It’s 2017 and we’ve come a long way in making sure that people with chronic illnesses can still live fulfilled lives. Yet, as I enrol on the MA program of my dreams at the school I have always dreamt of attending, I am worried sick about finances and how I will cope with the pressure of studying and commuting across London for lectures.
I have never ticked that I have a disability when filling out forms because when it asks for you to specify, it usually limits your options to learning difficulties, mobility issues or hearing/sight impairments and I technically have none of those. What I do have is a chronic illness called Polycystic Ovarian Syndrome (PCOS).
In Layman’s terms, PCOS is a disease that can be classified in two ways; a hormone imbalance which comes with a variation of symptoms such as irregular periods and cysts growing in the ovaries. PCOS affects about one in ten women in the UK but many will never even experience any symptoms at all especially if their hormones are fine and they just develop small cysts. The cysts usually disappear on their on and are only a problem if they continue to grow and or burst. The cysts are not that much of an issue for me as the hormone imbalance.
With fluctuating hormones such as oestrogen and excess testosterone, the embarrassing body hair has become a minor issue. Over the years, my condition has gone from migraines while menstruating due high levels of oestrogen, to months without periods because my body has ‘forgotten’ to tell my ovaries to release and egg. All of this has affected my life more than often I admit. While I did relatively well in my A-levels, I know I could have done better if I hadn’t been in and out of hospital six weeks to exams.
In 2015 I bled for 62 consecutive days and passed out at a train station after which I had to have surgery to remove a fibroid, a type of benign tumour, in my uterus. Fibroids are pretty common, especially amongst women of colour, but they thrive in the high levels of oestrogen that PCOS can cause. I had my surgery on September 14, two weeks to the beginning of my final year of my undergraduate degree. Thankfully, my university was very supportive but it was still a great struggle.
After graduation, I left London because I was scared I would not be able to cope with the workload at the kind of job I would need to afford to live in London. I got a job as an administrator in a school in a small town outside of London and I was pleased. Even though administration is the furthest thing from my passion for creative writing, I had to make it work. I also decided to be honest on my medical history form when I was offered the job and mentioned my condition. Human Resources (HR) and my boss assured me that they would do everything possible to help me but when I started struggling with severe PMS and anxiety attacks at work, I was shocked to find that HR was enquiring of my colleagues how much time I was spending on break as it seemed as though I was slacking.
In April, our school nurse left and I had to cover First Aid for a month before the new nurse would start work. This meant that whether I was cramping, felt nauseous or weak from heavy periods, I had to run around school whenever I was needed and four months into my work there, I stopped having time for breaks. To top it off, I developed chronic nausea and couldn’t even sneak in a cup of tea or some biscuits because I would feel sick for the rest of the day. Eventually, it got the best of me and I collapsed at work from pain and exhaustion.
While my employers were very aware of my condition and I kept my line manager in the loop of all developments in my condition, no real measures were put in place to help me feel more comfortable at work. Seven months into this job I was put on probation for taking too much time off work despite the fact that, from the admin point, my work was always conducted well – I just wasn’t always there to pick up the slack for teaching staff when they needed me to.
This was my first full time job and my experience in terms of consideration for my health was quite disappointing. Apart from often having to complete tasks that involved heavy lifting, I realised that other staff would gossip about me taking so much time off. Even though my job was technically a job for two people and had historically been done by two members of staff, I was constantly seen as a ‘princess’ for asking for concessions. These concessions were not about reducing my workload but more about allowing me adjust the way I did my job to make it easier on my health.
Now that I have left this job and am back to studying, I’m realising that financial aid doesn’t really put much emphasis on helping women who struggle with their menstrual cycle and are severely affected by it. I’m currently undergoing hormone treatment after 96 days of bleeding that won’t stop. The medicine has a horrible effect on me and I’ll probably need surgery to remove a new fibroid. Because of this, I can’t work and it really makes me wonder, why is it comes to workplaces and financial aid for disabled people, women with menstrual disorders aren’t offered more help.
There is a stigma attached to women and periods, but chronic illnesses can be debilitating and not only does this stigma need to be tackled but more provisions need to be put in place to make the lives of women who suffer these chronic illnesses easier.
Written by Adjoa Manu
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