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

 

Review: Amy Vreeke: The Year My Vagina Tried to Kill Me

In total seven women from Keele went to see the fantastic Amy Vreeke’s show. Two at Friday’s show and five of us on the Saturday.

It was bloody fantastic (pun intended)

The one-woman show by stand-up comedian and theatre maker Amy Vreeke was absolutely brilliant and had the audience roaring with laughter.

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Punctuating great parts of comedy where Amy relived failed one-night stands, pants ruined, and calculated that she spent £7,500 extra on maintaining her vulva instead of a second hand Volvo she could have had for the same price,  the show also had more serious, emotive parts exploring misdiagnosis, painful sex, the person she was as she tried to handle it all.

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She was diagnosed with endometriosis in 2016 but it took 10 years of her presenting with many symptoms to many different medical professionals.

It took judgemental looks and suggestions that her lifestyle choices were less than ideal.

It took her concerns being ignored and her voice being silenced.

This show is a must see, follow her career, she is a talented lady.

Go and understand more about a disease that affects 1 in 10 women in the U.K. and do it in a way that has the entire audience laughing and learning together.

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Read on for some reviews by a few of the women of Keele who also went.

Phuong Thanh Bui: I have never had a chance to watch such an amazing show ‘The year my vagina tried to kill me’ by a talented actress Amy Vreeke.

This show was the combination of art, comedy, gender equality and women hygiene, and it was highly inspiring for me.

The idea to normalize the natural behaviour of women that society cannot talk about that easily while it is part of women nature and it is beneficial for women was highly appreciated for me and I think this show was a good introduction to make this goal a reality.

Sarah Briggs: Amy’s show explored the frustrations and misinformation around endometriosis with a refreshing frankness laced with skeptical humour that was effective at highlighting that sufferers are not alone, whilst raising the crucial and unacceptable truth that more conversations around chronic health conditions are needed to combat the misinformation that is so prevalent.

Amy’s wit and energy certainly achieved her objective to make a difference to people, whether as women affected by endometriosis or as friends, partners, or relatives in a way that a bathbomb and chocolate just can’t.

It was refreshing to laugh with others with tears in my eyes instead of feel like crying with frustration over a bowl of cereal…