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.

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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.

 

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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.

 

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‘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.

 

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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.

 

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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.

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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?

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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

 

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