Mental Health Awareness Week: Obsessive-Compulsive Disorder: What You Don’t See

TW: Mental Health, Obsessive-Compulsive Disorder, 

As part of Mental Health Awareness Week we have a blog  post submitted to Women of Keele Educate, the writer wished to remain anonymous.  

 

‘That’s a little OCD’ she says, as, out of boredom, I arrange my spare change in size order of coin.

‘Not really’ I think, whilst laughing and saying: ‘Perhaps.’

 

 

Given that the topic of the month is Mental Health Awareness, I felt my story was one that needed sharing.

In recent years, media discourse surrounding mental health conditions has taken drastic leaps forwards, though there are still areas of misunderstanding.

OCD is a disorder often misunderstood, and frequently used as a colloquialism for ‘a little fussy.’

For those of you unfamiliar with the ins and outs of the condition, what I am about to reveal may blow your mind:

I am both ‘a little fussy,’ and have OCD.

The fussiness is not a part of my condition.

The fussiness is a part of my personality, and something I would never want to get rid of.

The condition is extremely frustrating, anxiety-inducing, and something I would get rid of in a heartbeat given the choice.

The difference? Momentary satisfaction, vs momentary anxiety reduction.

brain-2062048_1920

 

Putting the money in my purse in size order, or re-ordering a pack of cards, is something satisfying to do when I’m extremely bored and waiting for my food to arrive in the pub.

I may enjoy creating the order, but if just leave it be, I’ll think no more about it and be able to enjoy my chips just the same.

 

Extensive lock and switch-checking however, is another matter entirely.

 

I have lost count of the amount of times my family have shouted at me in frustration to ‘just go to bed’ after I’ve left my room and gone downstairs to check that all the switches are off and doors are locked yet again.

The amount of times I’ve been exhausted and just wanted to crawl into bed and fall asleep.

But when I get in bed, all I can think is: ‘did I leave that charger on a heat-proof mat? Should I have done? Or will it be alright?’

Nine times out of ten, I decide that it’ll definitely be alright…but that I should probably go and put it on a heat-proof mat, just to be on the safe side.

I have been told I have what is referred to as ‘harm-focused OCD.’

This means that, when I get told ‘just stay in your room and go to sleep,’ I am incredibly unlikely to actually fall asleep until my brain is satisfied that nobody is going to come into the house and kill my family whilst we sleep, and that the house is also not going to blow up whilst we sleep.

My brain sees it as protection.

Others see it as selfish, unnecessary midnight noise-making.

It is because of my OCD that, as much as I might like to, I have not been able to agree to sharing a house with my friends whilst at university.

Living on campus, I have the comfort of knowing I can check the door is locked as much as my brain likes before going to bed, without frustrating anyone but myself.

Girls at school would talk about how much fun they had at their sleepover at the weekend; the sleepover I avoided due to extreme anxiety.

Eventually, they stopped inviting me.

 

mental-1831391_1280

 

Germs are also an issue.

I guess they too fall under the bracket of ‘potentially harmful.’

Nobody likes to accidentally touch chewing gum underneath the table, but, in my experience, most people pull some kind of weird face, say ‘eww,’ and then get on with their day.

The people sitting next to me when that happens however, suddenly notice it smelling like a dental surgery, as I attempt to discreetly sanitize my hands under the table (I’ve tried the whole ‘pull a face then get on with your day’ thing: I could focus on nothing but the crawling feeling on my hands until the bell signaled the end of class and I could go and wash them).

 

The severe fear of being sick makes me avoid family and friends when they have any illness more severe than a minor cold, making me seem, again, selfish and uncaring.

 

Safe to say, I will not, at any stage of my life, be having children.

Having people rely on you puts on a whole new level of pressure with this type of OCD: a mental condition which constantly makes images of danger flash through your mind, and makes you wonder whether something you do or don’t do may possibly cause death or long-lasting injury to the person in your care forever.

 

man-3591573_1920

 

‘She could babysit!’ a family member says to a friend, as I quickly have to come up with 101 trivial reasons as to why this wouldn’t work out.

‘You wouldn’t like my cooking,’ I tell her 11 year old. In fairness, I probably wasn’t wrong. I would be lying if I didn’t admit to having had at least one major argument about whether or not food is properly cooked in my lifetime.

I work with the mantra of: ‘If it’s completely dry and devoid of all taste, at least I know it’s cooked properly.’

There have been occasions where I’ve decided to experiment with leaving food in only slightly beyond its normal time frame, and then panicked about whether or not I was going to get food poisoning.

By this point I think you’re probably getting the idea, so I’m not going to go on for much longer.

Though, as with any illness, everyone’s experiences with OCD will be different, it is important to remember that in all cases, it is not just a matter of being ‘a little bit fussy.’

We are not trying to make ourselves stand out and get attention for our ‘quirky behaviours.’

 

A lot of the time, you probably won’t even notice there’s anything wrong.

 

A person who walks into university visibly exhausted may not have been up all night partying, or writing an essay they should probably have finished three weeks ago.

They may have tried to go to bed at a reasonable hour and ended up staying up for far longer than that trying to reduce a risk of death that the rational half of their brain knew did not exist.

If a friend is avoiding staying over, try not to assume that they simply don’t want to spend time with you: it’s possible that what they want more than anything is to be able to say yes.

 

If any of the above seems familiar to you, I want you to remember that it’s okay, that you’re not alone, and that it’s not going to be as bad as it seems right now forever.

 

Some doctors and mental health professionals are more understanding than others, but with the right treatment: which can comprise of a variety of talking treatments and/or medication, things can start to look up.

Generally, my pre-bed checking doesn’t seem to last as long as it used to.

As with anything, things tend to escalate in times of stress, but it’s not your fault, and you’re not selfish, even if you think your compulsions have a tendency to irritate others.

I strongly encourage anybody with whom my story resonated to consider seeking help: it may be uncomfortable in the moment, but will be likely be invaluable to your life in the long run.

I can’t say I’m completely cured, but, the majority of the time, I’m streets ahead of where I was, and one day, I’m certain that you will be too.

 

And to everybody else: next time you find yourself using the phrase ‘a little bit OCD,’ please take a moment to remember what it is that the condition can actually mean.

 

support-2355701_1920

If this blog post has impacted you and you need to talk to someone please get in touch with any of the below charities: 

Info about OCD: click here

Contact Details for Help: 

Mind: https://www.mind.org.uk

Samaritans: https://www.samaritans.org

CALM: https://www.thecalmzone.net

You should also be able to get help by talking to your GP.

Mental Health Awareness Week: Why Suicide as a Topic Should be De-stigmatized

TW: Mental Health, Suicide, Loss

Support contact details at the bottom of this post

As part of mental health awareness week I have written this blog, to share what life is like with borderline personality disorder and to explain why we need to be more frank when talking about suicide. 

Suicide is the hardest thing to accept as an answer as to why someone has died.

People always try to evade this topic, even though everyone is blaring out to everyone as to how we should all normalize mental health issues and yet the main killer of mental health sufferers is suicide.

Of course, mental health illnesses are the reason why so many sufferers resort to suicide. I suffer from borderline personality disorder and my daily symptom is constantly wanting to hurt and kill myself. It’s just a fact of my life.

It’s quite hard to understand why people struggle to accept this. A lot of people find it hard to believe that even though I don’t want to die, there’s always a voice in my head that constantly reminds me that I, in fact, do.

Although I’ve now learned how to deal with this symptom, it’s a lie to say that it’s easy to ignore. BPD sufferers take at least 40% of those who die via suicide. We are most likely to attempt suicide within the general population of suicide attempts, and those who do die via suicide are 50 times more than those who attempt suicide due to other reasons.

So as hard as it is a pill to swallow, this is why I talk about suicide just like how I would about the weather.

It took a while for my friends to get used to me constantly talking about my wanting to die, but that is just my way of being honest about what is currently on my mind.

They have now come to realize that if I don’t randomly start talking about death and suicide – that is when I’m more likely to hurt myself.

Only recently has my boyfriend come to terms that it is a topic that he has to get used to.

He always used to tell me that he hates hearing me joke about death and suicide, how I just casually mention my past suicide attempts – and then I attempted to kill myself.

It was only when I heard from your friend that you tried to kill yourself I realized that I should have listened to you more.

 

mental-1831391_1280

What it can look like to be triggered with BPD:

For those who don’t know, BPD sufferers are often labeled as “manipulative” and “toxic” because of how we often end up hurting ourselves when we’re triggered.

What people don’t know is that this is a symptom.

I’m considered a “quiet borderline” within the BPD community, basically means that no one knows I’m suffering with BPD and maybe just think I am a very anxious person – until I act out in tantrums due to being triggered.

It’s only until I start reacting in socially inappropriate ways, such as inappropriate bouts of anger.

I’m so used to being labeled as this, but it’d be a lie to say that it doesn’t hurt.

I know I’m not manipulative.

My friends themselves, get mad at me because I don’t express this enough.

Instead I just end up trying to hurt myself or worse – kill myself.

When I tried to kill myself, I immediately regretted it.

I started to scream and lash out on myself, in front of my best friends.

They tried to calm me down and grabbed my hands away from myself.

I pulled hairs out of my head, leaving me with a slight bald spot. I punched myself repeatedly, leaving bruises on myself.

All because my boyfriend wouldn’t listen to me for five minutes when I asked him to.

Mind you, it wasn’t out of nowhere.

It was building up, the tension and annoyance which I usually am able to control and maintain, it pushed me to the edge.

Why? Because unfortunately, as aforementioned, he just wouldn’t listen to me. In the past I have also done this towards my parents, brother, and friends. I hate it. I hate it more than anything. The fact that I don’t know how to prevent myself from going over the edge.

 

Most people would know me as someone who is very rational and level-headed. They would never expect me to be so emotionally unstable.

 

It pains me to accept that if I’m not able to control myself, I may kill myself just because I feel betrayed by those who I care about the most.

Although now my boyfriend understands and we’re both trying to get professional help for both of us in order to progress, no amount of apologies could get rid of this seeping guilt within me.

I’m terrified that I will betray myself and I will die because of suicide.

brain-2062048_1920

Destigmatization:  Talking About Suicide

But this is why I continually talk about death and suicide as if I am talking about the weather.

I want people to know and understand that this is something that could happen. Something that they must be prepared for, in case it does.

I’m not saying that I’m excusing my want to die, because “well” me doesn’t want to die.

It’s just that if “sick” me takes over, I want people to be prepared for the possibility of me attempting suicide.

It’s a very real thing.

My best friend died this year because of suicide.

The only reason I managed to accept their death due to suicide is because we always talked about it.

The shock of their death via suicide wasn’t as hard as the shock of their death overall.

Everyone kept asking why, why did they kill themselves. My only regret was that I didn’t try to reach out even though I had an inkling they might attempt again.

Other than that, I’m okay with them dying via suicide.

It hurts, it hurts like hell.

But am I mad at them for killing themselves? No, absolutely not. Death is death.

Even though they died young via their own hands, it’s still death. So why can’t we normalize it as another method of dying?

Suicide isn’t just real for BPD sufferers, it can be for everyone who reaches a low point in their life.

So please, talk about suicide. Normalize the talk about death.

There is nothing wrong in talking about it.

 

If we normalize talking about suicide, maybe we can help our friends and family.

Maybe if we talk about suicide more it will allow someone to reach out when they need to.

I love my life now. I have reasons to live for now. I have a lot more coping mechanisms now.

So I hope you all can understand suicide more, from the perspective of someone who constantly thinks about attempting suicide.

Do not feel sorry for me. This is just my life.

If I have accepted this, then why can’t you?

support-2355701_1920

If this blog post has impacted you and you need to talk to someone please get in touch with any of the below charities: 

Info about BPD: click here

Contact Details for Help: 

Mind: https://www.mind.org.uk

Samaritans: https://www.samaritans.org

CALM: https://www.thecalmzone.net

 

Solidarity Visit to Goldsmiths Anti-Racist Action #MyRacistCampus

At the very start of this new year of 2019, I had made a promise with my friend to live our lives without filter – to live life with no fear of consequence as long as it is all for the right reasons.

This promise only strengthened due to their passing last month, and not too long after came something that I resonated with on Twitter: Goldsmiths’ Anti-Racism Occupation.

 

independent angela christofilou

A journalist was also locked in the same day that we were locked out of Deptford Hall || Angela Christofilou

 

Goldsmiths University has been criticized due to the university’s management having taken inadequate action against the racist abuse which was experienced by one of the candidates who ran in their student elections.

It is to no one’s surprise that this candidate falls under the Black, Asian and minority ethnic category since London is well known to be multi-cultural.

The student suffered racist abuse during her election campaign: her election posters  vandalized with racial insults in which they mocked her accent, and her banner physically being removed despite her fellow campaigning peers being left untouched.

To clarify as to why Goldsmiths has been declared as having taken “inadequate action” is due to the fact that they didn’t take any action at all.

Senior management at Goldsmiths have not taken any action since, and have denied access to CCTV footage of this incident. The student union has also been completely silent.

Most people within society believe that we live in a moderately equal world, in which people do not have to visibly campaign and strike against such issues like racism – I should say most white people, actually.

However this is not the case. The reason that I very much resonated with the Goldsmiths’ Anti-Racist Occupation is because of the current movements in our very own university regarding #DecoloniseKeele.

Whether people want to admit it or not, the societal system is biased to benefit white westerners as it is set up by white western men (See the work of Edward Said, or Sara Ahmed for two academics who discuss at length to explain this).

So when W.O.K.E co-founder, Sophia, suggested that W.O.K.E, BAME society, #DecoloniseKeele and Keele Friends of Palestine should do a collaborative visit at Goldsmiths – I rushed at the opportunity.

As fate might have it, Goldsmiths was my friend’s old university before they transferred to Keele for their second year. Maybe it was their way of giving me “go-ahead”? Who knows.

IMG_5372

You could hear the megaphone from a block away, the students were really trying their hardest to make their voices heard

The journey down south to London was incredibly long and tiring, moreover we also broke down as we exited the motorway into Greenwich – making our arrival time even later than we already were.

The whole group was anxious to arrive at Goldsmiths, we knew that the students were facing minor violent actions that the university had taken as a “counter-measure” against their peaceful occupation.

Although yes, the students occupied the hall by making that place their “home” for however long they may need to, the fact that they were locked in on purpose just broke my heart.

I knew this since I regularly check their accounts for their daily updates of their occupation.

After a couple of hours of waiting, we finally made haste towards Goldsmiths only to be told of more barriers that we had to face once we arrived.

The Goldsmiths Anti-Racist Occupation group and management had come to an agreement to allow the students the freedom to walk in and out of the premises without consequences from 09:00-19:00 (9 A.M. till 7 P.M.).

The Occupiers also gave the management notice regarding our visit, allowing the university to know that there will be visitors and more people coming into the building.

The original plan of the day, was this:

  • We arrive at 13:00 (1 P.M.) and have lunch with the Occupiers
  • Discuss with them about their experience so far with their peaceful protest
  • Give them some word of encouragement and food that had been bought for them
  • Leave around the late afternoon and hopefully arrive back at Keele for 19:00 (7 P.M.)
image_6483441

I tried my best to keep documenting what was happening in a thread. Shameless plug, follow me on Twitter: @fidesadee_

Instead, the building’s security were allegedly “sent an email” from management stating that they had orders from them not to let anyone in or out of the building for the whole weekend.

However this wasn’t taken too kindly by the Occupiers as the building has had multiple people come in and out of the building all weekend, and worst of all: on the day of, during the morning white people were allowed into the building.

Security had stopped letting people in the moment they knew that our group from Keele were in London.

It had been a while since I have experienced blatant discrimination via access due to my skin colour, let alone denied access for just being kind and providing food for the Occupiers.

Of course, the moment our group had arrived – the security had stopped letting people in, in general.

According to those on the inside, they had apparently put up a sign stating: “only Goldsmiths students allowed to enter and must provide student ID card”.

This timing was too suspicious for the university to suddenly change its mind.

It was becoming quite clear that the university did not want anyone to support the Occupation.

Our group wanted to show our support and solidarity via our visit; to exchange words in regards to their experiences and give them some morale.

Instead we were met with denial and ignorance by security.

Deptford Town Hall is also open to all members of the public as standard.

 

IMG_5416

There were more people inside the first set of doors trying to negotiate with security in order to let us in, while the rest of use waited outside || @GoldAntiRacism

 

To add to our luck, the weather decided to play up and it started to rain for a good couple of hours.

We were locked out of the building, the Occupiers desperately trying to sway security from the inside whilst we also tried our hardest from the outside.

So many of us were angry, angry that such a thing that we have only heard of in history books is happening to us now, in the 21st century.

The frustration that we felt was indescribable.

The betrayal a lot of us felt was so painful that no one could really vocalize our disappointment fully.

White people, non-Goldsmiths students, had been allowed in before us that day, with food.

Every excuse we were given as we stood in the rain was a lie.

The security team hid behind their black colleagues, making them stand visibly in our way.

We felt even more betrayed.

How could they? How could they stand there, blocking our way into the building? How could they stand there, knowing that this is something that they can fully relate to?

image_6483441 (1)

This was the tweet that I managed to get the picture from || @GoldAntiRacism

We all knew why they were there, choosing to follow orders.

It was obvious to us that the security guards were likely intimidated into following orders, worried they would face disciplinary consequences or worse.

As frustrating as this was, we all stood strong outside and communicated with the student occupiers via the balcony that you saw in the picture at the beginning of this post.

Something that really shocked me was the imprisonment.

The management ordered the security to lock ALL doors except the main front door, and only had security set in place just in case a fire broke out.

Somehow, the student occupiers had become creative over the past few weeks and had made a bag on a rope that they could drop down from the balcony.

This allowed us to send up some food their way.

It was baffling to me that management were saying we couldn’t even give them food and had to use this method.

We tried reasoning with the security guards stating that, it was fine with us to protest and wait in the rain – but at least give them the food.

They firmly stood their ground citing fake emails directing them to do so.

We were all in such disbelief.

University management and the on site security had decided that the occupiers would only be allowed out if there was a fire.

What is this? Are they [students] criminals?

The whole point of this occupation was for it to be a peaceful, but meaningful way to get their message across.

Four years previously, a mostly white students collective had occupied the same space. Getting drunk, having parties and coming and going from the building with no security in place, no consequences to their actions.

This occupation was designated alcohol free, and has been marked by multiple teach-outs, film screenings and study ins.

 

The space has a designated quiet zone for students who get overwhelmed by too much noise.

It is a highly inclusive peaceful occupation space.

The senior management at Goldsmiths university made it seem like they were violent and therefore had to be imprisoned.

A student had to climb out of a  first floor window to be able to leave

Not only was that unnecessary, but that was also dangerous.

The university clearly does not care for their students’ well-beings.

Goldsmiths university was ready to “punish” the students via starvation.

Goldsmiths university was ready to “punish” the students via imprisonment.

Goldsmiths university was ready to “punish” the students, full stop.

This change in policy for handling students dissenting is nothing to do with the occupation.

Building occupation is something Goldsmiths has a strong history of.

It has everything to do with the races and ethnicities of the occupiers.

They are people of colour and so treated as dangerous.

I’m not sure as to whether the university were prepared for our tenacity, but we really did stand our ground.

The Occupiers sent down some signs for us to show around the passers-by and those who drove past.

Many showed support: those who were walking, they stopped and read our signs and/or talked with us then took a leaflet with them; those who were driving honked their horns in support; some of those who were driving even purposely slowed down traffic just so they could read our signs!

Alas it wasn’t all good people who passed by.

There were some who shouted abuse at us, telling us to get a job or whatever other insult they had in their minds.

So many people in society really do believe that these matters do not concern them – and yes, this includes POCs and black people.

Even empathy is hard to come across nowadays, apparently.

Then They Took Our Names

IMG_5414

Sophia took this picture of me talking with one of the lecturers from Goldsmiths, who came to bring food for the students || Sophia Hayat Taha

For hours we stood outside; despite the rain we stood our ground and kept protesting with the occupiers; we wanted their voices to be heard, and so we used ours.

We shouted alongside other Goldsmiths students who came in support of the occupiers.

For hours we kept trying to reason with the security guards to let us in.

At 18:00 (6 P.M.), security finally came outside, made us all show ID and took our names down on a piece of paper.

They said they were ready to let us in. Or so we thought.

They made us wait for a further hour.

They really took their time.

We demanded to be let in.

When they finally began to let us in, hours after our arrival they once again demanded to see ID.

It was a tactic of intimidation.

Finally, one by one, we were allowed into a normally publicly available building that allows non-students in without demanding to see ID.

A wave of relief rode over all of us.

I stood for a couple of minutes by the main front lobby.

We were so stubborn, standing there for hours shouting that I hadn’t realized that my fingers lost feeling a while ago.

The heat from the inside hit me and slowly started to regaining the feeling of my fingers. I breathed a deep sigh of relief and I just thought to myself: “We did it. We really did it, we made it in.”

The hall was so beautifully designed that I couldn’t help but admire the staircase as I walked up them.

Seeing their main banner on top of the staircase, filled me with a sense of pride.

I was so proud of the occupation group.

They really inspired me to do this, to come and show my support for them.

Outside their door was a quote, which they also had another sign which stated that whoever enters through the main lecture hall – they must read the quote first.

As a reminder as to why this occupation is occurring in the first place.

Black and third world people are expected to educate white people as to our humanity.

Women are expected to educate men.

Lesbians and gay men are expected to educate the heterosexual world.

The oppressors maintain their position and evade responsibility for their actions.

There is a constant drain of energy which might be better used in redefining ourselves and devising realistic scenarios for altering the present and constructing the future.

  • Audre Lorde

This quote is spot on.

I can see why these students are still standing strong.

This quote has managed to refine into a small excerpt, the experiences of the marginalised.

Upon reading this, I felt very emotional. My respect for these students rose even higher than it already was.

Surprisingly, they were all ready with food and accommodating. It was someone’s birthday.

There was home cooked food, birthday cake, hugs between the occupiers and Keele Students. We shared relief, exhaustion, understanding, celebration.

We sang Happy Birthday to the student, the woman who’s experience of racism during an election had been the tipping point for many students to come together and demand change.

Although brief, I had an opportunity to speak amongst the occupation’s students.

The everyday experiences of racism that they shared with us was heartbreaking but familiar.

It’s the start of Easter break, and instead of going home – many of these students have chosen to stay and occupy the building.

Albeit forcibly so, since they’re locked in.

Once again, it struck me as awful that previous occupations led by mostly white students had been allowed to come and go from the building, to have the equivalent of a giant party but that when people of colour stood in occupation, they were subjected to frequent lock-ins. 

We exchanged worries since security had been ordered to lock all of the exits except for the main front door, and this was heavily guarded by at least two security guards.

The students who were peacefully in occupation, a protest tactic used by many before them were being denied basic needs such as food.

Management had also given orders to have the bathroom screwed shut – but luckily the students managed to prevent this from happening.

These occupiers were being treated like animals, rather than humans.

Whether Goldsmiths university wants to admit it or not, they are resorting to violent acts in order to get the students to stop their occupation.

The change is because of who was in occupation.

 

IMG_5418

Sophia sent me this picture at the end of the night, my signs unfortunately stayed in our broken bus – but at least passersby knew we were there for @GoldAntiRacism || Sophia Hayat Taha

 

Taking The Stories Home

A few of us didn’t stay for long, we had to be back in Keele by the end of the night at least – I was one of those people.

My mental health deteriorated by the end of the night.

I was getting so upset and triggered by the whole situation. I suffer from Borderline Personality Disorder, and this basically means that I’m emotionally unstable and extremely empathetic, so much so that I feed people’s energies.

Usually I’d be okay, being able to socialise more and listen to their stories.

However it was too much for me that day.

All I wanted to do was cry.

I was so upset, since I could feel how they all felt.

Although they were all so strong for standing their ground with occupying the building, I could also feel their stress and their pain.

That and being exhausted physically, it just made me so vulnerable.

I knew that if I stayed, I would’ve just been irritable because of my incapability to control my emotions.

I also had other reasons for leaving, but mainly it was because I really couldn’t handle the pain anymore.

You could feel the energy from everyone in that room: the frustration, the pain, the stress.

I was so proud of them for being staying so mentally strong.

It’s beyond upsetting, seeing how they are being treated.

During the journey home on the train, I had so many questions.

How can such a thing happen in this modern era? In 2019? Decades ago, there were rallies for equality.

Something that many of us POC born after these occurrences, never expected to have to carry out ourselves.

Why is it that oppressors would rather sit comfortably in their privilege rather than allowing others to also be comfortable with them?

Why does anyone have to be above another?

Why does a hierarchy have to exist?

Something as basic as equality and having a university acknowledge that a racist incident happened – and then addressed with – was that really such a hard thing to be done?

As of today, the Goldsmiths Anti-Racism Occupation has been on-going for a month.

They recently had a Skype session with students from John Hopkins University who are campaigning against private police on their campus.

These very students are also suffering from racial profiling amongst their BAME community.

There is also a hunger-strike happening at Birmingham university that started a few days ago.

Knowing that more and more universities are standing together in solidarity and supporting each other brings me hope.

Hope that there are people like us out there, who care enough for things to change.

Not just for us, but for the next BAME generation who is yet to come.

The Press is listening, but sadly management still ignores the problem. 

Press Links: Amal Bider, Goldsmiths anti-racism action group, on occupation of Uni building by student activists

Anti-racism protesters occupy Goldsmiths university building

UEA statement of solidarity

The Manifesto From Goldsmiths Anti-Racism Action Group: http://tinyurl.com/GARAmanifesto

 

We hope we can add our own SU’s official statement of solidarity soon, until then we send solidarity from WOKE, BAME Society, Keele Friends of Palestine and Decolonise Keele.

More Photos to Follow

Written by: Fides Dagongdong
Twitter: @fidesadee_
Wordpress blog: @fidesadee
Facebook: https://www.facebook.com/fidesadee/

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.

img_3051

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.

Global Fair Stall

We are planning an event next semester during International Women’s week to celebrate and create a discourse about our cultures individually and together as People of Colour.

The information will be updated here

We will have a panel discussion which will include topics such as colourism, gender roles and sexuality.

As some of you may know Keele has a annual global fair which celebrates diversity and the contributions of others.

We had the opportunity to promote Cultural Affairs at the annual Global Fair launch.

The main idea surrounding the event is creating discussions on important topics that are not discussed enough.

When planning the stall we decided the best way to start a conversation around culture was to ask people what they loved and celebrated about their culture and what they would change.

img_1332

As one of the topics will be discussing is on colourism, we decided to bring this subject to the stall to understand what other peoples perceptions on the topic.

We discussed the issue of negative connotations associated with dark skin especially with women and how colourism has impacted our experiences growing up.

It was a great opportunity to engage with people that had so much to say on the subject.

img_1330

We also asked people to self-identity and write where they are from as a way of showing that there are people from ethnic backgrounds that are part of LGBT and identity-based communities.

The stall gave us the opportunity to have meaningful conversations that confirmed these are the topics we need to be talking about among peers.

img_1333

We welcome everyone to attend Cultural Affairs and become part of a big step towards a cultural shift at Keele.

For more information feel free to contact me (Ade) or Raveena.

Ade (w6j55) + Raveena (w6h50)

or get in touch at the woke email using the below form: