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

 

How to make an emergency self-care box 🌻

Life is hard.

While we may be working like robots and juggling all that is thrown at us, we must to stop and breathe every once and a while.

Some of us are suffering in silence and because of that, our suffering, strengths, battles, hard-work and resilience go unseen and sometimes uncredited.

The topic for this month at W.O.K.E is the following:

“November 2018: Welcoming writing around the topics of challenges faced & visibility of Trans and Non-Binary people; anti-bullying and workplace bullying; unseen, unvalued & unpaid labour; carers and the pressures they face” (W.O.K.E, 2018)

The one thing which unites these topics is invisibility.

Not being acknowledged or appreciated can be detrimental to our mental health and in turn, we can forget to love ourselves, care for ourselves and take a moment to reward ourselves for what we know that we have achieved.

As this is often the case, I have created a step-by-step guide to create an affordable emergency self-care box for either yourself or for anyone in your life that you think is in need of some T.L.C. and recognition!

 

After all, WE ARE ALL WORTHY OF SELF-LOVE AND APPRECIATION.

 

(Disclaimer: While I have tried my best to find the cheapest way to create a self-care box, I understand that not all of us have money to spare. So if you do not, I suggest you write a letter to remind them of their achievements, their strength and their worth! You can can also do this to yourself as a reminder to look after and appreciate yourself even when you are running out of self-belief)

 

***

 

So here’s how I made my self-care box:

YOU WILL NEED:

  • A box (or a spare cardboard box that you can wrap up with old wrapping paper and maybe decorate)
  • Small candle/reed diffuser
  • Origami paper
  • Origami instructions
  • Paper of any kind
  • Pen
  • Very small plant
  • Sticky note
  • Sheet mask/face mask

CREATE (AND DECORATE THE BOX)

To do this you can either buy a box from discount stores like Poundland, Home Bargains or Card Outlet for £1 or less.

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Or you can use a cardboard box and cover it with old wrapping paper!!!

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In order to make things easier for you to make your own self-care box, I have split the following sections into 4 self-care objectives for the contents of the box:

  1. Creating a calm space
  2. Distracting the mind
  3. Feeling loved and appreciated
  4. Remembering to look after yourself

STEP ONE: CREATING A CALM SPACE

The space around us can often dictate our moods which is why creating a tranquil environment is so important.

To do this add a small candle (or a reed diffuser if you or your friend live in a property in which they are not allowed to light candles).

I found the smallest ones pictured in THE CANDLE SHOP in Newcastle-under-Lyme town centre for £1.90. The second largest ones were in PRIMARK for £1, and the largest one was in HOME BARGAINS for £3. The reed diffuser was also £3 from HOME BARGAINS.

STEP TWO: DISTRACTING THE MIND

It can be hard to find a hobby and it can seem impossible to find time to do something for fun.

So add something to the box that will offer something fun and creative.

I choose to add origami paper from AMAZON for around £5 for 100 sheets and I printed out instructions that I found online at http://www.origami-instructions.com/

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STEP THREE: FEELING LOVED AND APPRECIATED

Make it personal! Everyone is different and everyone needs to hear different things in regards to support and reassurance.

So if you can, write a small letter to yourself or to your friend, so they can have a friendly reminder of how much they are loved and appreciated even when times aren’t so great.

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Place this letter where you will see it every day!!!

STEP FOUR: REMEMBERING TO LOOK AFTER YOURSELF

If you can’t get a pet, get a plant!

When life is hectic we can often forget to do the little things like drink, eat, get enough sleep etc. but having the responsibility to look after something else can often help remind us to look after ourselves.

To do this, add a small plant to the box and add a sign to it (a sticky note or something similar) to remind yourself or someone else to water the plant but also to drink themselves!!! I found this plant for £1 at MORRISONS.

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Another idea is to add something so the receiver can pamper themselves when times are tough.

I chose to add sheet face-masks which I found cheap at TK MAXX, PRIMARK and MORRISONS.

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Finally: PACK THE BOX!!

 I hope this ‘how-to’ has given you some ideas on how to spread love and appreciation to those who need it (including yourself). 

FINAL DISCLAIMER: This kit is not at all a trivialisation of mental health in any way. If you or anyone you know is in need of emergency mental health support please contact the helplines suggested through this link: https://www.nhs.uk/conditions/stress-anxiety-depression/mental-health-helplines/

If you make a self-care box for yourself or a friend, why not tweet us or Instagram a photo and tag us?

Twitter: @KeeleOf

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