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4 Tips for Disclosing Your Schizoaffective Disorder

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If disclosing your schizoaffective disorder scares you, you are not alone. The stigma alone can make it feel unsafe to share your diagnosis, but in some cases, it can be better or even necessary to disclose. Here are a few tips on opening up about your schizoaffective disorder diagnosis.

1. Start disclosing with people you feel safe with.

If possible, start by disclosing to people close to you who you think would be the most supportive, whether that’s friends, co-workers, or any other person with whom you feel comfortable. For me, it was two close friends. While I wasn’t convinced they would respond well and I would have been devastated had they not been supportive, they were two of the people who I felt most strongly connected with and who had been through other life trials with me, including mental health-related ones. They were some of the only people with whom I felt I could always be honest.

2. Think about what you want to say before disclosing. 

Don’t focus too much on the exact words you want to say because if you go off script, it may throw you off and trigger more anxiety. But think about what you want the other person to understand. Maybe you feel it’s important to say something to let them know you are still the same person. Or maybe you want to ask for specific help or support or explain any past or future issues.

Be prepared to explain schizoaffective disorder to some degree. Most people aren’t familiar with it so giving the gist of it may help the other person have a better idea of what you are going through. If there are parts of your experience or this disorder you’re not ready to open up about, that’s OK. You don’t need to share everything, just what you need them to know.

3. Consider sharing some of your experiences with schizoaffective disorder. 

It is by no means your job to educate everyone you come into contact with unless you choose to do so, but sharing some of your experiences with someone you plan on disclosing your diagnosis with may help erase stigma and any stereotypes they have in their head. Most people don’t actually know much, if anything, about schizoaffective disorder. So, sharing real experiences can paint a more accurate picture, which might be different than what they thought schizoaffective disorder or psychosis entailed.

When opening up to employers and teachers, I typically keep the information I share limited and quite simple, but when it came to disclosing my diagnosis to friends, giving some detail usually helped them better understand and support me and reminded them it was me, their friend, living with this rather than a picture painted by the media.

4. Choose a moment that’s private and in a place where you feel most comfortable. 

When I told my friends, I chose a moment where we were in one of their bedrooms. It was a place where we regularly had personal conversations. It helped me relax to be in what I considered a safe space. But not everyone you disclose to will be a friend. When it comes to sharing your diagnosis with teachers or employers, it’s often helpful to do so in a private setting where you have their full attention and at a point when both your mind and theirs are calm. And if you’ve set your plans on where and when, then the moment comes and it doesn’t feel right, it’s often OK to change your mind and try again later. But this conversation doesn’t necessarily have to be planned either — you may find yourself in an unexpected moment that just feels right.

The truth is, it may never feel like the perfect moment to disclose that you have schizoaffective disorder.

No matter where, when, or how you choose to do it, there’s a good chance disclosing your schizoaffective disorder diagnosis is going to feel awkward and uncomfortable. But take a deep breath. Say what feels right at that moment, whether it’s the full story or just highlights. Understand there are some who may not respond well. But if you do get a negative response, don’t give up on telling others. Just because one person isn’t supportive doesn’t mean no one will support you.

I was absolutely terrified when I started sharing my diagnosis and there are still situations where I’m very nervous about sharing. But as frightening as it is, in some cases disclosure is necessary. You need people, especially locally, who are there for you, and you may need accommodations at work or school that require some level of disclosure to select individuals. No matter how scared you are, remember there are people out there who love you and support you no matter what. If those aren’t the people around you now, don’t give up — they’re out there. No matter who you are or what your symptoms are, you deserve support.

You can follow Katie’s journey on her blog, Not Like the Others.

Getty image by Prostock-Studio

Originally published: October 4, 2021
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