From ‘Marbles’ by Ellen Forney
One day last week at work I served a customer who had just got out of hospital after having gall stones. He was rambling on in that way that charming way old men do when they’re telling a story, and he tells me when he found out his diagnosis he said ‘but doctor, I don’t want gall stones, take them back!’
Right now, I feel the same about bipolar disorder. Not that having a mental illness is something that I ever wanted- it’s just sometimes the fact bothers me more than others. Like this weekend.
Yesterday was a nice, sunny day. I wanted to go into town to buy some things I needed (like shampoo, toothpaste, new shoes for work) and get out of the house. But I couldn’t. Because I’m not allowed to drive. Because my driving license has been revoked because I have bipolar disorder. My friends were busy or away and my sister was studying for exams and my parents had already been in town that morning and wouldn’t take me in again and public transport doesn’t exist where I live (apart from the school bus, twice a day, five days a week). So I spent the day feeling trapped and frustrated, resenting the fact that despite being out of hospital, I still don’t have my freedom back.
It probably seems trivial- lots of people my age can’t drive, many more don’t have access to a car. And really, it’s painfully middle class and first worldly of me to complain about. But I feel truly lost without my car. I hate relying on my parents to ferry me to work and back. Hate that my friends are now expected to drive out to see me or come pick me up. Hate that I have to ask to be taken somewhere, that my parents argue over who has to take me wherever it is that I need or want to go, that if they’re not around, I’ve to rely on extended family or pay for taxi’s. Hate that I can’t just hop in my car and go where I want, where I want.
I know it’s not that bad- that really, I’ve only got 6 weeks to go. One of the nurses told me about her daughter that has epilepsy and just before she reached a year seizure free (and could start driving again), she had another one. So I know that 3 months isn’t long, that it could be worse. But that didn’t really make me feel better, or any less trapped or frustrated.
Last night, my sister sat on my chair so I sat on my sister. In that very mature big sister way. And in the same way lots of siblings do. And mum came in and told me I was hurting her so I started protesting, the way you do when your parents take your siblings side in an argument, and then later on I am accused of ‘getting high’, and when I insist that I am really not, I am accused of ‘lacking insight’.
The night in between admissions when I spoke to my favourite nurse on the phone, I complained at how my parents had symptom checked the entire time we were on holiday. She agreed that it was really frustrating, and told me that once I calmed down, and once we all got to understand this illness better, they would stop.
But they haven’t, and I am finding in infuriating. I cannot laugh, or buy something I don’t need, or wind my siblings up, or be irritated about something or speak animatedly about something without being asked if I’m ‘getting high again’. If I am anything other than 5 on a scale of 1 to 10, experience anything other than ‘fine’ on the spectrum of human emotion, my parents and siblings exchange worried glances and tell me they are Concerned. And when I reassure them that I am not, ‘getting high’, and that honestly, I am fine, I am not believed. Probably because when I was unwell, I spouted ‘BUT I’M PERFECTLY FINE’ when I very clearly wasn’t. But where does that leave me? I’m kind of fighting a losing battle. I’m aware when I say ‘I’m HONESTLY, 100% fine’ in a shrill and irritated voice, I sound like I’m sick. But the only reason I’m saying it in a shrill and irritated voice is because I am both irritated at constantly being asked if I am ‘sick’ when I’m really, truly, not, and getting frustrated at the fact that there is no way I can insist I’m ok and be believed, because if I was sick, I wouldn’t be admitting it. So it’s a catch 22.
Later, mum asks me if I’ve ‘calmed down’, which irritates me further because I wasn’t ever uncalm, I was winding my sister up, like I’ve done since the day she popped out of the womb. Because that’s what big sisters do. So we go through it all again- me insisting I’m fine, her telling me I am irritable and excitable and speaking in a defensive, aggressive tone. So I try to explain where I’m coming from- that it is frustrating being questioned, my words and behaviour analysed and scrutinised, and she tells me I have to see where she’s coming from- she’s worried.
She is worried, and I get that. She is my mum so she has to be, and I have this illness that means I sometimes lose insight and everyone is looking out for me because they don’t want me to get sick again. Which is fair enough. But what isn’t fair, and what I’m finding frustrating, is that I am made to feel like I can’t laugh, can’t buy something I don’t need, can’t wind my sisters up or get excited or irritated about something, because if I do, people get Worried.
I have been sick for a third of my life. I have spent the majority of my teenage years and young adulthood unwell. I’ve grown up with this illness. And I am sick of being sick. I am sick of everything revolving around this illness, I am sick of being a constant source of worry for my family and friends, I am sick of being held back, sick of hospitals and appointments and medication, sick of being controlled by violent moods, sick sick sick of it all. So now that for the first time in a very long time I am actually quite stable, I would like to get on with it. I would like to just BE without questions being asked, without people nervously waiting for it to Come Back. Because waiting to get sick again is not enjoying the fact that currently, I’m not. And I would like to be ME me, not sick me for a while. I would like not to be a constant source of worry, and I would like it if my parents would trust me a little.
Really, in the grand scheme of Things That Suck About Having Bipolar Disorder, not being able to drive and symptom checking are probably quite minor. But I think sometimes the things that bother you the most about being unwell are the seemingly minor things. For me, not being able to drive and having my family constantly scrutinising me are reminiscent of being in hospital- of a lack of freedom and constant observation. So this weekend I’m feeling a bit sorry for myself, very frustrated, and if I could speak to my consultant, I’d very much be saying ‘but doctor, I don’t want bipolar disorder!’ Take it back, give me a new brain please!