Have you heard of Premenstrual Dysphoric Disorder? Not likely.
In fact, a number of illnesses which affect only specific groups of individuals (as we discussed in regards to Endometriosis) go unheard of and widely underdiagnosed. Truly, we often just don’t think or learn about things unless they directly affect us. This said, when we do begin to experience any collection of symptoms or ailments, we may find a great deal of comfort in a diagnosis, a term to identify with and exist within. So, this leads us to ponder the implications of the diagnosis itself, how we engage with it, how it changes the ways in which we relate to ourselves and others, and what it means to us as human beings. We’d like to explore this particularly compelling topic through an exploration of a personal experience with Premenstrual Dysphoric Disorder.
When Something Just Isn’t Right
Almost all women have experienced some kind of PMS during their reproductive years. These symptoms can be emotional or physical, but they don’t typically affect a woman’s life beyond being a thorn in your side. But recently during PMS, I started having much more intense symptoms (particularly mood swings), which became increasingly difficult to control. It would always happen the week before my period and disappear almost immediately on the first day of my cycle, so I assumed it was regular PMS. It wasn’t until I started having suicidal thoughts that I considered that it might be more than PMS. I learned from my doctor that what I experience, premenstrual dysphoric disorder (PMDD), affects roughly 2-10% of women. Through an exploration of PMDD I came to appreciate how much we all can gain from having a language of diagnosis; to associate with, to help us understand our bodies, and validate us rather than alienating ourselves when we are in pain.
What Exactly is PMDD?
“I don’t even recognize myself”- Kristin L. (40)
“Saying I’m ‘just emotional’ is like saying a habanero is ‘just spicy’”– Kenlie T. (36)
“It impacts my ability to take care of my child”– Jessica S. (28)
“I have run into that problem a lot at previous jobs and it makes it really hard to be taken seriously. It’s bullshit because my feelings are valid regardless and also PMDD is not a joke.”– Amanda F. (28)
PMDD is currently the only premenstrual disorder classified in the Diagnostic and Statistical Manual of Mental Disorders (DSM5). The symptoms of PMDD can be both mental and physical, most of which are also typically experienced during PMS, and some of which are reminiscent of a variety of mood disorders. What distinguishes PMDD from mood disorders is timing and what differentiates it from PMS, is the severity of symptoms. Furthermore, one of the greatest obstacles for diagnosing PMDD is that if psychiatric evaluation does not coincide with the cycle of symptoms, it is largely left up to the patient to recognize the relationship between their menstrual cycle and PMDD symptoms. Women with PMDD will experience at least 5 of the following symptoms;
- Mood Swings
- Depression or Hopelessness
- Intense Anger and Conflict
- Decreased Interest in Usual Activities
- Difficulty Concentrating
- Change in Appetite,
- Feeling out of Control
- Sleep Problems,
- Cramps and Bloating
- Breast Tenderness
- Joint or Muscle Pain
Symptoms appear 7-10 days prior to menstruation and usually subside within a couple days of bleeding. The most striking characteristic of PMDD is the severity of symptoms are debilitating, interfering with daily life including work, school, social life, and relationships.It is unclear why it has taken until now to identify this debilitating disorder, that affects up to 10% of the female population. There is, however, more research underway, which we can only hope will illuminate some of the emerging and disturbing patterns.
Potential causes of PMDD
Studies among families and twins have led some to speculate that PMDD is inherited genetically. Other research suggests that women with PMDD may have developed a tolerance to certain calming effects and normal emotional regulations occurring in women without PMDD. Many women with PMDD have a history of depression or sexual trauma. Furthermore, women with PMDD will usually experience worsening symptoms over time and following reproductive events like pregnancy, birth, and miscarriage, and are at a greater risk for postpartum depression and suicidal behavior.
However, many online resources list that PMDD is simply caused by abnormal reactions to hormonal changes during the menstrual cycle. Knowing more details about what current research has shown, this can seem like an oversimplification. It forces us to consider the value of correct and appropriate terminology and leaves us wondering how much the failings of language can prevent diagnosis.
The Language of Diagnosis
Using premenstrual symptoms as an example of this, some of the terminologies we are accustomed to feel a little like a modern-day counterpart to the Victorian-era “hysteria”- a grossly misrepresentative catch-all term for issues that are under-researched and misunderstood. Terms like “mood swings”, “tenderness”, “irritability”, even “cramps” don’t do justice to the physical and emotional experience of these things at their most intense. Terms like this that lack a certain weight, lend themselves to normalization of the symptoms which can deter people from seeking help for fear of feeling patronized.
Here are some alternative words, phrases, and strategies to use when describing pain or those hard-to-define negative sensations (like just feeling “off”), that too often get downplayed for lack of appropriate terminology.
- What do you feel: pain, discomfort, distress, uneasiness, weariness, fatigue, exhaustion, disassociation, agitation, pressure, stiffness, tension, ill at ease
- When do you feel it: make note of any patterns you have noticed. If it’s hard to pin down exactly what you’re going through, any tangible pattern or observation can be really helpful in the long run.
- How does it feel: sharp, strong, dull, tense, aching, throbbing, burning, pounding, constricting, unsettling, disarming, disturbing, lingering, sickening, heavy,
Don’t be ashamed to ask for and pursue help. Try to call it like it is; if you feel the pain you’re perfectly entitled to say that it hurts. To a degree, it is helpful to consider your situation in relation to a grander scope of issues, but don’t normalize your experience too much. On one hand, normalizing too much can lead to misdiagnosis, whereas raising awareness offers a space for discussion and opportunity to illuminate shared experience. The great strides made in recent years towards mental health awareness show how helpful it can be to have a language and community to associate with when something is going on in your body that you may not understand when you can’t just flip a switch and “get over it”.
Without a language or context for what we’re going through, it can be easy to normalize what we are feeling, to the point of erasing personal suffering. It’s easy to think, “lots of people have this problem” or “other people have it worse”. In my case, because I didn’t have a context to think of my symptoms outside of normal PMS, I didn’t have much of a framework to realize something else might be wrong. When I finally opened up to my doctor, her knee-jerk reaction – a sharp look of concern- was the first time I ever considered that there might have been more to it.
I consider myself lucky that my doctor responded right away, and told me about PMDD. I can imagine a lot of scenarios, even with other healthcare professionals who I’ve seen in the past, who wouldn’t have taken me seriously because, on paper, the symptoms are common to PMS. I now have a newfound appreciation for listening to my body. It may not be especially scientific, but you are the only person who truly knows how you feel. Describing a symptom on a scale of one to ten is objective- but only you know what that number truly means, and how it has affected your life.
Communication is Key… Period.
Although it can be incredibly frustrating to navigate our way to treatment without an understanding of what’s really going on, or how to explain what’s happening, it is important to self-advocate. It is often uncomfortable and discouraging to feel like the popular terminology falls short, but communication can also play an important role for self-therapy. Having a support system is in some cases more effective than a clear-cut diagnosis. In keeping the lines of communication open, perhaps we can create our own languages that succeed where the current terms fail, and understand ourselves better from the inside out.
(2017). Gia Allemand Foundation. What is PMDD? Retrieved from https://giaallemandfoundation.org/about-pmdd/
(2017). U.S National Library of Medicine. Premenstrual Dysphoric Disorder. Retrieved from:
Edwin R. Raffi, MD, MPH, & Marlene P. Freeman, MD. (2017). The Etiology of Premenstrual Dysphoric Disorder: 5 interwoven pieces. Current Psychiatry, Vol. 16, No. 9, p. 20-28.
Epperson, C. N., Steiner, M., Hartlage, S. A., Eriksson, E., Schmidt, P. J., Jones, I., & Yonkers, K. A. (2012). Premenstrual Dysphoric Disorder: Evidence for a New Category for DSM-5. The American Journal of Psychiatry, 169(5), 465–475.