I’m not looking for sympathy and pity even less so. This is just my story, which will no doubt resonate with many people.
I began working after attaining my fourth degree, being offered a full-time internship at The Star, which I had to turn down because R3 500 per month is peanuts when you’re on medication that costs more than that monthly. I was already ill then. I didn’t need the extra strain on my pocket and my parents. I was told by the member of Wits Journalism Department who had secured the Independent Newspapers bursary for me the year before that I just need to suck it up or chose a different profession.
So in and out of a few part-time jobs I went. A three-month contract here, a two-month contract there. A year-long contract at a place where my line manager would use my health against me in meetings. Stealing my ideas that she would shoot down in small staff meetings and offering them as hers in the board meetings saying that I’m “too depro” to think of anything worthwhile for the brand. The only reason they knew about my mental health issues is that they bullied me into telling them about the cost of my medical aid in an HR meeting. I was young and scared I would get fired otherwise.
Fast-forward a few years later, me in a great position at a full-time job for four or so years. My head began to act up. Severe reactions to medication made my head fuzzy and I couldn’t concentrate so I took a month off and admitted myself into a hospital. I came back to a full-on attack from the higher-ups that I wasn’t pulling my weight and that they can’t have one of their senior members of staff “pulling stunts like this”. As if they were even paying me a senior salary *eye roll*. My next year-end review came with threes and twos when I was the only one on that team doing any substantial work. I was bullied into quitting. As I was facing bigger problems with my body saying no to meds I desperately needed, I didn’t have the energy to protest.
But then it got worse even at my next job. I asked for concessions to be made and it was my deputy editor – not even my boss – who said that working from home just one day a week was impossible and that they’ve already been kind enough to give me regular work hours and never asked me to work on weekends or after hours (they had, and made me feel like shit when I said no). When I applied for a position on another team (where the work was more in line with what I wanted to do) that editor said no because I don’t play by rules as is with hours and shifts. Of course, she was tight with my deputy editor. I still maintain, entertainment journalism is not so much about who is best for the job; it’s about who is the best-dressed. My dear friend, Pearl Boshomane Tsotetsi, explains that concept beautifully here.
By that time, my brain was shorting out at least twice a day. I was having lapses in memory regularly and my husband was on the verge of leaving me, even though we had just bought a house together. Then I found a job I thought I’d be able to stay. The first day in the office I set my bags down opposite a man who is on his phone, back turned to me. He spins his chair around. He looks almost identical to the man who raped me in the early 1990s. I had to leave. I couldn’t handle the heart palpitations and utter terror every day. Even his voice was similar. I couldn’t concentrate as I relived flashbacks to the trauma every single day. Thus began my long struggle with short-term contracts and utter bullshit, living every month closer to poverty than to being comfortable.
I went between part-time teaching and writing jobs for three years with constant stomach pains and depression, bipolar, and memory issues getting worse and worse. Losing time. Going from endocrinologist to gynea to figure out what was causing the pain and the hormone imbalances. All of them told me “just lose weight”. All the while my work was slipping. I missed a lecture because I lost time. After not being available to edit a story (on a public holiday) due to not being able to see a thing in front of me, an editor told me, “That’s no excuse. Keep your crazy at home.”
Finally, four years after the physical pain began, I was diagnosed with having a 4.5kg tumour in my abdomen. It was wrapped around my uterus and had totally engulfed my right ovary, causing a hormone imbalance of ridiculous proportions. My pancreas had stopped producing insulin. The depression was so deep, I could dig my way to China had I followed it all the way down. All my senses were pretty fucked. So I took some time off work to have it removed. I worked while in the hospital. But not two days after the operation, I get a call saying they’re not renewing my contract for “lack of delivery”. I was badass at that job. When I say badass, I mean I was taking names. By then, I had not just lost an ovary but a baby too. A little girl. I was broken and devastated. I couldn’t fight. My husband had left for Sweden for his studies and the only person who was supporting me in any way back then left without a word.
At least the pain was gone.
After having a job offer retracted by Monash University (according to the HR manager, “We can’t make concessions for your mental health”), I was left with nothing but the side-effects of mountains of medication and a worsening mental state. Turns out, losing an ovary can really fuck you up. One of the things they don’t tell you is when you have your ovaries removed before menopause, you run a heightened risk of developing dementia or other mental problems later in life and it can even exacerbate existing mental health conditions. Yes, really. That’s because your mental health is intrinsically linked to your hormone balance.
I started hearing voices and seeing things for the first time since my childhood. The lapses in memory became more frequent. And then something emerged that I thought had not happened since I was a kid. I started dissociating. To cope with the horror of being abused throughout my early childhood, my mind used a tactic that isn’t all that uncommon – creating new identities for me to detach from the pain. The abuse was so extreme and so persistent, my brain went “NOPE!” And so Emily, Ria, and a few others entered my head and haven’t left since I was little.
Aside: My family used to pick on the fact that I once pushed my imaginary friend off a cliff while on a hike in the Drakensberg. It’s a bone of contention but it’s a quirky story for them so I let them have that. But it’s a painful memory the real reasons for which I have kept a secret. I had to physically detach myself from this person who wasn’t me who was living my life and making decisions for me. I thought of jumping that day. I didn’t. So I pushed her off Beacon Buttress. She hasn’t returned. Thank fuck.
I began doing and saying things I would not have and not remembering that I did – because it was other people doing and saying it. Turns out it had been happening on and off for years without my realising I had switched. It damaged relationships with friends and at work. I didn’t realise I had resigned from one of my freelance jobs until I came home and saw an email confirmation of my resignation. I started taking walks at night. I began chatting to strangers online. I didn’t know where I was half the time. I wasn’t safe in my own head.
Of late, I have been doing a lot better in terms of the dissociation, memory lapses, and depressive episodes. There’s not been a manic episode for a few years now. I still get low and my long-term memory is diminishing slowly. I have forgotten how to play the piano. I’m forgetting words on a regular basis. I forget people and songs. I forget full days and where I am sometimes. It still doesn’t change the fact that a prospective employer reading this will pass it off as “that candidate is crazy and a liability” or anyone else saying “she’s lying for attention” or “she’s making excuses for being irresponsible in her work”. Thing is, I am yet to miss a deadline. Every article I have ever written has been published with nothing but praise. All my activism has yielded results and sometimes changed lives. My students have only ever complained about me when I’ve failed them in an assignment or test. I say this with no ego or agenda.
This year, worldwide lockdowns meant everyone was working from home. I had asked for these kinds of concessions years ago but all of a sudden, the concessions I had asked for at the start are being implemented as a matter of urgency. It’s not that these companies couldn’t do what I requested. They just didn’t want to. But now when the able-bodied are affected, it’s not only possible – it’s necessary. Us disabled folk see you and we see where your “matters of urgency” priorities lie.
People with disabilities already have it rough. We are fighting to exist in a world designed for able-bodied and neurotypical people. We have to find workarounds, adapt, and hide in order to make living day-to-day a little less distressing and to avoid run-ins with those who don’t understand or actively discriminate. The energy it takes for me to get through one hour may be another person’s full day. For me to work just one full eight-hour day is to compromise having a life for the rest of the week, responding to messages, speaking with my family, and going for walks or to the shops. This year being 2020 also means added pressure. So many neurotypical people are only now beginning to come to grips what the everyday struggle is like for people with depression, anxiety, and mania – and their battles with all of this is only scratching the surface of how we live every single day.
I don’t need pity. That doesn’t help. I can do my own shit. If I need help, I will ask for it. What I do need is for people to recognise:
1. Mental health issues exist and they are damaging;
2. These issues manifest as physical exhaustion or pain;
3. We need concessions made for us sometimes;
4. We. Are. Not. Faking.
5. Compassion and empathy go a long way in creating a healthy space for people with illness to be in; and
6. By not being accommodating, you’re not discriminating but you are one cog in the wheel of a potentially ruined life.