PMOS and the Acronym Crew
LOL OMG WTF
PMOS/PCOS/PMDD/ASD/HRT/OCD/SSRI/ADHD… being a part of this world means suddenly becoming familiar with a hell of a lot of acronyms. My most used tended to be OMG WTF LOL when it came to this condition, but I guess every day is in fact still a school day.
So, why are semantics important? Well, simply put, I think it’s down to labels. Would an employer take action if you said you couldn’t do your work today because your brain felt a little foggy? Would your doctor refer you elsewhere if you said you felt a bit bloated? Would your partner allow you to be rude if you told them you feel a bit off? I’m guessing no, but things might shift if there was solid evidence to support your symptoms.
For me, being able to say ‘I have…[insert shit, life-long annoyance here]’, with a diagnosis backing, actually does. If I mention a symptom, feeling or side-effect I sometimes wonder if people glaze over a little. After all, there are so many happening all the time that I probably do sound like a negative old broken record. But when it’s explained in the context of a condition, in the ears of the listener, it might make a little more sense. After all, if you were hobbling around saying OWW MY BACK HURTS QUICK GIVE ME A CHAISE LONGUE TO LIE ON, FAN ME AND FEED ME GRAPES, you may be accused of being somewhat dramatic. But if you told someone you had arthritis you would absolutely rightly be treated with greater care, allowances, and grapes. And if you’re not demanding that, check yourself girl, you deserve it.
I recently had the pleasure of meeting some of the incredible volunteers from The PMDD Project: the UK’s first charity focused on Premenstrual Dysphoric Disorder, or PMDD - a cyclical, hormone-based mood disorder causing severe emotional, mental, and physical symptoms. The resounding message that left me after talking to these queens was that getting a PMDD diagnosis, sometimes after over a decade of fighting for one, was vital for them.
Why? Of course it’s different for everyone, but a diagnosis can be the biggest step both in managing your health and exploring treatment options, whether they come via medicine, lifestyle changes or simply through community. It’s also, crucially, validation of your feelings and a greater understanding of your body. Putting a name to debilitating symptoms can lessen self-blame, shame, and worry.
Side note: what The PMDD Project does for women here is phenomenal - providing on-hand support via WhatsApp groups, in-person meet-ups across the country, and a wealth of advice and resources online. I don’t (yet!) have a PMDD diagnosis but the links to PMOS are huge, and I find everything they do so helpful for my PMOS too.
Imagine though, if you ticked every box for X syndrome, disorder or condition, yet still had no diagnosis - or, potentially even worse, you’re handed a misdiagnosis. As us PMOS gals know, hormonal imbalances frequently have cross-over with other metabolic, psychological, and autoimmune conditions, and even subsequent diseases if not properly managed. This can lead both to no diagnosis (I’ve experienced a complete lack of care because the whole body/mind picture is too wide for some healthcare professionals to properly assess) or a misdiagnosis. Often women have to battle through misdiagnosis of say bipolar disorder or depression, because their hormonal fluctuations were causing such strong psychological impact. The danger here, of course, is that you can be mistreated and given wildly incorrect medication.
So yeah, unfortunately the diagnosis picture is hazy and long and hard and well, persistence really is key. And if, like me, you take one look at that sentence and think how the fuck can I be any more patient here when I spend half my life simply trying to survive, then I feel ya...
Hopefully these 5 tips might help:
Do your research. Believe it or not, there are key terms and phrases that should make your healthcare professional listen up. In the UK, that’s mapping directly to NICE guidance, referral pathways, and NHS primary care responsibilities. Look em up pals.
Don’t be afraid to speak up! It’s tough, and the medical world is already skewed against us as it is, but try to be as clear and firm as possible. The key is to frame your request around persistent symptoms and impact on daily functioning.
Know what you want your outcomes to be. You’re not a doctor and you’re not meant to know what to do next. If you feel like you aren’t being heard, be clear with your request for further assessment or referral to an expert.
It’s OK to leave! If you’re really banging your head against a brick wall, then well, get outta there… but also try to take your persistence with you and look for help elsewhere. Different professionals will have different levels of knowledge and understanding of your conditions. Side note: I once got told, MID-VAGINAL SMEAR with by a middle-aged doctor bloke half way up my hoohaa, that I needn’t worry about my PMOS (at age 25) because everything will be fine once I had the menopause. RUN AWAY FROM THESE PEOPLE!
Try to be gentle with yourself. This one is easier said than done while already dealing with overwhelming and debilitating symptoms, with no clear light at the end of the tunnel. Take breaks, reach out to support networks and know you’re not alone - please reach out to The PMOS Predicament if you’d like to discuss your diagnosis struggles.