Guest Post: Milestones & PMDD
Birthday milestones have always been a significant marker of how I both experienced and remember my illness. On my sixteenth birthday, I was removed from high school and locked in a mental health unit where I was forcibly held for many months. On my twenty-first, I didn’t have a single friend in the world and was mentally and physically fading fast. For me, another birthday simply meant that I had been kept alive for another year; I had not lived. On the lead up to my twenty-fifth birthday, my only wish was for everyone to finally let me go. After eleven years of struggling with the most harrowing mental pain, it seemed that there were no more avenues left to try. There were no more promises that if I held on things would get better; I was completely broken and could not take another single day of feeling this way.
Rewind to turning twelve and it had seemed that the world was my oyster; I was a smart child and loved by an amazing family. Despite the challenges that many young people face, I was privileged that nothing bad had ever happened to me and my future seemed bright. Yet upon turning thirteen, I found myself suddenly and inexplicably thrust into a world where I was overwhelmed by crippling feelings of depression and anxiety. Overnight I changed from a happy child into someone that resembled a shell of my former self, yet I had no idea what was happening to me and felt utterly powerless to stop it.
By my fifteenth birthday, things had greatly escalated; I was self-harming on a daily basis and had attempted to take my life on a number of occasions. The unbearable feelings of fear that I experienced daily left me feeling incredibly alone and scared, whilst clouds of darkness and hopelessness seemed to envelop me. These feelings made no sense to me and I struggled to explain to countless doctors and therapists about what was happening. Labels given to me ranged from a mental breakdown, depression, and anxiety to ‘time wasting and playing games’; words which shattered my trust in others for a very long time.
I find it traumatic to recall many of the things that happened to me during my teenage years, with my memories characterised by crises, hospitals, and feelings of the most overwhelming terror. More than anything at this time, I wanted people to hug me and for them to make these feelings better but when I realised that they could not, I began to reject anyone who got too close. As my illness progressed, I could not be touched and I could not be reached, eventually shutting down all forms of communication. I tried to run away on a number of occasions, trying to run from the feelings that were consuming me from the inside out but it was never enough. Other than death, there seemed nowhere for me to go.
During the depths of those years, anorexia rapidly became my friend. Partly as a coping mechanism as it gave me something to both focus and hold onto within the chaos of my existence, and partly as something that I had inadvertently discovered helped. Without understanding its meaning, I had found that lowering my weight to dangerous levels brought a sense of calm to my mind that nothing else could achieve and I desperately clung onto this at all costs. Little did we know at this time that the benefits I experienced from stopping my menstrual cycle through weight loss, were the first indications toward my eventual diagnosis.
I was very fortunate during my early twenties to have support from the most incredible therapist. In contrast to some therapists before her, this lady never made me feel like a burden for not being able to provide reasons to justify the way that I was feeling. She was always there for me, no matter how desperate I felt and never once made me feel that this was my fault. During our sessions, she encouraged me to keep a diary of my mood and as the months progressed, we began to notice a pattern in my experiences that appeared to coincide with my periods. Whilst this was something that I had never noticed before, I didn’t truly realise the significance of this discovery at the time. Hopes of my life being different had vanished many years ago and this new knowledge that my experiences may be linked to my menstrual cycle only made me feel more powerless and at the mercy of my body’s responses. Assuming that this was something that I would have to manage and live with, I knew in my heart that I could not. This was the evidence that I needed that things would not get better by will-power alone; I was exhausted and knew that this the was time for my battle to cease.
For my twenty-fifth birthday, instead of the ending that I had been expecting, I was given a lifeline. Through trawling the internet, my mum identified a consultant who specialised in hormonal difficulties and we arranged to see him; one final shot. The day that we first met, every part of me was broken and we all knew that I had reached the end of the road. It was now or never. Given my worrying presentation, I commenced an experimental treatment immediately and I am so incredibly thankful to say that it was like a switch had been flicked. By chemically blocking the hormones in my body, for the first time in over a decade my head felt clear. All of a sudden we knew that we had found our answer.
Over time, we learned that I had been battling Premenstrual Dysphoric Disorder (PMDD) and that my body is severely intolerant to both the hormones oestrogen and progesterone. When these hormones are in my system, they make me seriously mentally unwell and this was the rollercoaster that I had been unknowingly living throughout the last eleven years. Although it was something invisible to the naked eye, my mind had essentially been being poisoned by my body from the day that my periods first began. With this revelation we finally had evidence that this was not all ‘in my head’ and I finally knew that this was not all my fault. During the months that followed, with continued blocking of my hormones anorexia disappeared completely, along with the deep depressions and overwhelming fear that had plagued me for so long. I remember thinking THIS is how it feels to be normal.
During the last few years, my life has been completely unrecognisable. With continued treatment, I have made the most amazing new friends and I have embarked on an ambitious career; something that I had never dared to dream was possible. I have both laughed and loved more in the last month alone, than in the previous eleven years combined. I have been finally living and it has been more than I ever hoped for. I would love to say that this was the happy ending to my story, but sadly we are not quite there yet. The reality is that the trauma from those many years of misdiagnosis will probably never leave me. I have difficult flashbacks to the years spent on the brink and my body continues to bear the scars of a decade of self-harm. After being lost for so long, I have had to rapidly learn who I am again, whilst attempting to catch up with all of the life stages that I have missed.
Devastatingly, after being given these few beautiful years of freedom from my symptoms, my treatment has recently stopped working. For me, there is now no cure other than the drastic surgery of a full hysterectomy and oophorectomy; something that at the age of only twenty-eight is hard for me to bear. Removing my ovaries and therefore surgically preventing hormone production in my body is now the only way forward to manage my condition. This means that as I approach my twenty-ninth birthday, I have to make a drastic decision between my future fertility and my life. I have to make a choice between staying alive and ever holding my own child in my arms. After everything that I have been through, this feels so cruelly unfair.
Compounding this situation is the realisation of how little understanding there currently is surrounding PMDD. From medical professionals to the general public, awareness is limited and I am continually facing opinions that never fail to astound me in their ignorance. PMDD is a physical illness and just like any other, my symptoms have both a biological origin and cure. It is not ‘all in my head’ and having a hysterectomy at twenty-eight is not a choice, yet medical professionals routinely break my heart with their cynicism and ill-informed judgments. I should not have to fight for understanding for a medical condition and I should not have to fight for treatment, however, this is where I continually find myself.
It is at times like these when the world feels stacked against me once again, that I have to remind myself that I am alive, that I finally know what I am battling and that there is an end. Despite everything that I have been through, I am so unbelievably grateful to be one of the lucky ones; one of the women who made it to receiving a correct diagnosis of PMDD. My story so very nearly had a different ending and undoubtedly does for many other women whose symptoms are misdiagnosed as mental illness. I am so incredibly indebted to those individuals who worked tirelessly to keep me on this earth and for my family for never letting me go. Next year is my big 3-0. My only wish is for this birthday to be characterised by being the strongest version of myself so far; the birthday where I begin a decade of making new memories for the milestones that we never expected me to reach.