Patriarchy Could Have Killed Me: My Journey with Invisible Illness as a Woman and Moving Forward

Today, I was vacuuming my floor and I felt my heart race.

I thought it was back.

And for a moment, I was ill again and trapped in a cycle of anxiety and suffering.

But it wasn’t it.

It was just my heart beating from intensely vacuuming my room. Thankfully, my world did not fall apart this time.

What “it” is, is hard to explain.

In medical terms, I had what is known as atrioventricular nodal reentrant tachycardia which is a type of Supraventricular Tachycardia, a heart disease.

In layman’s terms, the disease meant that I had an extra electrical connection in my heart which caused my heart to go from 80 bpm to 270 bpm without cause or warning.

But no textbook can translate how this disease brought me to a point where I did not want to live anymore.

It killed friendships, relationships, my potential to be funny and intelligent, my goofiness, my happiness and most importantly, my ability to love myself.

My battle with this disease began around the start of secondary school.

I was in Homesense shopping with my mum, brother, and his friend when I stubbed my toe on a decadent chest-of-drawers.

I remember shouting ‘ow’ or something (this was pre-swearing Alisha) and then proceeded to have a nosebleed.

To avoid messing up the floor, I ran outside. Up until this very point, my life was relatively normal.

At the time, I was being badly bullied at school for my ginger hair and the fact that I spent my pocket money on stationery rather than anything that was cool in 2008- nothing really out of the ordinary.

But then something horrific happened.

I felt like I was choking and like I was having what seemed like a heart attack. I had seen many heart attacks on tv soaps and this looked exactly like it.

I sprinted to my mum’s car screaming that I was going to die. I asked my mum to call my nanna to tell her that I love her, and I remember that could not breathe regularly after that.

My mum was in shock. But she knew that I was going through a lot in school so she diagnosed me right then and there, she said “you are having a panic attack”.

This is did not reassure me as during the whole journey home I felt like I was seeing the world for the very last time.

Around 6 hours later, the feeling went away.

I was exhausted, but I was back.

I thought it must have been just a bad panic attack.

I told the doctor about my “panic attack” and he told me to smile and love my life because I had everything to be happy about.

He told me to relax and maybe go to therapy if things continued- and they did continue.

I soon fell into a state of depression.

I recall being in class not listening to a word and thinking about my death and how the students would pretend they liked me and cry and write on a giant card with my freckled face on it. And the “panic attack” came back again.

I was sent to the medical room but someone was in there with a badly grazed knee so I was told to “sit down and shut up” by the secretary.

I cried and cried, but they treated me like I was crazy and lying to miss the class.

Weeks passed consisting of the same things.

Before I knew it, it was time to study for my GCSEs.

As no one believed that my heart was not right, I believed that I was in fact, crazy.

It was clear that I was not going to do well in these exams.

No surprise, I did not do well in the exams. I received a few A*s but nothing compared to what I was capable of doing.

My school were disappointed, my parents didn’t know any different, but most importantly, I was heartbroken.

My A levels followed and the attacks continued.

I remember being in English class when my teacher was talking about the coursework paper, and my heart kicked in so I ran out of class.

After hours on the medical bed, my teacher greeted me and laughed, “oh Alisha, you don’t have to worry so much about this paper.” “I wasn’t, sir”, I thought.

Then University planning came along. I wasn’t considered one of the bright kids anymore so I was excluded from my school’s elite group.

And yes, that is what it was actually called. The horror.

So, I was left to sort myself out with no knowledge of universities or what on earth I wanted to do. I chose English.

I was told not to choose a Russell Group university because of my mental health, so I looked elsewhere.

My dad told me about Keele because he saw it mentioned on University Challenge sometime ago. As it seemed to have lots of trees and squirrels, I went for it and applied.

Not long after, Keele saved me with an unconditional offer.

They wanted me when I didn’t think anyone did, and so, I accepted Keele unconditionally.

But this did not stop me from trying to do well in my exams. I had something to prove to my school and bullies so I sat exams with my heart racing and fought every bit of pain away.

So much so that I was one of three highest achievers in my sixth form.

I was not the loser I thought I was, and the school suddenly loved me for one blissful morning.

I left for Keele in 2015, still having “panic attacks” and therapy.

I was terrified to live away from home. I had an attack soon enough and called for help.

I was taken to A&E and sat there for 7 hours with people looking after me that I had only just met.

By the time they checked my heart, the feeling had gone. I was given Valium and sent home, delirious and exhausted.

Then I had more, and more, and more attacks. More Valium, more therapy, more “it’s all in your head”, more “uni is not for you, quit”, more inconsistent grades, and more suicidal thoughts.

I took up German again.

I messed up my German GCSE a few years back because I had an attack in the exam, so I promised myself that I would learn it in university.

I worked as hard as I could, and I was accepted onto a German summer school programme- my absolute dream.

I travelled there and had an attack on the plane, and went onto have attacks every 10 minutes that I was in Germany.

I needed to leave, but I had no one to rescue me out of the situation. As my boyfriend so happened to be in Poland at the time, I decided to travel alone from Hamburg to Warsaw on a 10 hour train with basic German language skills and knowledge of the Polish swear words.

I had attack, after attack, after attack.

The carriages had no plug sockets so I was phone-less on a train in the middle of rural Poland having these attacks.

But I survived and arrived in safe hands.

When I arrived back in Wales, I asked my doctor about the weakness I was having on one side of my body and stroke-like symptoms I was feeling.

I went for a CT scan and all was clear- I had hemiplegic migraines. Terrifying things, but safe nonetheless.

Despite all of this going on in the Summer, I made it to third year.

I remember walking back from a seminar and my hands stopped working properly. I thought: stroke.

I called security, asked for an ambulance and was taken to A&E.

I waited for 2 hours. Once they said my name, I got up and my “panic attack” began.

I reassured the shocked nurses that I was having a panic attack.

However, they could not do a reading of my heart as it was too fast. One of the nurses shouted “get her to resus” and my life was like a horror movie for the next 8 hours.

In resuscitation, my heart was at 268 bpm. Unsafe, and at risk of going into cardiac arrest. I was terrified.

Nothing non-invasive worked so they had to administer a drug called Adenosine which would reset my heart’s rhythm.

The sensation of the drug was horrendous. I felt like I was dying. My heart slowed down, my vision was vignetted, my breathing stopped, and the blood around my body flushed.

Questions filled my head. How was I going to survive this? How will my boyfriend cope if I die? Will anyone care? My parents will be heartbroken etc.

After 8 hours, my heart was back to normal.

The doctors told me that I was not crazy, but that I had a type of heart disease.

After years of being laughed at, accused of lying and believing that I was imagining the symptoms.

It was not in my head after all, it was in my heart.

As soon as I returned to uni, I told everyone I knew that I was ill, mainly because I thought I could die.

People were lovely with me, but I felt so outside of everything.

I could not chat to people about new films or gossip and pretend like I was one of them.

I was not human anymore.

I saw the precariousness of my life and knew that the attack could re-occur at any moment.

I began to eradicate anything that caused an attack:

 

  • Chocolate caused an attack
  • Laughing caused an attack
  • Crying caused an attack
  • Exercise caused an attack
  • Drinking fizzy drinks caused an attack
  • Drinking juice caused an attack
  • Getting my hair done in a salon caused an attack
  • Eating meals caused an attack
  • Speaking in class caused an attack
  • Reading books caused an attack
  • Leaving the house caused an attack…

My life soon became no life at all.

The medication was torture and slowed my heart down so much so that I could not sit up in bed.

After a few weeks, I said yes to the operation to fix the condition, and I had no choice but to go for it.

At the time, I was dangerously underweight and suicidal- if I wanted to have a chance at life, I had to get the operation done.

In October 2018, I prepped for the operation.

I had just started my MA English course weeks before, and then soon enough I was in hospital signing a paper that included ‘in the event of your death’.

This was, of course, not ideal.

In my mind, I had two options: end my life or start my life.

And thankfully, my mind wanted to choose the latter.

I went into theatre and had the operation (awake btw as that’s the only way to trigger the attack), and they burned a tiny tiny tiny piece of my heart that was ruining my life.

I felt them burning me even though I was so drugged up that I was seeing Persian carpet patterns on the cardiologist’s face.

I remember smiling and reflecting on my life and saying to the cardiologist: “you’ve found it haven’t you?”.

The two hours flew by and I left the theatre. I was told that from what they can tell, it was a success.

I did it.

Post-op, I went straight back into lessons as I wanted to finally live my life and work on improving myself now that I had the chance.

I danced to all the Kylie Minogue hits that I never got to dance to over all those years.

I went to Sophia’s talk on her MA dissertation (something I would have never done as I was always too scared that people would see me have an attack).

I went on the Waltzers fairground ride with my friends and loved every second of it.

I ate chocolate and ordered tonnes of food. I got my attitude back, and argued with Tories online.

I WAS REVIVED!

But the high began to wear away.

The operation fixed my heart, but not my mind – and it certainly did not erase nearly 10 years of trauma.

I was having flashbacks of the operation, my time in resuscitation, the times people shouted at me and told me I was being dramatic etc.

I had and have ptsd.

Even today, I am obsessed with my pulse, my bodily sensations, and my health in general.

I am yet to remove the pill packet out of my phone case. The doctors may have killed the disease but its ghost – if you will –  lives on in my body.

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But amazingly, things have changed for the better whether I see it some days or not.

I am not void of hope like I used to be. I know that I am fierce and powerful when I need to be.

I know that I may have a real-life fairytale story to tell one day and I cannot wait to live through the very much overdue good bits.

After some research into the disease, I found out that my misdiagnosis was not uncommon.

In a medical journal article on ‘Supraventricular Tachycardia and the Struggle to be Believed’ by Kathryn A. Wood et al., they wrote that:

Researchers have noted that the symptoms commonly reported by patients with SVT mimic other conditions and are often mistaken for anxiety attacks or panic disorders, especially in women. (Wood et al. 2007: 294)

I want to pay particular attention to the fact that WOMEN are most commonly misdiagnosed.

The article goes on to examine real accounts of SVT in women and their experiences with not being believed.

From their observations and interviews with SVT sufferers, they firstly address that: ‘[b]eing disbelieved was interpreted by patients as being seen as untrustworthy, mentally unstable, invisible, or a hypochondriac.

Disbelief also discounted or minimized the significance of the patients’ symptoms and illness’ (300-301) – this, of course, echoes my experience.

I was told that I needed cognitive behavioural therapy as opposed to a heart scan, and the quotations from other female SVT sufferers revealed similar experiences.

Females in the study described their experiences, I quote them in full:

“I just felt like none of the doctors believed me. I think they thought I was making it up because they can’t see it or get it on an EKG. They gave me Valium or Xanax and sent me home.” (301)

“[The Doctor] told me that I was just too stressed out, and that I should stop working and concentrate on being a good wife and mother. Then he gave me a prescription for Ativan to help me relax. I did everything he said and still had that fast heartbeat.” (301)

“They did all sorts of tests … but found nothing. I think they thought I was making it up. I thought about it a lot. Was I really crazy? Was this all in my head? Was I just thinking I had a fast heart rhythm?” (304)

“I think my friends, especially my husband, may have thought that this was all in my head. My husband told me later that he had wondered if I was losing my mind, since the doctors could never find anything wrong.” (304)

I was astounded by these findings.

Oddly enough, not long after I discovered this article, my mother started to present SVT-like symptoms.

Due to this article, I did not take any chances and called an ambulance.

Turns out that my mother has been suffering with supraventricular tachycardia as well as myself, and her case has only been taken seriously because I knew what to look for and what to say to the doctors.

My worry is, what about the women who are in similar positions like this – not just specifically with heart disease – but with illnesses and diseases that are still not being taken seriously by doctors?

I am yet to know the answer to that, but what I can say is this:

If you feel unwell and are suffering:

  1. Do not settle with one doctor’s opinion.
  2. Keep an in depth diary of your symptoms to present to your GP.
  3. If you do suspect that you have a particular condition, bring it up in conversation with your GP.
  4. Ask someone who is aware of your symptoms and how much you are suffering, to come into your appointment with you. Sadly I was taken more seriously when I brought others with me to back me up.

Of course, I am not alone in this experience as a woman.

I believe that our stories can make great changes and help so many other women, so please, let’s get a conversation going about misdiagnosis and sexism in health care.

References

Wood, K. A., Wiener, C. L., & Kayser-Jones, J. (2007). ‘Supraventricular tachycardia and the struggle to be believed.’ European journal of cardiovascular nursing : journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology, 6(4), 293-302.

Suggested Reading on Women and misdiagnosis/underdiagnosis in healthcare

Gender Stereotypes in Pain Diagnosis: https://journalofethics.ama-assn.org/sites/journalofethics.ama-assn.org/files/2018-06/ccas2-0807.pdf

Women and Pain Disparities in Experience and Treatment:

https://www.health.harvard.edu/blog/women-and-pain-disparities-in-experience-and-treatment-2017100912562

The Gender Gap in Pain:

https://www.nytimes.com/2013/03/17/opinion/sunday/women-and-the-treatment-of-pain.html

 

The Autism Rights Movement-the Underrated Movement of the 21st Century

In the midst of human rights movements, one has gone forgotten and ignored by the mass media: the autism rights movement, also known as the neurodiverse rights movement.

Approximately 1% of the UK population is on the autistic spectrum, yet it is only this decade that significant autism rights movements and groups, as opposed to advocacy groups that may not properly take into account the wishes of autistic people themselves (as opposed to the wishes of their families, not all of whom fairly consult autistic people), have developed.

For nearly two years, January 2017 to October 2018, I was secretary of the most prominent autism rights organisation, Autistic UK, which has helped organise such events as Autistic Pride around the country and it calls for acceptance, not merely awareness, of neurodiversity: http://autisticuk.org/

How does it connect with feminism, you ask?

Although the ratio of women: men diagnosed as having an autistic spectrum condition (ASC) is relatively equal, fewer women get recognised as autistic because of the different ways society expects from men and women in terms of socialising and the more subtle social skills of women, and also because of a bias in research about autism towards men and boys.

There is also an important social justice dimension: the unemployment rate for autistic people, men and women, exceeds 80 per cent in the UK, and support for autistic adults wanting to live independently and live the same lives as those who are not autistic is scarce and often does not understand their rights and needs.

Autistic mothers, whether or not their children are autistic, face considerable challenges in family life, as noted by Lana Grant in her book From Here to Maternity.

In the last year, the activism of writer and autistic mother of six Emma Dalmayne, along with her friend Fiona O’Leary in Ireland (also an autistic mother), has been crucial to ensure the autism rights movement can face down challenges from those wanting to harm autistic people, such as those who market false and dangerous “cures” for autistic people.

This is a movement we truly need for the 21st century to be as inclusive and accepting as it sounds, especially for autistic women whose voices often go unheard and who still find it difficult to get a diagnosis.

Many men and boys are diagnosed in childhood, whilst a lot of women and girls have to wait until adulthood for an autism diagnosis.

You can’t ride a bike…You’re a girl!

“You can’t ride a bike, because you’re a girl”

A sentence that made a five year old girl become a feminist, the notion that you cannot or should not want to do something due to gender was absurd to her even then.

Natalie Bennett has gone on to do some remarkable things, and she came to speak to us at Keele about some of them.

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Natalie’s first degree was in Agricultural Science, which meant that when she would be the only politician with a background in science in meetings about science.

She thinks we need more scientists in politics.

She has also worked as a journalist where she would often write about things from a feminist perspective.

She was the leader of the Green Party 2012-2016 and she was the first woman, in British political history to take over the leadership of a party from another woman, Caroline Lucas.

It took until 2012 for that to happen.

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Westminster is full of memorials to dead white men. 

Natalie told us a story, to illustrate how the Houses of Parliament were not designed to accommodate women MPs.

In 2010, a young MP had a baby, and in parliament, when voting the rule is that an MP has to walk through the doors to vote, but only MPs are allowed to do this.

So when a woman, who had a baby with her, needed to vote she had to quickly pass her baby to the nearest MP and walk through to be counted.

This year is the anniversary of both women’s vote and women being allowed to stand

Suffrage a hundred years ago was a strange thing.

To vote you had to be a woman who was over 30 years of age with property, this was an attempt to prevent an imbalance of women to men following war.

However women over the age of 21 were able to stand to be an MP – this wasn’t considered to be an issue because they never thought female MPs would outweigh male MPs.

As of 2018 we currently have parliament at 32% female MPs.

If we continue at the pace we are at now, 15 year old girls will see a 50:50 Parliament when they are in their 80s.

Natalie asked the room, do we think parliament is a meritocracy?

Surely, we can do better surely than the people in government at the moment!

A Government needs to be representative of the people.

https://5050parliament.co.uk/askhertostand/

Period positivity and period poverty

Natalie told the room about a massive debate in 2015 where David Cameron was very uncomfortable talking about period poverty due to its relevance to female anatomy and period stigma.

Three years on politicians are talking openly about it, and talking positively about periods.

This means it is becoming easier to talk about period poverty and campaign to end it.

Where are the Women?

Natalie spoke to the room about tackling the myth that there are not enough qualified women to be in leadership positions:

In Norway, a law was passed to have 40% of boards be women. If this wasn’t done, the company would be de-registered.

There was a five year period to allow companies to do this and yet some companies still only did this hours before the deadline.

Many companies used the narrative that qualified women couldn’t be found.

When a study was conducted afterwards, looking at qualifications of women versus men on the boards, the findings showed that women held higher qualifications than the men, and were more qualified for the board positions.

So there are plenty of women and if this door can be opened, it opens the door to other forms of diversity other than gender.

How do we get women into leadership positions and politics?

#AskHerToStand you have to ask multiple times for a woman to stand as a political candidate.

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Within the Green Party if there are no women on a short-list – they re-open the position and actively promote to find women to stand.

In 2015 Hackney’s female Green politician was found in this manner.

Patronising, Obnoxious and Unapproachable (Man at Keele, 2018)

Sophia (co-founder of WOKE, KPA Equality and Diversity Officer and co-author of this post) was lucky enough to be called all three of these in April 2018.

Natalie Bennett spoke about the gendered double standards women are held to and the negative labels given to women for acting in the same way a man would in a position of power.

The first time Natalie Bennett went on question time, she was reserved due to the branding of Caroline Lucas as a woman who “always interrupted”, consequently she didn’t have much time to voice her opinion.

Therefore, the second time she went on question time, she “ploughed through” to be heard.

This is a real problem for women, due to the negative stereotypes of “women always talk”, or the idea that they have nothing important to say.

Society has ingrained this within us all, and it will take a lot to undo that within society as a whole – but it’s about baby steps, it’s about empowering women, and encouraging them to have a voice.

You are NOT alone

It is harder to stand as a woman. Don’t do it alone.

The Green Party always has gender balance rules, if there is a lack of candidates the short-lists will be reopened, an example of this Natalie talked about was when all the women from the London Assembly List when to the pub together and signed each others nominations, it was a moment of pure support, women empowering and supporting women, and it resulted in 7 women and 4 men being put on the list.

Natalie described herself as a believer in quota systems; because unless those systems are implemented you have to keep fighting the same battles.

There is a real necessity for building in rules in order to put each battle behind you in order to power forward.

Understand that politics is something we have to DO otherwise it is done to us

Natalie stressed that people have been doing politics to us for so many years

Now it is time to campaign, empower, and make a difference. Each small step can lead to everyone feeling like the CAN make a difference

Political change doesn’t happen because the top GIVES it, it happens because the bottom TAKES it

Three things to take away:

1) Don’t be alone – build networks of support

2) Take every opportunity to gain experience – it will get easier, and be kind to yourself

3) People aren’t going to remember the small details, like stumbling over a word, the world is more forgiving than you think

 

This write up is by Yasmin Benjelloun and Sophia Taha

 

Time to Do Better

A quick Saturday morning of research has thrown up some interesting facts and figures:

2016

When looking at the data from the KeeleSU Elections in 2016 there were 47 candidates total.

Of that total 78.7 % identified their ethnicity as white. When you compare that to Keele’s statistics on all students, the student body, was 65.8% white.

So in percentage terms, the white student populace is over-represented in running for positions of power on campus.

I also found that whilst 61.7% of candidates in the SU elections identified themselves as male, the campus wide demographic showed that only 41% of all students on campus were male.

(Head to here to see the full report on the student demographic at Keele that year)

2017

When looking at the data from the KeeleSU Elections in 2017 there were 43 candidates in total.

70.45% of candidates that ran identified themselves as white compared to a campus demographic of 64.8% white students.

61.3% of candidates that ran, identified themselves as male, but campus wide the demographic data meant that 41.4% of all students were male.

Head here to see the full report on the student demographic at Keele that year

There is a disproportionate number of men running for and holding positions of power on campus.

It is not representative of the student body.

I don’t currently have access to the data to do the same work for KPA positions, but it is significantly worse if you consider the number of male postgraduates that have held the KPA positions versus the number of female postgraduates we have in total.

(This data is from 2015/16 as it was available it is unlikely that there are  huge fluctuations in gender balance year on year):

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It’s time to do better.

After just a few months of work Women of Keele Educate have ensured a higher number of women and non-binary people at Keele have nominated themselves in the upcoming by-elections.

Take the time to read the manifestos of some fantastic candidates when you see them appear in the next few weeks.

Take the time to vote.

Take the time to ensure that you are accurately represented.

If you need any help or would like to join us get in contact

W.o.K.E Two Weeks (ish) In

Read on for a blog post by Sophia Hayat Taha, co-founder of W.o.K.E

Just over two weeks ago we started the wheels in motion for the W.o.K.E project. 

We have speakers lined up, T-shirts available, a fabulous website (if I do say so myself), direction for writers, writers coming forward, a visible presence on social media which is growing quickly, and people talking about us, coming forward to work together.  Basically we are about to get some amazing changes at Keele actively happening.

It is awesome. It is scary. It is empowering. Clearly we all want change.

What we don’t have yet is our full collection of champions, we are sorely missing more people of colour, trans voices and non-binary voices.

We are lucky enough to have some champions for our mental health based volunteer roles and some faith W.o.K.E champions in the pipeline too (watch this space!).

The missing champion roles scare me, and yes I know we are in the middle of summer, and only two weeks in, but patience has never been a strong point of mine.

I am in a bit of a cycle of wondering what I can do to make the roles more appealing and keep people safe and supported. Please do get in touch with concerns or suggestions.

We want to empower everyone who is usually ignored and kept down by multiple structural oppressions.

After London Pride being hijacked by a problematic group of anti-trans voices we posted our support for our trans sisters and brothers on Instagram and twitter.

We lost a few followers,  had to report and delete comments, and block someone. We will continue to do this every time we see bigotry. We have our safe space rules and we will continue to update and improve on them so that everyone can participate.

W.o.K.E is an intersectional movement. If that troubles you, we have reading lists that will be live soon, we suggest you educate yourself.

Challenge your privileges and have a long think about why you think you can oppress someone else. 

We have many opportunities to learn over the next year, with workshops coming to Keele, external workshops being signposted and travel arranged for groups that want to go (watch this space), conferences, reading lists, activities in informal settings, and more formal speaker sessions.

This is a long journey that we all need to take. None of us is free from our own privileges. A few of mine are that I am a cis, white-passing, straight-passing woman. We all have our own oppressions and struggles. We can all learn. We can all do better.

Over the year we have workshops challenging white feminism and the white supremacy underlying white tears. We have workshops that are specifically for men to learn about intersectional feminism. We have workshops tackling how to be a better feminist in practice instead of just in words. We have practical help for those that want to put themselves forward when nominations open for elected positions on campus. We have well-being activities, collaborations with the careers services coming up and cooperation with Keele’s decolonise the curriculum project.

This year is going to be incredible.

I am so excited. I am so scared, but I hope that you will feel empowered.

In solidarity

Sophia