Jane, July 1, 2019

“Something that helps one day might not help the next, and I don’t know how to tell you that without confusing you.”

1. I can’t just snap out of it or ignore it. 

This can be frustrating to hear. Sometimes I describe my (occasional) reality as having the TV and the radio on loud at the same time, while trying to have an intense conversation. You should try it sometime; but keep in mind that once you’re done, you can remove the distractions with the flick of a switch. For me, it isn’t that easy. 

2. There isn’t always a reason for a bad day. 

Yes, symptoms are often triggered by external events, like not enough sleep, or stress. But there are days when I wake up and it’s noisy in my head for no concrete reason. When you ask me to explain why, you mean well, and you want something you can point to as a trigger, but sometimes there isn’t one. It doesn’t mean my experience is any less real or hard.

3. There are two types of symptoms.

Positive symptoms add something to my life, but it’s not like winning the lottery. Sometimes I hear voices or see shadows that vanish when I look closely. Occasionally people’s faces change into something frightening, or I hear a different set of words than what’s coming out of their mouths. Negative symptoms are losses. The ability to concentrate, or motivate yourself, or get dressed. Imagine traveling somewhere that you don’t speak or read the language. Your senses are in overload trying to absorb all the unfamiliar things. Now imagine that you’re in a place you know well, but everything above applies, and suddenly nothing is familiar or safe. It. Sucks.

4. If I bail on stuff, it’s not a reflection on you. 

I am constantly at war between wanting to participate in life and wanting to run away. When things are noisy in my head, everything gets so much harder. I can hide it from you for a while, but it’s like walking in dry sand: the longer you try, the harder it gets. It’s not because you’re bad company, or that you’ve done something wrong. I’m exhausted, and maybe I don’t want to perform (because it feels like lying) but I also can’t risk telling you the truth.

5. I don’t mean to seem ungrateful or difficult. 

Something that helps one day might not help the next, and I don’t know how to tell you that without confusing you or alienating you. It is easier to either deny I’m having a bad day, or to accept whatever you’re offering without telling you it isn’t what I need today. Because you are somehow still here, offering your support, and that means so much to me. And tomorrow, or in a week, I might want that hug.

6. I do trust you, but I also want to protect you. 

Sometimes while we are talking, someone in my head is telling me that if I confide in you, one of us will get hurt, and it will be my fault. Sometimes they say that you are out to get me, or just pretending to care. On a good day, I know that you genuinely want to help, but they are very persuasive, and I want to protect you. I feel incredibly guilty a lot of the time about being ‘too hard to deal with’ or being a burden on the people that I love. When things aren’t great, I hurt, and I don’t want you to hurt too. 

7. There are no quick fixes. 

Medication is a key part of treatment - but drugs have side effects and there are a lot of different types. I don’t like taking meds, but I have accepted that I need them. Therapy is another key factor - but you have to find the right person (or team) for you.  It’s sort of like dating - you wouldn’t go on multiple dates with someone without feeling some kind of connection developing. Unfortunately, there is no Tinder for finding a psychiatrist, and they barely ever buy you a drink before you take your metaphorical clothes off. 

8. Schizophrenia is for life, but it doesn’t have to be a life sentence. 

It’s been three years now since I was diagnosed. I have learned a lot of things about myself and I have some absolutely amazing people in my corner. The last couple of weeks have been difficult. A friend pointed out to me today that last year, I would have probably been admitted by now. Do not pass go, do not collect $200. Instead I am working through it, even though that means hard conversations and tough decisions. Yesterday, I sat down thinking I wanted to write about what it feels like to be unwell, and I couldn’t organize my thoughts. Today I can. Whatever tomorrow brings... bring it on.

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