I sat in the chair feeling numb, was I really in denial? I didn’t think I was, but then I wasn’t the expert. The Community psychiatric nurse (CPN) in front of me wore an expression mixed with pity and frustration. I had been ill now for a while, but I had no idea why, the weight was falling from my body, terror stalked me like an ever-present foe and even just stepping outside the door was difficult. Yes, I had been struggling to eat, yes, I felt sick all the time and to manage a sandwich was hard work. Yet to hear that I had anorexia, to be told I was in denial and that the only way to get well was to accept it and try to overcome it, left me speechless.
My head was so confused, I couldn’t really take it all in. I had pleaded and tried to argue that I actually hated being sick, so much so, that my feeling nauseous was now turning into a phobia and each day on waking as the feeling in the pit of my stomach returned, my anxiety was growing higher than ever. But the CPN just shook her head and again said I needed to accept her assessment. She had spoken to one of the doctors at the hospital and they had suggested I take Prozac to help. So with the handing over of a prescription and a stern look the CPN left.
Despair wasn’t really the word to describe my feelings, was it true that all my suffering was anorexia and I was in denial? To me, it seemed the most impossible thing, yet I was now left questioning my sanity, I really must be going mad, because I really couldn’t accept that this was what was wrong with me. Was it really anorexia that was waking me up at night, causing panic, terror, nightmares and uncontrollable shaking? Was it really the cause of my fear, worry and constant hyper-vigilance? Why was it making me pace up and down at night, like a poison creeping through my veins, stripping me of peace and sleep? How was anorexia causing the blackouts, the fits and panic attacks that lasted for hours? Surely instead of hating the feeling deep in the pit of my stomach, the aching pain and constant burning I should welcome it and be glad that food was no longer my friend. Why then was I desperate to eat, why did I hate the ravaged body I saw in the mirror? I could see the bones that I tried to hide with my clothes, I knew I was weak and sickly but I did not wish this. I wanted to be well, to be healthy, to be free of the terror and the fear and to be able to go out and be with my family.
But…… this CPN was the expert, wasn’t she? She was the one who knew, that could see what I couldn’t? Yet deep down I doubted because she hadn’t listened, she hadn’t wanted to know what I was really struggling with, the second I mentioned I was struggling to eat nothing else mattered, everything then on was about food or my relationship with it. I wasn’t asked about my worries, or what my nightmares were about or why I was scared and struggling.
So in desperation, I collected the prescription and I started the tablets. If this is what I needed to do to get well I would do it.
Only they didn’t help. Instead, I became a zombie, I felt like my mind was in a fog, heavy and unrelenting. I felt like my body and my mind was numb but inside I was screaming only I couldn’t let it out. The terror and fear remained, as for the sickness it was worse, now I could not eat at all and barely drink. The despair was deeper and I felt like I was slipping away and I welcomed it. It was like being in a pit and not being able to climb out, no matter how hard I tried. I felt like I had sunk to my knees and all was lost, I could no longer go on and all I wanted was peace, peace from the pain, the terror, the nightmares, the pacing and the panic. Everyone would be better off without me, what did I have to give, to offer? The darkness consumed me and that night too weak to pace, too weak to cope the panic took over like never before and all I wanted was relief, no matter how, just for everything to stop.
The next day we drove to the local mental health hospital and begged to be seen. As I sat in the waiting room I looked around and I wondered how It had come to this. I looked at the locked doors and barred windows, but I didn’t need to be locked away I just needed someone to help me. I looked at my husband with tears in my eyes and begged him not to leave me there. The doctor called me in, a big burly man, with a gentle voice and kind eyes. I told him about how I was feeling and he told me to stop the prozac and instead gave me another drug. He told me to take it at night and see how I got on. So I did and I slept for nearly a week and then I ate, I ate like I had been starved of food my whole life, the nausea passed and slowly I started to feel better.
I knew why I was suffering and I knew what I could do to get well
I have been given various reasons over the years for why I was suffering, from general anxiety to panic disorder. I was offered counselling that consisted of being told ‘life is is for living’ and I was missing out, to CBT that I was told to not bother attending because I knew more than the person giving it. I sat and filled out assessments but I didn’t show on any of the criteria needed so it was said I was actually fine. It took me 10 years to get a proper diagnosis, to finally be told that I had PTSD and that this was a result of the trauma of my first daughter’s birth.
What is the impact on individuals who are misdiagnosed?
Well not only do you struggle to access the correct treatment and therapies, but this can result in actually having treatment that can make them worse, (such as with the counselling I received), but it’s what it does to you inside, the person suffering. Not having a proper diagnosis, not knowing what was wrong, not being understood and listened to, or being able to assess support only makes what you are struggling with worse. It made me believe I was weak for not getting better, why did everyone else do CBT and then be ok but it did not work for me? I felt like I was an oddball, alone and strange. It can be like you are the only person in the whole world to be enduring this and it makes you question why. It fed my feelings of self-doubt, worthlessness and despair. It truly made me believe that I shouldn’t be here, that those I loved were better off without me burdening their lives and dragging them into this pit with me.
It also made me doubt my own mind, doubt what I was feeling, what I believed, what had happened to me and how that had affected me. It damaged my relationships with others and it scarred my life. It took away my dignity and left me with little respect and also made others question if I really wanted to get better.
Having the wrong diagnosis, or not having one at all, matters because we are talking about not a word we write on a form to describe someone, but a living, breathing, person that is going through hell, that is a part of a family, who also are being affected.
While we hear lots of talk about depression and anxiety, there are many mental health issues. They are all just as serious and just as damaging. It is so important that those who have the responsibility to diagnose, treat and care for those suffering are trained in all mental health issues so individuals can get the right help. We also need ways to assess for things like PTSD and OCD etc, because these do not always show up on the assessments used as standard in mental health. Especially in my many years of supporting families, I see the impact of trauma be it childhood trauma or other trauma and how this is linked to mental health.
Most of all though we need to listen.
Listen to those suffering and build a picture of them as a real person and what is happening and maybe what has happened to them. When we see the person and we truly value that they are suffering, when we look beyond the obvious and try to give the right care, we can set that person on the road to recovery.
I can honestly say that in all the years that I was suffering, and of all the people I came into contact with, only one person truly listened and saw ME, not as a person with mental health issues but as a person with feelings and pain, that needed help. I’ll be forever grateful to that one psychiatrist because giving me that correct diagnosis meant everything. It meant I finally knew what was wrong, I knew why I was suffering and I knew what I could do to get well. It also meant that what had happened to me was finally acknowledged and it proved I wasn’t weak or not trying to get well but instead strong and just in need of the right support.
Yes, the right diagnosis meant hope and hope is stronger than fear, hope is stronger than self-doubt, and hope is stronger than despair. Yes, Hope is what saved me and what helped me get through, hope was given to me with the right diagnosis because someone listened and heard me, not only with their ears but also their heart. That alone gives me hope that one day everyone will be able to get the right help and support they need.
