Welcome to #SchizoChat, the biweekly forum where I ask questions, take questions, and post facts about some #schizophrenia-related topic every ~5 minutes for two hours! Today’s topic: "So, you've just been diagnosed with schizophrenia, now what?"
I’m not an expert on these topics—I’m merely an individual with schizoaffective disorder hoping to get a conversation going and #EndTheStigma. Please correct me if you notice I’m saying something incorrectly, and please share! #SchizoChat
This topic, like most, can get really personal, so please respect each other’s opinions! Or their right to have an opinion at least. #SchizoChat
I try to do this on the first and third Wednesday of every month (schedule permitting). If you’ve missed any of the previous #SchizoChat-s you can check them out in my pinned tweet here:
If you have any suggestions for potential topics to cover please let me know! I’m planning on doing this until I run out of spoons/ideas. #SchizoChat
When I was diagnosed with schizoaffective disorder I was super lost and overwhelmed. I started looking for resources and found that most are written for caretakers rather than patients. #SchizoChat
Last week’s #SchizoChat focused on caring for someone with schizo-type disorders, but what if that person is you?
This week’s #SchizoChat will be addressed directly to recently diagnosed schizo folks (like me!)—but of course I’d love everyone to read along and learn more about schizo-type illnesses!
For many folks (myself included) getting a schizo diagnosis is a long process. #SchizoChat
The illness generally develops when patients are in their mid-twenties. For some folks, it appears as a bewildering avalanche of symptoms—the sudden onset of hallucinations, delusions, paranoia, catatonic dysfunction, etc. #SchizoChat
For other patients, like me, it is a slow build. I had brief hallucinations as a kid which slowly built in frequency as I aged until it was happening 10+ times/day. I went from being a “moody” teenager to having dramatic manic-depressive swings #SchizoChat
For some patients, this diagnosis process is a journey. I was diagnosed with depression, then anxiety, then bipolar II disorder, then OCD, then finally schizoaffective disorder. #SchizoChat
Have you experienced a wealth of mental health diagnoses? Let me know in this poll! #SchizoChat
By the time I hit the final diagnosis it was a “well, finally, something to describe what I experience” sort of moment. But it was stressful having to come to terms with each successive diagnosis. #SchizoChat
For other people, the diagnosis can come as a total surprise. Why? Many people think of #schizophrenia and other disorders as being too debilitating—other people have it but I’m not like them! That sort of thing #SchizoChat
Other people may be simply surprised because they have never heard of the diagnosis before. I’d never heard the term “schizoaffective” but “combination of bipolar disorder and schizophrenia” made more sense. #SchizoChat
Still others may be caught off guard by the diagnosis because they don’t think anything is wrong with them at all. Remember—as many as 50% of schizophrenic patients don’t believe they are ill! This is one symptom of the disease. #SchizoChat
If you’ve just been diagnosed with a schizo-type illness you are likely feeling a range of emotions. Surprised, relieved to have an answer, scared, angry… these are all natural responses to any diagnosis, especially the diagnosis of a severe chronic disease. #SchizoChat
How did you respond to your mental illness diagnosis? Let me know in this poll! #SchizoChat
I was initially relieved to finally have a diagnosis that seemed to fit my symptoms. I wanted to know more about the illness so I started to read articles and books. I got obsessed and I got scared #SchizoChat
Schizo-type illnesses include a suite of symptoms that range in severity. A thorough description of the disease will include all possible symptoms, and some of them are super scary. #SchizoChat
I knew about the hallucinations and delusions, as I experienced those frequently. I hadn’t really heard of the catatonic-type schizophrenia, where patients fall into immobile stupors. These can be short-term or long-term. #SchizoChat
The idea of catatonic-type schizophrenia scared the shit out of me and still does. I have a job, a partner, dreams of having a family. I don’t want to lose my ability to work and take care of myself, even temporarily. #SchizoChat
The more I read about the severe symptoms of schizophrenia the more scared I became. I started to look for models of schizo-type patients who weren’t suffering the fate that so terrified me. #SchizoChat
I don’t know anyone who struggles with psychosis in real life (or anyone that admits to it, anyway). I turned to the media, only to find that most portrayals of schizophrenia involve intense violence, forced institutionalization, things that scared me more. #SchizoChat
The more scared I became the more depressed I became. I started to lose the ability to take care of myself as I spiraled, and my fears became self-fulfilling. I was scared schizo would take away my ability to do the things I loved and it sure was. #SchizoChat
I won’t lie and say that I have found the solution to this—it is something I am still struggling with! But I have found a lot of helpful tricks and tips that I’ll share in today’s #SchizoChat
So you’ve just been diagnosed with schizophrenia or some other schizo-type illness. What should you do to avoid a soul-crushing spiral like I experienced? In no particular order, here are my insights! #SchizoChat
As I mentioned previously, you’re probably afraid, angry, upset, etc. with your diagnosis. First thing’s first—that is okay! You are allowed to be all of those things. Give yourself the space to grieve your diagnosis if necessary. #SchizoChat
It can be really helpful to talk to a professional, not only for the more classic symptoms of schizo-type illnesses (psychosis, etc) but also simply because it’s a sort of scary diagnosis to come to terms with. #SchizoChat
How do you find professional care? It’s helpful to know what the options are! Cognitive behavioral therapy and other types of talk therapy can be super useful. What are the different types? I summarized them all here in a previous #SchizoChat:
We tend to use terms like “counselor,” “therapist,” and “psychologist” interchangeably but there are some important distinctions between these professional fields. I’ve briefly summarized them here in this previous #SchizoChat:
If talking to someone one-on-one sounds intimidating there are also other options available in many places, like group therapy, patient support groups (like the Hearing Voices Network), online therapy options, and more. #SchizoChat
I started my search by simply googling therapists and the name of the town in which I live. I’m in a largish town so this method became a little overwhelming. #SchizoChat
I am lucky to be in university—I went to university counseling. The counseling bit itself was horrible (more on that later) but they did let me have access to a big spreadsheet with all of the local professional provider options. #SchizoChat
The website Psychology Today also has a therapist finder! You can sort their recommendations by your insurance company, diagnosis, and other preferences. #SchizoChat
Unfortunately, just because you found a good-sounding therapist online does not mean you have completed the journey. Oftentimes professionals are full and can’t accept patients or have months-long waiting lists. #SchizoChat
The vast majority of professional counselors and therapists I’ve contacted did not consider themselves qualified to help a psychotic patient and turned me away. #SchizoChat
As you can imagine, being turned away from therapy over and over did not help me be any less afraid of my diagnosis! Even professionals were scared of me, how could I not be absolutely terrified? #SchizoChat
I’ve been forced to find other types of care. I talked to religious leaders, who were surprisingly helpful. I turned to the online community, especially #MentalHealth twitter. #SchizoChat
I found a therapist who told me that the voices were really angels and demons speaking to me. Not ideal but I found it more comforting than nothing. #SchizoChat
I was ultimately very lucky to find a psychologist trained to help schizo-type patients. I’ve been seeing her for a month now and it has been absolutely wonderful. But the journey here was quite a demanding process! #SchizoChat
Getting an appointment with a therapist is challenging, and therapy can be prohibitively expensive for many people. Even if you find a therapist and can afford the sessions it doesn’t mean that therapist will be a good fit for you. #SchizoChat
Therapy can be a bit like dating—you are building a relationship with someone (albeit a relatively one-sided relationship) that will rely on understanding and trust. You need to get a good “fit” or it will not work out well #SchizoChat
My psychologist right now is a great fit—I leave each session feeling a bit raw, a little challenged, but immensely hopeful and energized. #SchizoChat
Previous therapists have been a BAD fit. My recent bout with university counseling was awful—the counselor basically implied I was too ill to be in school, have my pets, be in society. It felt horrible and I left each session feeling worse #SchizoChat
Is therapy helpful for everyone? No! If it isn’t helpful for you that is okay. #SchizoChat
I’m feeling pretty good right now so there’s a part of me that wonders if it is worth the cost of therapy. But I know that if my symptoms flare up it will be good to have someone who knows my “normal”—I recommend setting up those connections now if you can! #SchizoChat
In addition to therapy/psychology/counseling, I recommend finding a good psychiatrist who can provide medical treatment if necessary. #SchizoChat
Psychiatry is a lot like psychology in that it may be hard to find a provider willing/able to treat a schizo-type patient, which can be beyond frustrating. #SchizoChat
Psychiatry, too, requires a relationship to work effectively. You need to be able to trust your psychiatrist to respond to your needs! I’ve had psychiatrists who didn’t seem to take me seriously or believe me when I described my symptoms. #SchizoChat
When you don’t have a good relationship with your psychiatrist it can feel like they are forcing treatment without your consent (this is a huge and complicated topic—for more info check out this #SchizoChat on consent to treatment)
Your psychiatrist will likely prescribe you medications to help treat your symptoms. This can be bewildering and the process of finding something that works can take a depressingly long amount of time! #SchizoChat
The drugs prescribed to schizo-type patients can be really hard to handle, may not treat your symptoms, and could even cause permanent damage. Finding the right one is an expensive process of trial-and-error. #SchizoChat
Psychiatric help is definitely not useful for everyone! It is too expensive for some patients, others don’t respond to the drugs well (or at all), still others have horrible relationships with the entire field of psychiatry in general. #SchizoChat
But the flip side of the coin also exists: I have a great relationship with my psychiatrist and we’ve built a treatment plan that I’ve found really helpful. #SchizoChat
Remember, it’s useful to build these relationships before your symptoms get “really bad.” I see my psychiatrist and my psychologist even when I’m feeling great. #SchizoChat
I recommend not only building a psychiatry and psychology care team but also building a personal care team to help you manage your symptoms (especially before they get really bad). #SchizoChat
Talking to family, friends, and coworkers about a schizo-type diagnosis can be really challenging. There’s a lot of stigma surrounding these illnesses (check out our previous #SchizoChat about it!)
The extent to which you share your diagnosis/symptoms is totally up to you. If you share it with no one, that is okay and that is your call. If you share it with everyone, that is okay and that is your call. #SchizoChat
I’ve shared my diagnosis with some of my friends, family, and coworkers. It has changed my relationship with them, but it has also prepared them to help me if I need it. #SchizoChat
Plus, again, it's scary and I need people to talk to! They may be afraid of your diagnosis but there's things that it's helpful for friends and family to know! Check our last week's #SchizoChat for more details!
It’s good to have a plan to mitigate symptoms. What might that look like? #SchizoChat
I have a basic operating plan that covers daily living. I have a general time when I take my medications, go to bed, wake up… a basic routine that I can lean on when my life feels like it is falling apart. #SchizoChat
My support network helps me. My coworkers know to check on me if I don’t check in to work, my partner helps me get out of bed each morning, etc. It keeps me productive when I’m feeling well and keeps me going when I’m not. #SchizoChat
CW: self harm
I also have a crisis operating plan. When I’m hearing self-harm voices we lock down the dangerous items in my house. I have prescribed tranquilizers in case I panic to the point of hurting myself. #SchizoChat
I also have a crisis operating plan. When I’m hearing self-harm voices we lock down the dangerous items in my house. I have prescribed tranquilizers in case I panic to the point of hurting myself. #SchizoChat
It may seem silly to plan out things as simple as brushing your teeth, but I recommend building the plans in case your symptoms flare up and you need them because trust me it is better to prevent a spiral then to try to claw your way out of one. #SchizoChat
I talk a lot about preparing before symptoms, spirals, etc. But remember—there is no guarantee your symptoms will ever get worse or that you will ever lose control! #SchizoChat
I’ve chosen to educate myself about what the disease progression can look like, though, to prepare myself in case I do start getting worse. It comforts me to think that I have plans in place. #SchizoChat
I’ve read a few books about the disease in general to help prepare me. I talk frequently about Dr. Fuller Torrey’s Surviving Schizophrenia, which I’ve found helpful, but lots of folks have given me recommendations for other great books I’ll tweet about in later #SchizoChat-s
It’s always a fine line though, educating myself enough to help me feel in control but not scaring myself! It’s something I work on weekly with my psychologist. #SchizoChat
The scariest part of my schizo-type illness is losing control. I struggle to control the voices, the delusions, the fear that my illness is going to keep me from living my life the way I want to. #SchizoChat
One thing I’ve found useful is letting go a little bit. I used to really get down on myself when I was struggling to take care of myself. I had to learn to cut myself a little slack. It’s going to be rough at times, and that is okay. #SchizoChat
I had to learn to be okay with the manifestations of the illness. It was mortifying to break down screaming at hallucinations in a crowded supermarket, but it happened. I had to come to terms with it. #SchizoChat
It takes constant practice, but in general I’m more at peace with my symptoms. I learned to forgive myself when my brain acts in ways I don’t want it to. I have no other option. #SchizoChat
I’m also working to come to terms with the idea that I will need to give myself the space to deal with my mental illness. It takes time, it takes energy. It keeps me from working as hard at my job, or keeps me from always doing what I want. #SchizoChat
There are days where dealing with my illness is a full-time job and I get nothing else done. It’s just something I have had to come to terms with. #SchizoChat
Graduate school already has a “work toward you drop” mentality. It makes it hard to convince myself to take the space I need to feel better, but I’ve learned the hard way that working to the point of burnout doesn’t make me a more productive scientist anyway. #SchizoChat
Would you continue to “push through” a broken foot, running along as if there was no problem? Then why would you try to push through the symptoms of severe mental illness, rather than getting the rest and care you need to feel better? #SchizoChat
Fun fact: I fractured my foot at work and continued to push through it, running around collecting data until the bone broke all the way and my foot was permanently damaged. So I guess it’s no wonder I do the same to my brain. #SchizoChat #GradChat #PhDChat
Another complicated part of dealing with schizo-type illnesses is dealing with other people. The stigma surrounding these illnesses can be immense and a lot to handle. It’s hard to deal with people acting afraid of you when you don’t feel scary at all. #SchizoChat
I’ve had to really work hard to put myself in other peoples’ shoes, to remember how little I knew about these illnesses before my diagnosis and cut them some slack for acting on stereotypes rather than reality. #SchizoChat
For me the stigma is the worst when it comes from friends and family. I can deal with strangers staring at me weird, but it’s so much more hurtful when my family doesn’t believe me, doesn’t trust me, or simply can’t handle my symptoms. Therapy helps. #SchizoChat
You’ll also get treated to all sorts of opinions about your illness, especially from people online if you choose to be open about it. I get attacked by anti-psychiatry folks, anti-therapy folks, people who think that mental illnesses aren’t real… it’s exhausting. #SchizoChat
Oftentimes people’s advice will be well-meaning but will feel shitty. Folks offer treatment suggests to be nice but it feels like they are instead telling you that you are experiencing symptoms because you aren’t doing something right. #SchizoChat
It is important to remember that schizo-type illnesses are just that—an illness. Like cancer or kidney disease. They’re a medical problem caused by a combination of genes and environmental factors like hormones and nutrients. #SchizoChat
Your schizo-type illness is not your fault or anyone else’s. You didn’t cause this, you didn’t fail to prevent this. It is simply biology. It may suck, but it’s simply life, like any other chronic illness. #SchizoChat
You may also meet other types of well-meaning folks. I frequently hear that the (often terrifying) hallucinations/delusions I experience are actually some sort of spiritual connection to “true reality,” or something along those lines. #SchizoChat
I’m sure this is well-meaning and I’m sure that there are people who actually believe this but (I can’t stress this enough) my hallucinations/delusions are often horrible and I sure as hell don’t want them to be real! #SchizoChat
I very frequently see my loved ones dead, see monsters, see ghosts, hear mean voices… I sincerely hope that isn’t actually reality haha #SchizoChat
So, you’ve been recently diagnosed with a schizo-type illness. Find a care team (professional and personal). Make some plans, just in case. Educate yourself but don’t overwhelm yourself! #SchizoChat
Tell as many or as few people about your diagnosis as you want. Give yourself the space to deal with your illness, even if it means cutting yourself some slack when things don’t get done. #SchizoChat
Don’t waste time/energy blaming yourself or others! Be prepared for people to be a little insensitive—therapists can help you work through hurtful comments! #SchizoChat
Your diagnosis isn’t the end of the world (even though it initially felt like it for me). Lots of us schizo-folks are doing just fine and we are here to help you every step of the way. My DMs are always open! #SchizoChat
That concludes our #SchizoChat for this week! To be honest I’m not sure when the next one will be—I’m burned out at the moment and looking forward to some relaxing holiday break. And catching up on some work!
If you have any topics you’d like to cover (or would like to host a #SchizoChat!) please DM me or comment here!
If you found any of this helpful/intriguing/informative please share! Let’s get everyone #SchizoChat-ting and #EndTheStigma!
Hey @threadreaderapp could you please unroll this thread for me?
