Premenstrual Dysphoric Disorder

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    Undiagnosed autism and using my clinical encounters to improve my communications skills

    Part 1 of 2 I received a late Autism Spectrum Disorder diagnosis in May this year, aged 36 at the time. So now I feel I have been given explicit permission to have ”special interests” – one of which is “communication used in healthcare settings” and the topic of this reflective narrative piece on how I have used my journey navigating through the healthcare system as a form of “therapy” teaching me to learn how to socially interact and communicate better.    I currently have no formal credentials, however I hope that my vast lived experience as a highly complex patient combined with the fact I am currently studying for a Masters degree in Clinical and Developmental Neuropsychology will at least give me a layer of credibility in my reflections below.   In fact, I had previously spent fifteen years under a community mental health team, misdiagnosed with Emotionally Unstable Personality Disorder and a plethora of other psychiatric misdiagnoses. No one, myself included, ever considered that I am Autistic until I learnt about #Autism as part of my MSc Course.    Fundamentally it was in my highly drawn-out diagnostic odyssey and fifteen years of physical symptoms battling to seek a medical diagnosis within the biomedical model to explain my vast array of disabling physical symptoms, where I truly became interested in healthcare communication skills.   It may seem to others I am just collecting “labels”, however my multitude of diagnoses have led me to a far better understanding and self-acceptance of myself as a human being, as well as developing a vast toolbox of self-management skills to help improve my own health and wellbeing away from the medical system.   I remain highly traumatised by the harm caused by misdiagnosis1.  To date, my current list of diagnoses are: hypermobile Ehlers-Danlos syndrome (hEDS), Mast cell activation syndrome (MCAS), Median arcuate ligament syndrome (MALS), Dysautonomia, Complex Post-Traumatic Stress disorder (C-PTSD), Obsessive Compulsive disorder (OCD), Autism Spectrum Disorder/Condition (ASD) and Premenstrual Dysphoric Disorder (PMDD).  On the way home from my ADOS and Autism Diagnostic Assessments in May, I never realised until that point in time how my private medical appointments have been “therapy” for me.  My physical symptom onset really started in my early 20’s.  However It took a long fifteen year battle and struggle of medical invalidation and disbelief until I was finally believed and diagnosed in February 2020 with hypermobile Ehlers-Danlos syndrome.     My reflections here on my healthcare journey and how validating the private appointments were, where the clinicians actually took time to listen and carefully go through my complicated symptoms rather than a very brief ten minute consult where I was just brushed off.   I always have been exceptionally good at “masking” and people always tell me “you cope so well”. Now I am aware I am Autistic this makes so more sense.  However to me personally, communication is an area I know I coherently struggle with, even if others do not think I do.  I struggle communicating my ideas and explaining what I mean and thinking how to explain in a way other people will understand my key points. I struggle with huge anxiety just being around other people and talking to other people.  I struggle to remember what I think I need to tell someone else. I even script out and plan conversations before-hand.    I struggle with not being able to formulate my ideas in a concise and coherent manner.   I struggle with phone calls where I cannot detect the very subtle non-verbal communication in face-to-face interactions. I struggle with the frustration of the exhaustion of explaining things but other people not taking away the key ideas I tell them I want them to hear.    I have never received appropriate psychological therapy (and certainty not in a trauma-informed way) for the level of psychological difficulties I have and the psychological therapies I did receive caused more harm than the good they did.   So “therapy” here, more generally within my healthcare appointments – is terms of the validation of the difficulties I perceived I have as well as a very expensive “course” in “how to improve communication difficulties”.  I faced so much invalidation and cruelty and disbelief from the NHS, so with my private appointments in a nice clean, pristine, quiet calm setting, I have felt very validated, listened to and cared about.   I also developed an interest in the differences in quality of care between NHS and private sector.  Everything I do I am making some kind of comparison observation or learning something, or researching – its exhausting!!!  There has always been some control with my private appointments – I get to know how long the appointment will last, private appointments hardly ever run late, it

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    hellooo

    hii i'm sleebyreeby! i'm a neurodivergent 25 year old with a variety of chronic health symptoms that are largely undiagnosed. seems like they're always evolving, really hard to pin down or get a doctor to pay any attention to. feeling particiularly lonely about it all today, i decided to download this app.

    i'm interested in talking to folks with similar symptoms, as well as just being able to talk openly about how i'm feeling without thinking i'm annoying or disgusting anyone 😅

    #MightyTogether #HidradenitisSuppurativa #IrritableBowelSyndromeIBS #ADHD #Autism #PMDD #PremenstrualDysphoricDisorder

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    We Are Suicide Prevention #PMDD #MentalHealth #SuicidePrevention #TheMighty

    Someone said to me recently,
    'You don't find Suicide Prevention, It Finds You.
    Those words sent shivers through me, like I'd never expected.

    It couldn't be a truer statement.

    It was something, that as a young child, my family would never have thought they would need to equip themselves with; preventing my suicide. As an adult my husband needs to furnish himself with knowledge on how to prevent my suicide.

    People don't know how to talk to you afterwards, they look at you differently, treat you differently. They want to acknowledge what you have done, without actually acknowledging it.
    A fractured mind, a broken soul.

    There's a stigma attached to suicide within society.
    There's a stigma attached to hormones, mental health and menstrual health with society.
    Thankfully its felt by the few and not the many.

    Suicide Prevention is us sharing our stories, reaching others, creating those lightbulb moments & just listening & carrying the weight as a community when the burden of living becomes too heavy in this the cyclical life of PMDD, not just for us as #PMDDPEEPS , but for our partners, our loved ones, our children, our friends, family too, because they feel the weight of our condition as us also.

    We Are Suicide Prevention.

    #SuicidePrevention #PreventingPMDDsuicide #PMDD #PremenstrualDysphoricDisorder #MentalHealth #TheMighty #SuicideAwareness #Suicide #Depression #PmddAwareness #Hormones

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    The Two Faces of PMDD. #PMDD #PremenstrualDysmorphicDisorder #PmddAwareness #MentalHealth #TheMighty #MenstrualCycle

    Every 28 days #PMDD takes 18 days.

    40% of the year is spent being me.
    Don't be fooled into thinking that being me is filled happily dancing around, singing, holding hands, filled with the joys of spring, drinking in those good moments.

    Being me means spending time picking up the destruction left behind after each episode, trying to piece my life back together, trying to hold my family together once again from the damage thats been caused.

    It means the exhausting cycle of putting old plans in place & figuring out new plans to try and minimise the damage that the impending next episode is going to cause closest to me.

    It means forever living with crippling guilt, shame, embarrassment because of things I've said, ways I've acted & a gut wrenching fear that one day I won't ever be able to claw myself out of that hole of continous thoughts and feelings of wanting to be unalive that each #PremenstrualDysphoricDisorder episode brings.

    It means plastering in on a smile for my family while really I'm still crying inside for the days, hours, minutes, I missed with them, whilst a rising anxiety lurks inside me as I know what is coming.

    The rest of my time is spent living as my alter ego, in #PMDDhell .
    Angry, depressed, withdrawn, fatigued, in pain, disassociated from the world around me, in a constant state of self loathing & planning my own demise.

    Even when PMDD is not present, it makes its presence known.

    If you know someone with PMDD, please don't ever tell them it's just #PMS .

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    An open letter to #partnersofpmddpeeps #MensMentalHealth #PMDD #PremenstrualDysphoricDisorder #MentalHealth #lovedonesofpmddpeeps

    Living with Pmdd is difficult for us. But its equally difficult for our loved ones.
    I often feel they are given the hardest hit when our PMDD hell weeks strike as they are the ones closet to us.

    We spent half the month living as an alter ego. From conversations with my own husband, he spends those weeks walking on eggs shells not knowing whether he is going to wake up to a word vomit of my own anger & self hatred that gets directed at him, whether he will find me inflicting harm on body in a desperate bid to try & find a way to release the inner urges to be unalive & see colour in the dark world once more or whether he simply find me drowning in a hell of fatigue, pain & tears.

    It isn't just the monopoly of symptoms for me to deal with, but for him also.

    To often I've forgetten that he needs time to ground himself in the unfamiliar world that is now not just mine, but his also, to cry, to catch his breath, to feel his own vulnerability & be able to talk about it.

    All too often I've taken for granted that my good weeks should also mean they are his, without looking deeper and realising that my good weeks are the weeks that he struggles the most, in the calm before the storm, as he knows exactly what lies ahead.

    Men, partners, loved ones.
    Its ok to cry, to be vulnerable, to show vulnerability, to need support & seek support. Its ok if your good weeks don't coincide with ours.

    You don't have to be ok for us all the time.

    #PMDD #PremenstrualDysphoricDisorder #pmddpartners #pmddrelationships #mentalhealthmatters #mensmentalhealthmatters #MensMentalHealth #MentalHealth #menstrualdisorders #periodproblems

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    Reflection #PMDD #menopause #Reflection #MentalHealth #LifeLessons

    Its been almost a year since I banished her out of my life.
    I cast her out like she was discarded rubbish. I often wonder if she deserved that.

    Was it really that bad? Was she really that bad?

    I miss her. I miss the comfort she bought. I miss her presence. The way she made me feel so in tune with my body. How she intensified every emotion I felt.
    I dont want her back. She was destructive. She broke my soul with her venomous words, her twisted dreams & poisonous thoughts. I was broken when she was near.
    But, I loved her. I needed her. I still need her. Without her I am not whole. Now she is gone a part of me feels lost, trapped in a bleak void forever falling further and further away from me.
    The world seems scary without her. I'm not sure who I am or where I belong. Life is less colourful & more stagnant somehow.
    I want to reach out to her, feel the bitter sting of her impact on my life once more.
    I want to know that she is ok.

    But, I know that she is ok. For she is my PMDD alter ego. I am her and she is me.

    #PMDD #PremenstrualDysphoricDisorder #hormonesensitivity #MenstrationMatters #WomensHealth #mentalhealthmatters #menopause #PMDDthoughts #MentalHealth

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    PMDD and why we need to talk about it

    I have PMDD. I have been suffering with this since I was a young teenager and I believe even before that. PMDD stands for Premenstrual Dysphoric Disorder and it is considered a mood disorder that is caused by hormones and the neurotransmitters not taking these hormones well during your luteal phase. Basically my brain freaks out when certain hormones are going through my body during this time of my menstrual cycle. Most people experience symptoms such as anxiety, depression, rage, bloating or inflammation, muscle pain, intense food cravings, increased sensitivity to rejection, self-critical thoughts, and sometimes suicidal ideation.

    I got my menstrual cycle when I was 10 years old and I remember being really scared. I was told that they were so painful but I was not sure what that would look like. My mom did her best to make sure I understood the foundation of menstrual cycles and what I would need each month but nothing could have prepared her for the years to come where each month I would be filled with rage, depression, suicidal ideation, and all of the other challenges that came with it and no clear diagnosis.

    I did not get a clear diagnosis until about a year ago when I started to do research on menstrual cycles and found out about PMDD. My mom told me how she mentioned it to my pediatrician because she could see that I had issues when I was about to start menstruating but nothing ever came of it and he said to take Advil 3 days before I started to menstruate. She thought back to when she was in her early 20’s and would always be filled with rage and anger before getting her period but didn’t realize this was not a normal reaction. Even before I got a clear diagnosis she was always able to help me realize that it was my ‘PMS’ that was causing me to feel this way. We did not realize this was something other women experienced and that it was in no way PMS and it was a completely different issue causing me to feel this way. It was isolating, lonely, and frustrating not knowing exactly what was going on with my body and mind. I would go to therapy for anxiety and depression and try to track everything but we weren’t solely focusing on one mental health condition because we did not know that’s what it was. I went to the doctor multiple times to get my hormones and thyroid checked and everything always came back normal. It wasn’t until I did research on PMDD and found that no blood test will be able to tell you if you have PMDD because it is not a hormone imbalance it is a mental health condition caused by hormones.

    When I found out about PMDD it only brought a small amount of relief for me because I started to think about the journey that would be ahead trying to learn how to manage it. I was in undergrad, living on my own, and working full time on top of having these symptoms. I was stuck in survival mode until I graduated recently and now I have been left with no choice but to face this. I started to experience more intense suicidal thoughts during my luteal phase and would have intense emotions where I would tell myself I was not good enough. All of the stress I had experienced throughout school and life in general finally caught up and making itself known it was there and it needed to be dealt with. PMDD causes so much emotional and physical turmoil each month that I had to accept I needed to heal from all of the trauma my body had been going through. I have been dealing with anxiety and depression since I was 14 years old and suicidal thoughts were not a new occurrence for me but this level of mental imbalance was new and I needed to learn how to manage it.

    I currently am going back to therapy and I have found a lot of support through the IAPMD (International Association for PMDD and PME) Facebook page and support groups. They offer a wide range or resources and information if you are needing help with guidance. 1 in 20 people are impacted by PMDD and it is not just cis-gendered women. It’s important to stay aware that there are non-binary, gender fluid, trans, and others who don’t always identify as a cis woman but they still get a menstrual cycle. This inclusivity is important to stay aware of because it can help researchers find how this can impact specific populations too. There is help and support out there and talking more about your experience is the first step to educating not just other peers but professionals who may not be aware of this condition.

    #PMDD #Anxiety #Depression #BansOffOurBodies #RoeVWade #Period #MenstrualCycle #MentalHealth

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    Parenting with PMDD

    As a parent living life with PMDD, it can be diabolically hard. There's days when I cannot stand my children's voices. The sound of the innocent laughter, the shouts of 'mum' slice through me as harshly as the ear piercing sound of glass against a knife & when I'm already at the mercy of my hormones, that are so viciously attacking me in every possible way, it simply only heightens my irritability towards my own self.
    I know my children depend on me for love, care, time; they rely quite solely on my existence.
    I often find myself disassociating from my children during these PMDD times in order to survive. Time passes, essentials get done, but I have no recollection of the who's, how's, when's or whys.
    Its scary losing any sense of time, but its even scarier that its become necessary to keep myself alive.
    PMDD takes the best bits of me & leaves me broken, but it has also shown my children a side to life that they may have never gotten to experience.
    They've seen real, raw emotions. They've learnt first hand about how menstruation can impact people & they know the signs to look out for in others & how to have those conversations that their friends find awkward & uncomfortable.
    They aren't ashamed of my disorder & for that I'm so proud.

    #PremenstrualDysphoricDisorder #PMDD #PMDDParents #ChronicIllness