“Like Being In An Abusive Relationship” – What it’s like to live with Pre-menstrual Dysphoric Disorder

living with PMDD

“Oh my God, my period is making me crazy!”

If you’re a woman who has experienced the ‘joy’ of menstruation, it’s likely you’ve joked from time-to-time about your period turning you into a crazy person (perhaps the kind who yells at her boyfriend for bringing home the wrong kind of chocolate? *cough cough*).

However, for a small percentage of women, ‘that time of the month’ goes far beyond the average symptoms of sore breasts and chocolate cravings, with 3-8% of women suffering from a gene that causes severe fluctuations in mood — including confusion, paranoia, and thoughts of suicide.

“It’s so sudden when it hits that I feel like I’m losing my mind” explained Rachael, a 32 year old drama teacher from NSW. “I can go from feeling totally normal one week, to feeling irrationally depressed and anxious the next.

“The anxiety makes me feel like I’m on fire. I can’t sit still, can’t focus on any tasks. It feels like you’re under threat and there’s some big emergency that no one else can see — and  then you start to feel insane.”

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Now 32, Rachael has suffered with PMDD since her mid teens

Known as Pre-Menstrual Dysphoric Disorder, PMDD is a severe medical disorder that results from an abnormal sensitivity to progesterone and estrogen — causing extreme fluctuations in mood that, unlike PMS, severely impair the person’s ability to function on a daily basis.

At times, PMDD can even mimic the symptoms of mental health disorders.

“Often I’d question whether I had Bipolar disorder — but at the same time, I also had doctors telling me I had PTSD, or that it was just depression,” explained Rachael.

“In my teens and early twenties I just thought it was normal to feel this way, because everyone seems to have drama going on when they’re young, you know?

“But as I got closer to 30, and things in my life were stable and there was nothing I could blame, I knew it had to be more than PMS, because I was still having these episodes where out of the blue I’d feel like self harming for no reason.”

It is a battle that American author Liana Laverentz can relate to, having spent more than 40 years living with PMDD, and being falsely misdiagnosed with everything from depression, to PTSD, Polycystic Ovarian Syndrome, and anxiety.

“I know that advocates for the mentally ill often object to the use of the word ‘crazy’, but that’s exactly how PMDD makes you feel,” she says.

liana
American Author Liana Laverentz has suffered with PMDD for decades, and describes its impact as akin to ‘living with an abuser’

“One day you’ll feel like your life is completely fine and all is well, and the next you’re filled with unspeakable despair, and feel like it’s completely hopeless — yet nothing has changed, except the way your brain works.”

Liana, who also runs an online support blog for fellow sufferers, says she was lucky to find a caring medical professional who supported, and worked with her, for more than three decades. However, after her doctor retired last year, she was once again ‘thrown into the pool of misdiagnoses.’

The first time my prescriptions (estrogen patches and progesterone capsules) came up for renewal, the new doctor refused to renew them, and — after nine years of stable treatment — within days I was right back where I had started in 2009, pre-treatment.”

“No one has a clue what we have to deal with each and every day, just to survive. Did you know a woman can spend 17-19 years of her life in a state of PMDD? That’s a long time to spend in hell,” she states.

Sadly, Liana and Rachael’s experiences are not unique.

According to research from the online awareness project ‘Vicious Cycle: Making PMDD Visible,’ 24% of women surveyed admitted it had taken them more than 15 years to obtain an accurate diagnosis, while 10% revealed being told by their doctors that ‘PMDD does not exist.’

Vicious Cycle Co-Founder and Director, Laura Murphy, says that 15% of women with PMDD will attempt suicide within their lives.

“Many sufferers — of which I know a few — have made numerous attempts to take their lives,” she explained.

Laura, who lives in the UK and also suffers from PMDD, says she began the Facebook page to create more awareness and help others who feel isolated or alone.

“For many years, I suffered without knowing what was wrong with me and would have these scary thoughts. It breaks my heart knowing there’s others out there going through the same thing, all while being told they ‘just have PMS.’”

Rachael knows the feeling, having spent almost 15 years being told it was ‘all in her head,’ before finally deciding to take matters into her own hands. After months of online Googling, she finally discovered a host of online forums, filled with other women complaining of the same symptoms.

“It was a huge relief when I finally discovered what was going on…to know that this is a real, physical thing that is happening in my body,” she revealed.

With research listing divorce, broken friendships, mental health breakdowns and financial hardship as some of the most common outcomes experienced, it is undeniable that PMDD has far-reaching, tragic, and serious consequences.

Liana compares the impact of the disorder to that of living with an abuser, and says the illness not only contributed to the breakdown of her marriage, but also prevented her from pursuing many relationships in her youth.

“Much like an abuser, the PMDD brain convinces you that you are this terrible person whom no one would ever want,” she says sadly.

“It constantly fills your head with lies; lies about you, your abilities, your loved ones, your friends.. I rarely dated anyone more than twice, for fear that they would discover ‘the real me.’”

Likewise, Rachael agrees.

“With the PMDD, it makes you feel very confused; really cloudy-headed. I’ll start having a fight with my partner, but won’t have any clue why I’ve started it,” she shared. “Then I’ll catch myself and think, ‘Who is this? This isn’t even me talking right now.’”

Interestingly, it was Rachael’s long-term partner of seven years who ended up being the catalyst to discovering and managing her PMDD episodes.

“He was the first guy I’d been with to really stop and say, ‘What the hell? This behavior is not normal. What is going on here?’, she admitted.

“So we started tracking my symptoms, and discovered that they always start around two weeks before my period, and then come on again 8-10 days after it finishes.”

Rachael & her family
Rachael credits her partner with helping her to discover and manage her PMDD when it hits

With the disorder taking up such a large portion of each month, PMDD puts a huge strain not only on women’s personal relationships, but also their capacity to work. Recounting on previous jobs she worked prior to starting her own business, Rachael recalls having to ‘hide herself away’ in the office bathroom when her PMDD hit.

“I would just cry and cry, not understanding what was happening to me.”

“I’m lucky that I’ve been able to set up my life so that I can now work around my health, but not every woman has the option of just not going to work — and for those who do, they often need to be heavily medicated to make it through the day,” she says.

While there is no present cure for the disorder, having a supportive network, changing your diet, and charting your symptoms can help to provide a sense of relief when PMDD strikes. For Rachael, keeping an ‘emotional wellness journal,’ and cutting out caffeine, sugar, and wheat makes a huge difference, while Liana gives herself permission to rest and focus on something ‘positive and uplifting’ during the rough days.

“I now try to stop my negative thought patterns when they appear, and instead of telling myself I’m crazy, try to recognise how strong I am,” says Rachael.

Above all, the two women want fellow ‘PMDD warriors’ to treat themselves with kindness, and to keep searching until they find a medical professional who will work with them.

“Trust your instincts; do for yourself what you would for a best friend,” says Liana.

“You are worth the effort.”

 

 

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