Blog 04. 'PMDD: my three pet hates'

by Anonymous

So I’m just going to come out and say it. I have PMDD and have three pet hates:

1. People who refer to it as just 'PMS but a bit worse' or who discount it completely.

2. Those who make it a competition with physical symptoms.

3. Referring to hormonal treatments such as the pill as birth control/ contraception when it can have many other uses.

So the first one…

This is probably the most obvious one that people living with PMDD face. Everything in the public domain tells people to ask for help when they are struggling, talk to people. Well what happens if you do that, when you ask for help or explain your experience and it gets dismissed? Sometimes this is from friends/ family/ colleagues and sometimes, more worryingly, from medical health professionals. I vividly remember one female doctor telling me that "We all feel our mood swings are bad, but that’s a normal part of PMS".

She changed her tune slightly when I asked if it was normal in one day to:

1. cry because you had to share a desk and your brain told you it was because people were trying to get rid of you;

2. are so hyper you run around the room doing laps…in your office;

3. get so angry about a simple question that you throw an exercise ball at someone when they aren’t looking so it hits them in the face (not proud of this);

4. end up unable to sleep at all, but also want to go to sleep and never wake up because it would just feel easier than dealing with this anymore.

Raising awareness and education about the true impact of PMDD is vital, but, and here is my big question...

"Why does it become the job of those living with PMDD to do this?"

Whilst talking is key, it sometimes feels like it’s become my job to talk to people, to flag it up, to advocate, rather than just being able to live my life. I recognise how important this is. Indeed I’ve had people tell me that posts/ articles I’ve shared/ discussions with people have helped play a role in them finding that lightbulb moment in understanding what’s going on. I get this and I’m pleased but part of me is angry that this only happens through chance encounters or conversations.

We need to get better about making mental health and wellbeing a bigger part of our general healthcare- not just when we reach crisis point but earlier, before the crisis hits.

The second pet hate is tricky…

I completely understand how debilitating and devastating physical symptoms can have on people’s lives, this comment in no way is to diminish their experience. However, this is part of a much wider issue in society and healthcare in general. We often forget or dismiss what we can’t physically see as suffering. I understand why, it’s hard to conceptualise internal pain that comes from mental health issues, but we have to try.

I’ve lost count of the time people have told me "At least you don’t have really bad cramps or heavy bleeding" and you know what, to start with I believed it.

I started to dismiss my own experiences because there were other people who were ‘worse off’. That’s not helpful. Just because someone is having a different experience, or even a worse experience, doesn’t dismiss your experiences. If it’s affecting your life it’s important and other people’s experiences don’t invalidate what you are going through.

Finally, and this is my big one...

calling hormonal treatments, birth control or contraception.

I have issues with this for a whole host of reasons, not all PMDD related! Language is so important, how we frame things can determine whether we allow space for certain discussions to happen. So why is this such an issue to me? Well for one, referring only to them as birth control shuts down discussions about other reasons that people may need to use them. Some might question why you would take them if you aren’t sexually active, there almost feels like a judgement being made about taking a drug that is deemed ‘unnecessary’ because of this lack of awareness. However, this framing may also reduce discussions about the wider implications of not being able to access hormonal treatments (including HRT), not just unwanted pregnancies.

To better understand how important the language we use is, we can look at the response to issues around access to hormonal treatments in the current pandemic. Many articles and organisations have, quite rightly, started to express concerns about the implications of lack of access to 'contraceptions'. Articles such as this one in the independent details the implications of a potential increase in unwanted pregnancies if those menstruating cannot access 'contraception'. This article, and others, discuss alternative options including changing pills, switching hormonal treatments or just 'using condoms'. Whilst these may be helpful suggestions there is nothing to suggest how to help people who rely on particular treatments for reasons other than contraception and gives no discussion of the implications.

In my experience, I rely on a certain pill to control PMDD and have done for a few years. I have been on many alternatives but this is the only one that works to keep me in a ‘normal’ state of being. I’ve already had to stop pharmacists from giving me a generic version but if there are shortages then what next? If I am unable to access this specific pill, then the implications are a reduction in an ability to function at my work and actually just at life, relationships will suffer and the reality is that suicidal thoughts and thoughts of self harm are highly likely to return.

I’ve been lucky so far in that attempts during dark days were not successful but there is no guarantee of this in the future. This may sound overly dramatic, but those living with PMDD will understand that this is reality.

I’m not alone in this experience and yet all the articles I read about potential implications of lack of access to ‘contraception’, particularly in the current climate, relate to transmission of sexually transmitted infections or unintended pregnancies. Whilst these are clearly important concerns, my worry is that people like me are being omitted from this story, their voices are not being heard. If there are further shortages or reduced access to services and treatments, then will a focus on birth control mean that those not using it for birth control will be denied access? Will it become a hierarchical way of accessing, where those accessing for birth control or physical symptoms are prioritised over those using it to maintain a ‘normal’ state of being and if so what will the long term implications be for people unable to access services that are already limited?

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This blog site is hosted by Dr Lynsay Matthews, Research Fellow and PMDD researcher at the University of Birmingham.

If you'd like to share your story, drop Lynsay an email at drlynsaymatthews@gmail.com

If you'd like to hear about or be involved in Lynsay's research see her research page ⬇

Visit Lynsay's research page

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LOOKING FOR MORE INFO ON PMDD?

A reminder that you'll find up to date information and support for PMDD at www.iapmd.org For info on raising awareness visit www.viciouscyclepmdd.com