I feel worried. Worried, because there seems to be somewhat of a perinatal bandwagon lately. Where ever you look, there are articles, stories being shared and people discussing perinatal mental health, its loud, in your face, singing and dancing. This is wonderful and definitely needed. Awareness around perinatal mental health is so important and so is helping to reduce stigma, so that families feel they can reach out for support. Many feel that shouting out about their perinatal mental health struggles, that have consumed them and their life, is needed in order to put perinatal mental health on the map, myself included. Even well known soap operas have been raising awareness of the the real life battle.
For many speaking out may have taken years, it has taken courage, bravery and strength to put out there, in the public arena, their story, bear for all to see, not knowing how others would react. In many areas healthcare professionals are trying to set up pathways to help families access support, which is most definitely a good step. So why am I worried? Isn’t it a good thing that so much attention is being focused on perinatal mental health?
My worry is that while many are jumping on the bandwagon and there are articles and stories everywhere, what is there in the way of real support, treatment and understanding of perinatal mental health for those that are bravely speaking out or looking for help?
Recently there seems to be many avenues that promise help, treatment or cures for Perinatal PND, PTSD, anxiety etc, from mindfulness, to relaxation classes to wellbeing courses. The question is, are these really able to offer the support needed, especially for serious perinatal mental health conditions? Are those conducting these classes trained in perinatal mental health or even at least have an understanding of perinatal mental health?
I attended a meeting recently where it was being discussed what was available to refer women to who were currently pregnant who had a previous history of mental health issues or were currently struggling with symptoms of perinatal mental health. Many of the healthcare professions there admitted they knew little about perinatal mental health disorders and how they presented but also where to send women for help. I am lucky because I work in a service offering this very much needed support. Other areas however admitted that for those with low level anxiety or low mood, birth trauma of loss of a baby they had little in place. As a consequence women were being sent to a local wellbeing class which talked about connecting, giving, learning, taking notice and keeping active. I had already been trained to deliver this and knew the concepts surrounding the classes. As we know all the things mentioned are basic things that do indeed help with general wellbeing. Connecting with others prevents us feeling isolated and helps us gain support. Giving to others of course helps our wellbeing and helps us keep our focus off ourselves. Learning enhances self esteem and allows for setting future goals. Taking notice is reminiscent of mindfulness and living in the moment. Then as we know there is much to be gained both mentally and physically from exercise. All this is helpful to us all, but what of someone struggling with perinatal mental health?
While many of these basic things indeed can help improve wellbeing it is important that those struggling with perinatal mental health get the specialist support they need. It’s hard to take notice and live in the moment if you are terrified of life with a new baby, and hard to keep active if you have just had a c-section. Finding time to just eat or have a shower can feel impossible, let alone learn something new. For a mother who is struggling with perinatal OCD or anxiety trying to connect with others can present a real issue. While the basis of these remain good, to a mother struggling to just care for her baby, not being able to reach out to connect, or give to others, could make her feel like she is somehow a failure, not able to do the things required. Focusing on one’s general wellbeing is something we can all try to do but when struggling with serious perinatal mental health more is needed.
Knowing what life is like with a new baby as well as trying to manage perinatal mental health is hard to comprehend. For myself I know that with a tiny premature baby and being very ill myself due to the complications from her birth I just about managed each day. I was scared of ‘germs’ and didn’t want anyone else touching my baby. I hated weight clinics and any appointments for myself or my baby. Yet no one understood this and often I was told I was a neurotic mother that worried too much.
What of those who were delivering the wellbeing classes. They openly admitted they knew very little on perinatal mental health, both being young with no children and with only very basic training. It was mentioned that they often saw women that they knew needed more specialist help and felt out of their depth in being able to offer help. That also they had no way that mothers could attend and bring their babies.
So this leads me on to my next worry, what about those offering treatment, or help for perinatal mental health?
For those offering treatment for perinatal mental health the question we need to ask is, are they specifically trained to offer perinatal mental health treatment and do they have an understanding of perinatal mental health? These are both important because when perinatal mental health isn’t supported properly, a wrong diagnosis is given or treatment is given by ones not properly trained, the results can be very damaging to those who are looking to them for support. It can mean a delay in getting the correct treatment, or even make a perinatal mental health condition worse.
Recently it was said to me that “with mindfulness, someone can bounce back from birth trauma”. Then I was sent a few articles on mindfulness and told to read them. As a mindfulness practitioner im aware that it is indeed helpful in many areas of life. However it isn’t a treatment that will enable anyone who has suffered birth trauma to “bounce back”. In fact anyone who has suffered birth trauma will tell you that you do not ‘bounce back’ even with all the right support.
While this may have been just a poor choice of words it’s worrying that they were saying it was being used to ‘treat’ birth trauma or/and PTSD. Birth trauma and PTSD require more than practicing mindfulness but treatment that is evidence based such as counselling and CBT or EDMR. This of course goes for all perinatal mental health.
Sometimes the language used, the way perinatal mental health is talked about, will show if the person has an understanding of the conditions and its effects. In conversation someone expressed to me that they didn’t think women wanted help with their mental health because whenever they tried to suggest being referred to mental health services, they would say no. I explored with the person the language used, the fear that often accompanies perinatal mental health, the worry about what a so called ‘referral’ may bring and why women may refuse. Lack of understanding and training can cause even those who have responsibility to care for women in the perinatal period to understand the true implications of suffering. I have lost count of the conversations I have had with those who are working in mental health services who show no understanding of how it differs in pregnancy or the postnatal period. Especially around babyloss where support can be more damaging with advice to ‘move on’, to focus on having a healthy baby, or just be positive!
But does it really matter? After all some help is better than nothing.
It really does matter, seeing people not trained in perinatal mental health, not having a correct diagnosis and not having the correct treatment meant that I struggled for many years. I was told that ‘life was worth living and I was missing out’. That what I had been through didn’t matter, ‘because it was in the past now and I should move on’. That I was ‘alive and so was my baby and that was what mattered’. I was told ‘I didn’t try hard enough to learn to relax, that I worried too much, that I didn’t breathe correctly and that all I needed to do was be more positive’. I was handed paper bags to breathe into when I was having what I know now were actually non-epileptic fits, and then berated when the paper bag didn’t magically work. I was told I was in denial about what ‘they’ thought was wrong with me and told by a doctor as he leaned right into my face ‘to go sort myself out, because my behaviour wasn’t fair on my husband’.
I do not doubt that those involved in my care thought they were doing the best they could, but without an understanding of perinatal mental health, without the correct training I was left without the correct diagnosis, treatment and support. This was just as damaging as the PTSD itself and resulted in self doubt, low self-esteem, a rise in fear, anxiety, feelings of failure and the belief that my illness was all my fault, because I didn’t know how to breathe into a paper bag correctly or think more positively. None of this helped me to recover. I wish that this was only my experience but unfortunately this is what I hear so often by many other families.
So what can we do? Should we join the bandwagon?
Firstly if you are suffering with perinatal mental health it is important you get the right diagnosis. It is also important that you get the right treatment.
If you are in doubt or don’t feel the help you are getting is working, talk to your family and those over your care. You may not be listened to, or you may have to shout more loudly, but you matter and its important you are heard and listened to. You know you best!
Always check that any avenues you go to for treatment are fully trained in perinatal mental health and fully understand how it affects those that suffer, anyone can say they are a form of therapist and offer all kinds of ‘treatments’, but do your research and check what really is being offered.
If there isn’t anything in your area look nationally. Yes this isn’t ideal, in fact it’s very unfair, but you and your recovery matters. There are many wonderful organisations doing wonderful work to support families. There are also many wonderful people trying to change things and learn all they can about perinatal mental health by engaging with those with lived in experience.
What if you are seeking to offer treatment etc for perinatal mental health? Before you consider jumping aboard think about what you are offering and what is the motive? Are you offering support, or claiming to offer a cure? Do you fully understand perinatal mental health, how it affects families or have lived in experience? Are you trained in perinatal mental health and it’s different disorders? Also while this may be hard to think on, what are your motives? Is it income, personal recognition or a genuine desire to want to help others and find the treatment they need and deserve? Remembering that what we do, say and how we treat others has the potential to heal or cause more harm, will help us to reflect on the services we offer.
Perinatal mental health isn’t the latest fad or in-thing. It’s not a bandwagon that we can jump on for the journey, it is real people, with real lives who are struggling for answers, support and treatment that will help them to cope and recover.
Peer support from those with lived in experience is beyond value and gives much in the way of support. Sadly this is very limited and the services offering it are in short supply. Even whether it is available it can be meet with some doubt. Therapy yes is needed but so is support from those who have lived through perinatal mental health and recovered.
Often left without anywhere to send families for support, getting the right help can be like finding a needle in a haystack. Which is why, while there is much noise around perinatal mental health at the moment and raising awareness is so important, what also matters is providing people and services that can offer treatments that mean the road to recover for many can begin. So if there is a mental health bandwagon and your thinking of jumping a board think about what your bringing with you. Yes let’s make lots of noise, lets get perinatal mental health noticed so that those who have the power to bring about change know what is needed. But also lets make sure that this bandwagons greatest achievement isn’t just a lot of noise, but real services, for real people, in need of real specialist support.