Today’s interview is focused on: Schizoaffective Disorder.
It seems that few have heard of Schizoaffective Disorder, and with only 0.3% of the world’s population diagnosed with this, you can see why it doesn’t receive much attention.
Mayo Clinic describe this condition as, ‘… in which a person experiences a combination of schizophrenia symptoms, such as hallucinations or delusions, and mood disorder symptoms, such as depression or mania.’
Due to its rarity, I was excited when someone who lives with this disorder, seemed happy to be interviewed, and especially keen on raising awareness of this difficult condition.
I hope that their words can help anyone else living with Schizoaffective Disorder feel less alone.
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I first realised I had a disorder when my depression was bad enough that it was severely interfering with my schoolwork in college. At the time, I thought I was only dealing with anxiety and depression since that was what was impacting my day to day the most; I didn’t realise that I was psychotic at all until around half a year after I figured out I was depressed, when the symptoms of schizophrenia got significantly worse. Looking back, I can recognise that I’ve had symptoms related to schizoaffective disorder from a very young age and honestly I’m still surprised no one realised anything was wrong, but I did come to the conclusion that I was ill on my own.
I was very reluctant to seek help even when I thought I only had depression, even though it’s relatively common, especially among college students. Honestly, I’m not sure if I would have sought help at all if I realised that I was schizoaffective, but by the time the symptoms of schizophrenia and the mania of bipolar became severe, I was already in therapy and seeing a psychiatrist. There reached a point where it became clear that my doctors didn’t know how to treat me and that I needed to start intensive outpatient at a hospital. Even though I knew I needed to seek help specifically for schizoaffective disorder, I was very, very reluctant to do so. No matter how many times I do it, I’ve always found a lot of shame in relaying symptoms to doctors. There’s always the fear of judgement for symptoms that sound bizarre or that the doctors just won’t know how to treat you. That shame and fear was a serious deterrent for me seeking help for my disorder.
The best description I have of being diagnosed, is that I felt both elated and horrified at the same time. On the one hand, there’s a profound sense of relief and validation that comes with being diagnosed. There’s confirmation that other people out there are going through what you are, that you’re not alone. There’s also a feeling of validation. I honestly can’t remember a time without symptoms of schizoaffective disorder, which made me think that what I was experiencing was normal and something everyone else dealt with as well. I felt that I had some personal failing that I wasn’t able to cope with what I thought was typical, that I was being dramatic over something I should be able to take in stride but wasn’t able to. Getting a diagnosis was like getting permission to struggle. It wasn’t that everyone else was able to handle what I was experiencing, it was something they weren’t experiencing at all. This impossible standard that I thought I was failing to meet just wasn’t there anymore. Coupling that with knowing I wasn’t alone in struggling was relieving. On the other hand, there was definitely a sense of horror that came with my diagnosis. All those things I thought were “normal,” so many things that I had accepted as a fact of life were something that made me abnormal and ill. It made me feel different in the worst way, like I was something broken and terrible. All the associations I had with schizophrenia and bipolar were inherently negative if not outright damning. Schizophrenics were murderers, bipolar people were unstable, both were dangerous. It took a lot of effort to not take those labels on myself and make them a part of my self-image. On top of that, my diagnosis was a life sentence. Depression and anxiety could go away with time, but I would always be schizoaffective. No matter how many coping skills I learned, it would always be something that I had to cope with and struggle with, which brought a sense of hopelessness. No matter how relieved I felt, being diagnosed came with too much baggage to really be a positive experience.
I’ve been both incredibly lucky and unlucky with my treatment. My luck came with my medication. It took over three years of trial and error to find a dose that helped, and though I am definitely heavily medicated, the medication has been pretty affective. My psychosis will never be gone and my mood will never be entirely stable, but the frequency of my symptoms went way down. I know that for a lot of people, medication isn’t as effective as it is with me. In this area, treatment definitely helped. On the whole, though, I’ve had a decidedly negative experience with seeking help. The fact of the matter is that schizoaffective is an uncommon disorder and most professionals just aren’t trained to handle it, especially the schizophrenic aspect. Some doctors won’t admit that they’re out of their depth, leaving it on you to realise that the treatment is harmful, not helpful. This behaviour is outright dangerous. When you’ve only recently been diagnosed and are unfamiliar with treatment, it’s difficult to know when you’re being given bad advice. Though it’s difficult, I’ve found that it’s entirely on me to be critical of my doctors and be skeptical of everything I’m told, since most won’t admit they don’t know what they’re doing. Despite not being trained enough in handling psychosis in particular, many doctors are condescending, judgmental, and rely on stereotypes. I’ve been told many times that “real” schizophrenics don’t know when they’re hallucinating or delusional. I’ve been told that my delusions can’t really be how I describe them because they’re “too outlandish.” I’ve had professionals make faces and scoff. In my experience, mental health professionals have no faith in psychotic people understanding their own experiences and believe that they understand your illness more than you do, some even going so far as to correct you on your own experiences. I’ve never been able to see a specialist, so I don’t know how treatment varies in that situation, but I’ve found mental health professionals to be useless at best, if not outright damaging.
Living with Schizoaffective disorder is like walking through a mine field; one wrong step is all it takes for things to go incredibly wrong. You never know when symptoms will come up entirely unprompted, when they’ll be mild or debilitating. Waking up each morning is like rolling dice, you never know if you’ll be symptom-free or hanging on by your fingernails. Even when you are able to figure out what specific things will set off an episode, you’re left tip-toeing around your triggers as best you can. Sometimes completely innocuous things trigger you, and it’s just impossible to avoid. Even if they are avoidable, you’re left trying to make up excuses to avoid certain things and hope that people believe you, because you can’t always tell people the consequences of facing a trigger. Accepting being schizoaffective is, in a lot of ways, an uphill battle. I’ve been diagnosed for about five years and in that time I’ve made my peace with it as best I can. I’ve found the biggest struggle with self-acceptance is that there always seems to be a new symptom. Even after all this time, there are still things I thought were “normal,” only to find out they’re also symptoms, which always makes me incredibly ashamed. Over time, I’ve more or less been able to overcome that shame, but it’s something I always have to work on, like it’s a hole I can’t dig myself out of.
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I felt incredibly grateful for her open honesty, it really brought to light so many experiences that normally aren’t discussed, such as the intense feelings a diagnosis can evoke, as well as how ‘treatment’ isn’t as simple as some might think. Later she goes on to talk about the responses from family/friends, and how she has dealt with the stigma surrounding schizoaffective disorder.
Next Time: Life With Schizoaffective Disorder – Part 2
We Don't Talk About That 