They say the road to recovery can be a long one and I know the true meaning of those words, often the road is long and bumpy, you can take a few wrong turns and even be directed the wrong way. What’s important is you don’t give up but you carry on until you get to where you want to be.
After believing I was dying of some horrible illness for many months I now sat in disbelief as the nurse explained to me it was panic attacks that had turned me from a bright, bubbly girl into a shadow of the person I used to be. I felt like a hollow shell thin and weak, with dark circled eyes, an empty feeling inside.
The lovely nurse at accident and emergency had stayed with me until I was able to go home but she assured me that the mental health crisis team would call in the morning and I would be offered help.
The wait for the call from the crisis team felt like forever and every time the phone rang I nearly jumped out of my skin. When finally the call came I was near desperation, however, it wasn’t to be the call I had hoped for. The lady explained that although my doctor was in their area, I was not and although I was only a street away from the border they wouldn’t be able to visit me. They suggested instead that I visit my GP to see if he could help me or refer me on. So I made an appointment for that week and spoke to my GP. I explained again about how I was feeling and my latest visit to A&E, he said he would try to refer me to the mental health service to see what support they could offer me.
I struggled on in the weeks that followed, still unable to eat, feeling constantly sick and having major panic attacks. I struggled with being left alone and fear seemed my daily companion. The flashbacks I experienced after the birth of my first daughter felt stronger than ever and combined with the panic attacks I really felt like if I didn’t get support soon I didn’t know how I would be able to carry on. The feelings were overwhelming.
Finally, I had a letter and was told that a Community Psychiatric Nurse (CPN) in my area had been assigned to me, and that she would do a home visit and an assessment to see what support I needed. So I eagerly waited for the CPN to come, I desperately wanted to start the road back to health and sort out these panic attacks for me and my family.
Sometimes you just know that you’re not going to find the answers you need and that’s how I felt with the very first visit of the CPN.
The CPN was an older lady with a very strong character, she asked lots of questions and I felt like I was under interrogation, it was hard to express my feelings and I felt she cut me off when I tried to explain how I was feeling. I explained how bad my panic attacks were and how they lasted for hours, how then I would have fits and eventually pass out and end up in A&E. I explained I was scared to be alone for fear of the attacks and that I couldn’t go out or stand to have anyone visit our home. The CPN however was only concerned with my weight and I found so many of the questions related to it. I was asked about food and how I felt about it, while my other issues were brushed off. Whenever I tried to explain my flashbacks or worries about my health she wasn’t listening.
On her next visit a week later she said that after reviewing her assessment she felt I had secret anorexia and she had arranged for a doctor to visit to discuss medication. I was in shock! Anorexia? How had she come to this conclusion? I explained that I didn’t have anorexia at all that I loved food but just couldn’t eat because I felt sick all the time and that I absolutely hated feeling or being sick. She just smiled and said it was ok, that she knew I would deny it but in time I would be able to admit to myself that I was a sufferer and accept help, but for now, I needed to see the doctor and take medication. I was young and vulnerable, I was ill and completely confused by what was happening, after all, wasn’t she the expert? Maybe I did have anorexia and truly didn’t know it. I felt even more depressed and scared, and my anxiety and panic attacks escalated. This didn’t feel like help at all as it was making me worse.
A week later the doctor visited me and suggested that I take Prozac to lift me, I felt so ill that I would have tried anything to make the feelings go away. The drug was horrendous, it made me sicker than ever, my mind felt like it was in a thick fog, my anxiety was worse and I barely knew what day it was. After three days I told my husband that I couldn’t stand it anymore and I stopped them.
I felt that I was no good to my family anymore just a burden spoiling everything.
I tried again to carry on for a few weeks but felt worse than ever. After another major panic attack that lasted for over 7 hours, I said I could no longer go on, I wanted to make it all stop, I really felt like I was dying a slow torturous death. I felt that I was no good to my family anymore just a burden, spoiling everything. The next day we decided on drastic action and went to the local mental health hospital and asked if we could see the doctor who had been out to see me at home. The staff said he wasn’t available but agreed for me to see the doctor on call. I looked around me at the hospital and I was terrified I would be made to stay and not be able to go home to my beautiful babies. At that point, I found some strength deep down and I vowed that if I was allowed home I would fight this, I would get better and I would be ok. The doctor on call saw me and asked some questions, he was kind and listened to me. He said I had struggled on for too long and just needed a little help to get out of the hole I had slipped into and that he didn’t think under any circumstances I have anorexia. He gave me a different drug that he said would calm me and help my stomach settle. I took the tablets and I went home, this was my chance to fight.
I took the tablets as he had said and slept on and off for three days, my body felt like it needed to sleep to draw strength and recover. I felt calmer and my appetite returned and I was able to eat again for the first time in months. Within a few weeks, I felt so much better, I was calmer, able to eat and being able to sleep was helping me get stronger day by day. I didn’t see the CPN much after this and to be honest I was glad, because I was eating and my weight started to increase I think she believed I was working my ‘anorexia’ out. It pains me to this day that she couldn’t see what was really the issue and never took the time to listen. I often wonder how many others she had not listened to.
I had appointments with a doctor at the mental health hospital for the next year and I was always surprised at how little a check they kept on me. I would always just be asked if I was ok and if I was managing, which I was, but beyond that no discussion ever took place on why I had panic attacks or why the issue had started in the first place. I remember saying after one visit how easy it was to say you were fine and no one questioned it. No one ever asked me if I had had anything traumatic happen but just kept saying it was general anxiety, that lots of people get and I began to believe I had general anxiety too.
I decided to try to learn more about anxiety and panic attacks. I knew that medication was helping me but it felt like a sticking plaster to help improve symptoms but not the cure. I was hoping to only be on them for a year so I brought and borrowed books to research as much as I could. I learnt about the flight or fight reflex and how our mind works. I read all about the techniques to help manage/control my feelings and the attacks and then set about trying everything I could to get better. I found that I did improve but still, no matter what I did certain things like being alone at night, the children being ill or hospital appointments and going away from home still triggered my attacks.
After about 12 months I came off my medication and was discharged from mental health services. I continued doing all I could to practice what I was learning but found that I would do well for a while and then have relapses. I continued to seek help from my GP and he encouraged me to do an anxiety management course at my local health centre. After attending for a few weeks I realised it was information and techniques I was already doing and even the instructor said to me I was too informed for the course and most likely knew more about it than he did! I found that I became increasingly despondent, although I felt I was doing everything possible to rid myself of these attacks, it still had a hold on me and was preventing me from living my life. I again saw the GP and asked about other support I could access, he suggested counselling which I readily accepted. My first call was a telephone assessment and then I waited a few months till I was offered an appointment.
Finding help is hard
When you have mental health issues asking for help is hard and attending appointments is hard so I was a complete wreck when it came time for my counselling appointment. The lady I saw was lovely and we talked about many things in my life and childhood and I also talked about my birth experience. I felt things were going well and I realised that I had been putting a lot of pressure on myself to be perfect. After only a few sessions, however, she told me she was leaving and I would have a new lady. Again I was nervous and it was difficult to open up again to someone new. Things however didn’t go as well. My sessions consisted of being told to forget the past, that life was for living and I was missing out, she wouldn’t discuss my birth or attacks but instead insisted we only be positive and discuss positive things. The lowest point and my final session was when she told me that maybe I liked having panic attacks in my subconscious as it was a form of control and way to access attention. This set me back massively, to be told I liked having these attacks when I was working so hard to get well and that I was doing it for attention sent my head reeling. I went home and cried for my family and for myself. I now began to question if I was the cause of all the struggles and that I was in fact causing myself and my children harm and again the attacks began to escalate.
After a few weeks, I decided that whether or not it was true I would beat this for my beautiful children. I brought more books and learnt more techniques. Despite how hard it was I started to push myself. I was offered to train with a charity as an infant feeding support worker something I was so passionate about and though it was a massive step I completed my training and began doing volunteer work. When a job became available as a paid support worker I applied, I was terrified and never believed I would get the job but I did! It took all my strength to believe I could do it and my biggest challenge was when I realised my work would include working in the hospital on the same ward I had my birth trauma.
The first day in the hospital I shook the whole time, I had no idea what the staff must have thought, I kept looking at the room where I had been after my birth and felt sick, dizzy and panicked. But I used my techniques and ploughed on through the day. I can’t begin to say how proud I was driving home that I had done it. As the weeks passed it got easier and the feelings began to pass and I was beside myself with joy that I was doing something I truly loved.
When the chance came along two years later to train as a doula I jumped at the chance and this was a massive turning point. As I sat with all the other women talking about birth I realised just how much my birth had affected me. When we went around the room discussing our births and it came to me I couldn’t speak, after what felt like hours I managed to tell my story. As I recalled my experience there were gasps around the room and after I had finished I burst into tears, I was shaking and everyone came to me and hugged me. It was the first time I truly spoke about what had happened and I felt relief but also support and comfort from those around me. As the weeks went by I learnt so much and I can honestly say it was healing in a way I never expected. I started to feel strongly that women deserved better care in birth and after. I also realised how much I had been affected by my birth and that I wanted help with my feelings and what I had been through.
I decided to reach out to see if I could access counselling privately and found a charity that did one-to-one counselling, the waiting list was long but I decided it was worth the wait. When the appointment finally came it was again difficult to go but on my first appointment, I knew I would be ok. The lady I saw was amazing, so kind and gentle. She listened so closely and asked only a few questions. I felt like everything came pouring out like someone had turned on a tap and I couldn’t stop the flow. I told her all about my birth and my care in the hospital, my feelings, flashbacks and panic attacks, the things that triggered me and everything in between. I felt like I was purging my soul and it felt good. I started to feel stronger and I began to realise that there wasn’t anything wrong with me as a person but only in what I had been through. Together we worked out that my fear of nighttime came from the times in the hospital when I felt most scared, alone and abandoned, being unable to care for my baby and the poor care I had received which had caused me such distress. We saw how the feelings of my panic attacks mimicked the same feelings I had had when I was lying in the hospital seriously ill dying from a postpartum haemorrhage. The beating heart, feeling sick, and weak with pins and needles and how I associated this with dying. I began with her help to see that my triggers related to things I had experienced in the days and weeks after my birth and finally everything started to make sense including things that had happened to me in my childhood too. As my sessions grew to an end my counsellor suggested I ask for CBT from my GP to see if this would help me process my feelings of my birth. So I made another appointment.
I discussed with my GP about my counselling and my birth and asked if I could have CBT to help with my feelings and again I was referred to mental health services. The appointment came and I went along again terrified but full of hope. After a chat with the CBT counsellor, I was told that there was no specific CBT for birth-related issues available. After two sessions she said that I already knew everything she would have discussed with me that I was already doing all the techniques that they normally use, that I was very self-aware and that she felt she couldn’t help me. I felt so despondent, old familiar feelings returned as to why it wasn’t working for me and why I was still being gripped by these attacks. I felt alone, odd and a failure, Even family began to question why I was still ‘suffering’ as if it was my fault. I made excuses for things I felt I couldn’t do and felt I was living half a life.
I continued to struggle on for the next few years and found ways to manage my attacks. I found the big attacks always happened at night so if I could go to sleep the attacks would stop. So I would take a sedative and work through the attacks until it calmed me and I was able to go to sleep. I had conquered some of the issues but others remained. I still hated night times especially if I was alone, I still struggled if anyone became ill. If I myself became ill it would trigger massive attacks. My periods still caused me issues, as did going to the hospital for appointments and staying away from home was impossible without having an attack. We barely went on holidays as a family and although I was managing day to day I wanted more for my family and myself.
I carried on again doing all I could and I decided that if I tried to fight my fears maybe this would help so we planned a holiday with my husband’s family. It was three days before we went and I had a major panic attack I took my sedative as I always did but it didn’t work, the attack progressed and felt worse than I had ever known. The attacks continued the whole night, I felt like I was going mad. At 4 am we went to A&E something I hadn’t done for years. The doctors handed me a paper bag and asked me to breathe into it, of course, this didn’t work as it never had and I could feel that the staff were becoming frustrated with me which only escalated the attacks. Finally, a lovely doctor came to see me and gave me medication to stop the vomiting plus a drug to calm me down and stop the fits, and I finally managed to go home.
He told me I should stop being selfish, realise what my ‘behaviour’ was doing to my family and get myself ‘sorted’
I managed the week on holiday but it was a struggle but I returned home happy that I had done it. However, the strain took its toll and a week later I was back in A&E worse than ever. I can honestly say that I had never experienced anything like it and would have done anything to make it stop. One of the nurses suggested she thought I was maybe having a ‘manic episode’ but to wait to see the doctor. The doctor I saw was awful and after hours and hours finally gave me a very strong medication to try to stop the attack and calm me. When my husband left the room to get the car the doctor leaned in close to me and looking me in the eye, he told me I should stop being selfish, realise what my ‘behaviour’ was doing to my family and get myself ‘sorted out’, I felt like I had been stabbed in the chest with a knife.
We went home and I slept the whole next day, every time I opened my eyes I could see the doctor’s face and hear his words and I felt like I was falling into a pit of despair. Why didn’t everyone see that I was doing everything I could to sort this but it just wasn’t working?
By the end of the week, I decided I again would seek help and again went to see my G.P. In the surgery I broke down in tears and told him about my visits to A&E and what the nurse had said about maybe it had a manic episode. This seemed to have a different reaction with him and he said he would refer me to the psychiatric liaison service.
An appointment came for me a few weeks later and I was absolutely terrified. I went to the appointment and again poured out my history. After the assessment, the nurse said I needed to see a psychiatrist and have a proper assessment. I actually felt relief and I finally felt this time I was being listened to.
My appointment came and I went along to the mental health hospital to see the psychiatrist. I was literally shaking as I was waiting to be called. When I went in the psychiatrist introduced herself and asked me to explain what had been happening so I did, from the beginning in as much detail as I could, I even took videos of my attacks for her to see.
The psychiatrist sat looking at me I could see she had tears in her eyes, she apologised for all of my suffering, my lack of help and support and that it had taken so long for me to get to this point. She explained that I had been suffering from Post-traumatic stress disorder (PTSD) after my birth. She went on to say that because it had been missed and left untreated it had now also become health anxiety and panic disorder and that the attacks I experienced were most likely neurological caused by my body not being able to cope with the severity of the attacks.
I honestly can’t put into words what that appointment meant to me. Finally, someone listened and told me what was wrong. To have a diagnosis after so many years was like a massive weight had been lifted. I wasn’t weak, useless, a bad mother or wife or daughter but a victim of a terrible trauma and finally everything fell into place. While I was told that there was no actual help for PTSD available to access, I left with a care plan, a referral for specialist CBT and a referral to neurology. I cried all the way home, I cried the whole night and most of the next day the relief was so immense.
While I waited for the many appointments I started to research PTSD and birth trauma and cried as I read exactly what I suffered for years. I felt like all my answers were finally being answered. I found the Birth Trauma Association and joined their online support group and I finally started to feel I understood what I had been going through for so many years. I found women just like me and the support was immense. Finally, people who understood. As I read their many experiences tears would roll down my face as I realised I indeed had PTSD. I didn’t feel ashamed or weak with them and I found that this helped me like nothing else had. I learned about other treatments for PTSD such as EDMR and that you could get better and be well again.
So I started my CBT and this time it helped, knowing what was causing my attacks enabled us to directly work on the feelings it was creating and I finally felt like I was getting a hold of things. I was able to address my fears and see why they were there, where they had come from and separate them from the reality of now.
I was told that EDMR wasn’t available but nevertheless went from strength to strength. I felt anger that I went without help for many years. The more I researched the more I came to see that my symptoms were clear signs of PTSD and perinatal anxiety. How so many health professionals could have missed the clear signs is beyond me, it meant a lot of suffering not only for me but my family.
The road to recovery has been a long one and has been bumpy at times. I found great help, support and comfort from not only a proper diagnosis but also peer support and online help. I decided that I too wanted to help others firstly by raising awareness as I never want anyone to go through what I have. Birth trauma does happen and its effects can be long lasting. Health professionals aren’t really trained or equipped to spot birth trauma or PTSD or to support those affected and that needs to change. The biggest thing that partners, family, friends, and health professionals can do is LISTEN. Giving a woman your time, making her feel safe and secure and letting her pour out her heart can make all the difference. PTSD from birth trauma does happen but we can make sure that we try to give the best care we can and provide support when it’s needed most.
My fight for help led me to setting up Unfold Your Wings to provide information, support but also hope to others. By hearing our stories we help others feel less alone and show them that they can recover, heal and find the person they once were.