. And it was something I could research and learn more about. That was something that was very important for me. Possessing knowledge about it made me feel like I had more control at a time when my world was spinning out of control.

The diagnosis also crushed me. At that point, all I really knew was the stereotype and the story of my uncle with schizophrenia who is unable to live independently. I feared that I would never be able to even come close to living the life I had always expected to live. Part of me gave up on myself immediately. Another part of me fell into denial. But the remaining part of me refused to give up hope. That was the part that kept me going. It was my sole motivation to follow my treatment regimen and keep living.

Right when I was starting to accept my diagnosis, it changed

My family and I bought books about living with schizophrenia. We researched the disorder. And then the diagnosis changed without warning: schizoaffective disorder. I felt a little deflated. Here I had hyped myself up preparing for life with schizophrenia, and now it’s something different? And it was something that I’ve never heard of before. I turned to the books we had bought. But I found nothing but short mentions and basic descriptions of the diagnoses and the debate surrounding it. I turned to the internet and came up with not much more than that. It left me feeling profoundly lost. I almost felt dirty or dismissed, like I wasn’t good enough for a diagnosis of schizophrenia. 

The schizophrenia diagnosis gave me a sense of security because I knew what it was, how it was treated, and heard stories from those who lived with it. I didn’t have any of that with schizoaffective disorder. We didn’t know what kind of outcome there might be, and I couldn’t find anyone who shared the diagnosis. I felt so isolated. Logically, I knew that I was not the only person in the world with schizoaffective disorder, but it truly felt that way sometimes. I desperately wanted to know that there was someone else out there who could understand what I was going through with this disorder. And those that I found were people living with schizophrenia. 

Are schizoaffective disorder and schizophrenia the same?

You may have seen myself and other advocates using “schizophrenia” and “schizoaffective disorder” together and sometimes interchangeably. Why is that? Are these two separate disorders or not? The answer, right now, is yes.

The controversy

The fate of schizoaffective disorder as a unique disorder has been a hotly contested issue for many years, and still is. Until 1980 the the most widely used diagnostic manual in the United States, the Diagnostic and Statistical Manual, actually listed schizoaffective disorder as a subset of schizophrenia. Schizoaffective disorder is often put on a spectrum between bipolar disorder and schizophrenia, with researchers and clinicians debating whether it belongs on one end or the other or as a standalone disorder in the middle as it is now.

When I first learned of the controversy, I remember thinking that if it ceased to be a diagnosis, what would that mean for me? For me, having a diagnosis made the disease tangible and manageable. It made it real. Would I have to start from scratch again?

How are they alike?

People with schizophrenia and schizoaffective disorder both experience symptoms of psychosis like delusions and hallucinations. Both depression and bipolar disorder can also come with symptoms of psychosis referred to as psychotic features.

Along with sharing the symptoms of psychosis, there is also evidence to suggest that schizophrenia and schizoaffective disorder also share physical changes and abnormalities in the brain. In the case of both disorders, both good and poor outcomes are possible. This means that some people will be able to manage symptoms and function highly, while others may have more difficulty managing symptoms and functioning in daily life. 

So what’s the difference?

What sets schizoaffective disorder apart from mood disorders with psychotic features and schizophrenia is the timeline and which symptoms play a larger role. While the mood symptoms must be around for the majority of the time, symptoms of psychosis like those of schizophrenia also need to continue for at least two weeks in the absence of mood symptoms. 

In comparison, any mood symptoms experienced by someone with schizophrenia won’t play as big of a role in their disorder. In the case of depression and bipolar disorder with psychotic features, the psychosis symptoms happen almost exclusively with mood symptoms. For those disorders the mood symptoms also must be the most prominent symptoms. Schizoaffective disorder is also more rare than schizophrenia. Only 0.3% of people are affected by schizoaffective disorder. For schizophrenia, about one in 100 people are affected.

Some say that schizoaffective disorder has a better prognosis than that of someone with schizophrenia. However, that’s not true in all cases. Many view prognosis as very individual. There are so many factors that come into play whether it’s schizophrenia or schizoaffective disorder. This includes things like age of onset, severity at onset, and how quickly someone received treatment. It doesn’t necessarily mean those with more positive outcomes haven’t suffered though.

Why do so many of us with schizophrenia use the terms together or interchangeably?

For both schizophrenia and schizoaffective disorder, the symptoms of psychosis are the same. Those of us with schizoaffective disorder often explain the diagnosis to others as a combination of schizophrenia and a mood disorder. This can be a helpful way to explain it because the majority of people have never heard of schizoaffective disorder or understand psychosis, though most have at least a basic knowledge of schizophrenia. Sharing so many symptoms also means that people with schizoaffective disorder and schizophrenia go through similar experiences. Both disorders also face a great deal of stigma in part because of these shared symptoms of psychosis. These shared experiences make it easy for us to relate to each other.

Coming together

It took time, but I have become comfortable with my my schizoaffective diagnosis. Having a name for what I was going through was helpful. But over the years, I’ve learned to focus more on my experiences and less on the word. Connecting with people with schizophrenia and hearing stories of others who live with that diagnosis was crucial to me accepting my diagnosis. The differences in the diagnoses didn’t matter to us. For many with either diagnosis, the symptoms of psychosis are by far and away the most difficult to understand and live with. It made me feel less alone to know that I wasn’t the only one who struggled with such stigmatized symptoms. It gave me hope. 

Those of us with schizophrenia and schizoaffective disorder have formed a community of sorts surrounding shared experiences with psychosis, fighting stigma, and spreading hope. Whether you have schizoaffective disorder, schizophrenia, or a loved one with one of these diagnoses, what the psychosis community wants you to know is that you should never give up hope.

Katie Sanford is a mental health advocate based out of the Chicago area who lives with multiple mental health disorders including schizoaffective disorder. Katie uses her story to break down the stigma surrounding mental illnesses like schizoaffective disorder and offer hope to those with diagnoses and their loved ones. She does this through speaking, writing, and her blog Not Like The Others.

Sources

American Psychiatric Association. “Schizophrenia Spectrum and Other Psychotic Disorders.” DSM Library, American Psychiatric Association, 2020, dsm.psychiatryonline.org/doi/full/10.1176/appi.books.9780890425596.dsm02.

Firman, Guillermo. “MedicalCRITERIA.com.” Medicalcriteria.com, 31 Mar. 2020, medicalcriteria.com/web/schizophrenia/.

Kanahara, Nobuhisa et al. “Onset Pattern and Long-Term Prognosis in Schizophrenia: 10-Year Longitudinal Follow-Up Study.” PloS one vol. 8,6 e67273. 26 Jun. 2013, doi:10.1371/journal.pone.0067273

Miller, Rachel, and Susan E. Mason. Diagnosis: Schizophrenia: a Comprehensive Resource for Patients, Families, and Helping Professionals. Columbia University Press, 2002.

Parker, Gordon. “How Well Does the DSM-5 Capture Schizoaffective Disorder?.” Canadian journal of psychiatry. Revue canadienne de psychiatrie vol. 64,9 (2019): 607-610. doi:10.1177/0706743719856845

“Schizoaffective Disorders F25-.” ICD-10-CM, ICD10Data.Com, 2020, www.icd10data.com/ICD10CM/Codes/F01-F99/F20-F29/F25-.

Torrey, E. Fuller. Surviving Schizophrenia: a Manual for Families, Patients, and Providers. Harper, 2001.

Wy TJP, Saadabadi A. Schizoaffective Disorder. [Updated 2020 Apr 15]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2020 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK541012/

THE RIGHT SPEED

The Right Speed

TW: Emetophobia, mentions of suicide

What is the right speed to deal with phobias and other negative thought patterns?

Over the weekend, my mom showed me an article in O Magazine with a headline I would think would be impossible. Entitled “Four Days to an OCD Cure?,” the article describes a four-day intensive, immersive CBT experience to overcome emetophobia. Since I’ve been afraid of vomiting since my earliest memories, I was fascinated by the process described in the article. Could something like that work on me?

When I first started to read about the woman in the article, I felt like she was a kindred spirit. I identified with many of the feelings she felt and the rituals she enacted to ensure minimum exposure to vomit in any form. I recognized the desperation she felt about reclaiming her life, but I didn’t know that there was a CBT treatment that could be done in only four days.

The article described her treatment in many familiar terms, starting with figuring out various levels of fears. In the article, the patient starts by learning how to touch a trash can that someone may have thrown up in at some point, and by the end of the four days, she watches videos of throwing up, watches people throw up in real life, and finally makes herself throw up. At the end of the process, she gains a greater independence and is able to take control of her life.

All of these steps are familiar to me as someone who has done exposure therapy in the past, but the idea of doing all of it in such a short time is very different to the CBT and exposure therapy I’ve done. When I met with my CBT therapist for the first time, she also had me construct a list of the various things associated with the main topic I was trying to get over - at this time, it was a fear of death and the negative thoughts about suicide that plagued my mind - but instead of doing everything at once, she arranged them in a pyramid.

The idea behind the pyramid was that I would start at the bottom, with the thing that scared me the least. She encouraged me to split my fears into many small steps. With each step, I would rate my anxiety, and I couldn’t move onto the next step until my anxiety level was halved, no matter how long it took.

I recently found note cards my therapist made for me as one of my first steps, with sentences like “He stepped in front of a train” or “She jumped off a bridge” that I was supposed to read aloud several times a day. Just exposing myself to the potential thought gave me a high number of anxiety, and it took many repeated readings of the cards over weeks to get to the point where I was at half of my starting anxiety.

From there, other steps included reading online articles, watching videos, and working my way up to writing scenarios that could happen about myself and other people I know. The overarching goal was to realize that - as one of my favorite mental health resource books put it - “thoughts are thoughts, not threats.” This meant that when negative thoughts popped into my head, I could take the time to process instead of immediately panicking.

When I read the article, I couldn’t imagine jumping to the top of the pyramid over the course of days instead of months. To me, it would require a ton of courage, determination, and strength that could backfire if it’s too difficult of an experience all at once. But for other people, drawing things out can lead to decreased motivation and more time without being able to function.

Only the individual in question can determine the right timetable for dealing with their own mental health struggles. I was thrilled to see that the woman in the story got a great result from the four-day program, but I doubt that I would be able to get a similar result. Regardless, it was wonderful to see in-depth coverage of OCD, therapy techniques, and mental health in general in a major magazine, and hope that stories like this can help introduce people to the fact that we aren’t that different after all.

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

TWICE THE TEST?

Twice the Test?

TW: Medical imagery

A blood test is stressful for me in normal times, triggering a variety of memories as well as my low tolerance for pain. When I found out I’d have to get my blood drawn during the pandemic, my anxiety soared. I tried putting it off for as long as I could, but eventually, I realized I would have to get it done.

After procrastinating for months, I’d built up the experience of getting a blood test during a pandemic to a very high level of fear. In addition to the usual pain and fear, I was anticipating feeling nervous because the other patients might not be wearing masks (I am currently in a state where wearing a mask is optional), the environment might not be clean (the outside of the building looks somewhat sketchy from the road), and in general, sick people tend to go to doctors’ offices and labs, so I could get exposed easily and then endanger myself and my family.

My real experience was very different.

I got to the small office right as it was opening, and aside from the nurse, I was the first one in the door. The place was immaculately clean and almost cozy in the arrangement of shelves full of test tubes and paperwork. I’d already filled in my paperwork online so that I wouldn’t have to touch the pen, but when the nurse realized I needed to initial in a few more places, I ended up not being nervous to touch the pen because of the plethora of Purell nearby.

It helped that I was the only patient, so I didn’t have to wait and have time to look around at all of the medical supplies that still raise my anxiety level even when I know they’re to help me, not hurt me. It helped that the nurse said I have good veins (a common statement from medical professionals), and that I could offer my left arm (using my right sometimes means it’ll reopen later from excessive typing if it’s a workday, and I’m very squeamish).

I started to follow my routine just like at any other blood draw, ignoring the pandemic as I took out my phone and scrolled to a cute new picture of my dog I’d taken the day before. I tried to pretend it was just his wet nose when I felt the cold cleansing swab on the inside of my elbow, and when she pulled my skin taut, I thought of how he sometimes pulls my skin like that when he anchors himself on me to stretch. 

And then, practically immediately after it was started, it was done, and it wasn’t even that bad. I got up out of the chair, paid, and left, driving home as easily as ever.

I tend to anticipate worst-case scenarios as easily as I breathe, and whenever I’m going into something that already scares me, I picture all sorts of horrible things. When I was navigating the complicated parking lot, for example, an image came into my head of having to get eight big tubes drawn (the most I’ve ever had to have), followed by the horrible sensation of a numb hand. Maybe the needle could even get stuck in my arm like what happened to me with a flu shot many years ago, or the nurse could miss, causing me a lot of extra pain.

In the end, though, the actual blood test was anticlimactic. I got two vials drawn, one big and one small, and it didn’t even hurt very badly when the nurse put the needle in or pulled it out. It was nothing like the experience I’d imagined, and it gave me hope for other upcoming potentially scary things.

I’ve made official plans to return to Chicago in two weeks, and although part of me is excited to go back to whatever parts of my life I can salvage at a time like this, I’ve been scared of a lot of things. My worst-case scenario planning predicted a lot of things correctly about the pandemic, and there’s a lot I can think of now that I would be terrified of. The one image in particular that sticks in my head is me wandering the apartment alone for hours upon hours, pacing in a frenzy, bored and lonely and desperate.

But this experience has helped show me that not every negative prediction I think is going to come true. It helps to prepare for alternatives, like how I completed the form online so I wouldn’t have to interact with the office supplies, but in the end, there’s no way to predict for sure how an experience will go. I could have had to take a lot more blood; my hand could have gone numb; I could have bled through the bandage even on my left arm. But in the end, none of those things happened.

I’m going to think back to this moment and see what I can do to reframe my thinking in the next two weeks. As I pack and prep, I want to make sure to give myself the best chance of having a successful trip back to Chicago. I don’t want to let my negative thoughts get ahead of me or sabotage me. Just like with the blood draw, everything could just turn out okay, and it’s that possibility that keeps me going as I prepare to live alone once more. 

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.

BEYOND THE SMILE: A JOURNEY....Guest Blogger

Trigger Warning: Suicidal Ideation

Today, if you saw me at Trader Joe’s you may think I have it all together. I generally smile in public, sometimes I have a bow in my hair. I speak eloquently and I have a Master’s degree from a prestigious university. However, if you knew what it took to get here, or you knew what was going on inside, you may be surprised. 

I have lived with mental illness for most of my life but I was not diagnosed nor did I start therapy until I reached a breaking point in college. At first it was a relief, wow, I now had a “reason” or some context as to why I was feeling constantly anxious, unsettled and sad. While suicidal thoughts were not completely new to me in college, it was during my sophomore year when things became unbearable and I came close to ending my life one day in January 2012. 

I took a medical leave shortly after that day, I needed a shift and that landed me in intensive treatment. I remember when I first left school, I sat in a new psychiatrist’s office where I was told I would start to feel better and that was unimaginable. However, my extremely hard work in treatment and therapy not only made life “bearable” it also made life worth living. 

What has arguably helped me the most though, a close second to therapy with my life-changing therapist, has been my journey in advocacy. Since I was diagnosed with anxiety, depression and an eating disorder, I felt a responsibility and a desire to share my story, to use my struggles as a way for others to see themselves represented and to deconstruct some of the shame living with mental illness brings for so many. Many of those with mental illness feel like they have to hide, where I have realized “I see you” like I really see you—beyond the smile at Trader Joe’s has been one of the most healing phrases, moments and feelings for me along my journey. 

Over the course of the last nine years, I have embarked on multiple projects, organizations and initiatives to share my story. I have started three social action organizations, created a documentary film and I proudly speak publicly at high schools and colleges/universities. With all that being said,I believe my greatest project so far is “Bake it Till You Make it Org” (soon you be Bake it Till You Make it LLC). This is an organization based in three prongs: creativity, connection and community. 

Creativity: I have published two (almost two) books which combine mental health storytelling and baking. As comfortable as I am sharing my story, mental health continues to be a difficult topic for many. However, I have found connecting baking and sharing recipes with mental health discussion helps make these conversations feel more “palatable”. 

Connection: In addition to the books, I have had the opportunity to create a means for connection for those in my community by hosting events that combine the same elements as the books. Ever watch “Nailed it!” on Netflix? How about enjoying the in person baking and decorating competition paired with a mental health presentation, highlighting the work being done in the community. Or an “Evening of Empowerment”: a night where strangers share stories only to be connected by (I) common experiences and (II) the ”dessert bar” at the end. 

Lastly and maybe most importantly, this organization brings community by forging connections, sharing stories and building bridges between discomfort and understanding. 

I believe one of the greatest gifts to the world I bring is my story, so I often ask others: what is yours?

Dayna Altman's upcoming memoir is titled Mix, Melt, Mend: Owning My Story & Finding my Freedom. You can learn more about Dayna and her many projects at  bakeittillyoumakeit.co or http://tiny.cc/nzqmsz.

REPLAY

Replay

As soon as I get in my bright red car, one of my first steps is to turn off the music.

Instead of the radio, I turn on my phone and go to my Pandora station of choice. I’ve got three set up for the specific purpose of writing, and as I pull out of the driveway, I sink into one of my favorite stories no matter which song comes on.

My playlists are carefully curated to match different story snippets and scenes I enjoy replaying in my head. Even in just the span of a single song, I can sink wholly into a story, on autopilot as I picture what happens to each character in the scene with every beat of the song. Even though I almost completely lack any sense of rhythm, I’ve got songs choreographed to the point that I know what action happens on what beat.

I can see a character dramatically drawing a sword, twirling on a dance floor, fighting a dragon, dealing with an assassination attempt, and taking an important exam - and that’s just the first five songs that came to my head. There are so many more that I’ve been creating for years, honing and refining my ideas until they meet my exacting standards.

Sometimes I’m drawn to a song by the lyrics, and other times, a beat reminds me of my story beats. No matter the song. just about any song-story combo can bolster my mood even in the toughest times. Earlier this week, as I contemplated leaving the safety of my parents’ home to return to Chicago, I started to feel nervous, and even felt tears coming on. I almost turned off one of my newest favorites as it came on. “I’m not in a good enough mood for this,” I thought, only to prove myself wrong as I was smiling by the end of the song. It pulled me out of my negativity and put the idea in my head that just like the character in my scene, I could overcome the fear facing me in that moment.

Of course, coming up with an idea for a new song-story combo is exhilarating, but I find it just as thrilling to relive the songs I’ve come up with for the fifth or even fiftieth time. If I’m in the right mood, I can go through a whole commute replaying one song the whole time, something that I’m aware would seem irrational to many people. After all, I know how the song is going to go, and how the story in my head will progress. It’s the same every time, but just like rewatching the “Lord of the Rings” movie trilogy, it’s comforting, safe, and guarantees a happy ending.

This pastime is my favorite solution for long commutes, traffic, and nearly any situation that requires waiting. I look forward to the time I can spend with my ears plugged, lost in the stories I’ve lived so many times. And even after my interest inevitably fades from a scene, I can still feel the rush of its associated song, and it still makes me smile. I rotate between my three playlists - modern, medieval, and retro - as my interests change, but I can always find solace in an old song.

I’m anticipating the need to use this technique more often in the upcoming weeks. I’m going to be returning to Chicago soon, trading out the safe, easy bubble of my parents’ home for my own apartment where I’ll have to venture out into the pandemic-ridden world a lot more than I have been. I’m working on exposure therapy to help defuse the tension of my fears, but I’m still worried about the time I’ll have to myself. I don’t have a routine for times like these, without going to work, and I know that boredom is one of my biggest triggers for negative thoughts and moods.

Although I’m going to need to turn in my two current fanfiction stories to their collection before I return, I am going to work on some of my favorite stories that always cheer me up. Maybe I’ll even write some of them down and see what people think of them; maybe I’ll expand on them in preparation for this year’s National Novel Writing Month in November.

My creativity has always been one of my favorite parts of my mental health journey. When I was younger, I saw it as a trade-off - that I could do things like sink into stories so easily because my mind gravitated to the “what if.” At various times when the world scared me, I could always find a home in my own head, even when my head was also a place of pain. I could choose to obsess about my stories, listen to a song on repeat until I know every word, and feel good.

When I come back to Chicago, my car will be in my parents’ garage, and I won’t trust public transportation, at least in the beginning. But when my mandated quarantine runs out and I can take walks, I’m sure I’ll take my headphones, and no matter what I see that scares me, I can make something beautiful.

Ellie, a writer new to the Chicago area, was diagnosed with OCD at age 3. She hopes to educate others about her condition and end the stigma against mental illness.