A parent with a mental illness? Yes!

I started writing this piece a while ago but recent events have caused me to re think things.

I am a mum to my son and have the misfortune of suffering from a long standing mental illness. Over the years I have heard, read and had to experience a lot of judgments and misconceptions around being a parent with an illness.
Frustratingly the judgments didn’t just come from fellow parents in the play ground but more often than not from professionals, medical staff.
Collectively it was becoming apparent to myself that a chuck of society had this belief that you couldn’t be a parent or at least a “good enough” one when battling with a mental illness. That you couldn’t function, care, love or keep them safe and that you were not just a “risk” to yourself but subsequently to them too.
Due to my own diagnoses of ’emotionally unstable disorder’ (aka borderline personality disorder) it’s been sadly my experience that a common belief is that I can’t handle or contain my emotions therefore how can I possibly provide an emotionally stable home for my son? I could give countless examples of such hurtful comments, judgments and accusations. I could even quote many TV shows, books and articles that all give such a negative view of parents suffering with a mental illness but there are too many and well it’s not my intention to highlight all the wrongful discrimination.

So what’s changed my view?
I am currently pregnant with my second child and therefore have come into contact with many different services including and more importantly, medical staff. Now it shouldn’t have been but due to previous experiences I was somewhat apprehensive of people knowing I had a mental illness which only added to all the many anxieties expectant mothers face in pregnancy.
From the beginning I knew anxieties, fears and hormones were all part of pregnancy for most women but I had to admit having an existing illness made things a little more difficult day to day therefore I had to go against all my apprehensions and be open with my midwife.
I couldn’t have been more surprised by her level of understanding and acceptance. As she rolled up my sleeves to reveal multiple scars and take blood I cringed in anticipation of the judgments and questions that would follow. Instead she held my hand and comforted and reassured me.

From that appointment on I have begun to realise that people are far more accepting than I ever thought and it’s in all fairness just a small portion of society that seem to be uneducated in mental health. I have also much to my relief become aware of the many services in Leeds that support parents with mental illness, depression and anxiety. With specialised midwives, groups and even a mother and baby unit. Services from the NSPCC and NHS are seeing parents with such difficulties require a little extra support and not an immediate referral to social care, and that with their help and advice parents can not only manage their difficulties, but be “good enough” parents.

I believe being a parent full stop is a difficult, challenging, anxiety provoking and stressful experience for even the sanest of parents without being judged for admitting so.
For me personally having a mental illness has taught me so much more about myself and about being a parent. It has provided me with a greater understanding of my emotions and how they can effect those around me but most importantly it’s given me a wonderful insight into my sons emotional well-being. I believe I’m more attuned to how things in his childhood can later effect him emotionally and how important it is to validate his emotions allowing him to express himself as he feels, without judgement or criticism.
My son i believe is better educated in our very diverse society and more open minded and understanding of others difficulties and struggles.
I wish in many ways I didn’t have such an illness to contend with but in regards to me as a parent I am quite thankful, as I truly believe it has made me a much more sensitive parent to his needs and experiences.

It’s disheartening to know their are still many people out there that hold such a negative view of parents with a mental illness but things are changing and services seem to be moving forward. More is being done to help, understand and support parents with their individual needs than ever before. Perceptions in society are changing too as more parents make a stand that they are not just good enough parents but are exceptional, amazing, wonderful, strong, fantastic parents who battle harder than most every day with their own difficulties to ensure their children have the most loving, stable, supportive, caring, secure homes any parent can provide.
Parents with a mental illness are just like any other parent across the globe, their children are their number one priority and they will strive like any other to provide all their child/children needs to grow up happy and healthy. We just fight a little harder.

Are you a parent struggling with a mental illness? If so have you found services to be helpful, accepting and supportive?

Does anyone happen to know of groups in and around Leeds specialised for parents struggling?

Or have you experienced people’s negativity and misconceptions?

I’d love to hear I’m not the only one that feels strongly about changing societies views on mental illness.

Thanks for reading, Maria.

Pathways to Recovery: Service User & Carer led research, a carers view

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Service User Led Research ‘Is there a pathway to recovery through care coordination?’ was presented at a recent CPAA event  – click here to read more about this event. This emancipatory research was designed and conducted by people with lived experience of mental health difficulties and carers.

This research supports recovery in a number of ways – for example, personal recovery and wellbeing; hope, inspiration and aspiration for others; contributing to the evidence base for recovery. This is a positive story that should be shared…… Caroline Kemp (no relation 🙂 ) agreed to write about her experience as a carer & researcher; and shares a poem about coding…….

Pathways to Recovery..how and why I got involved..

The last few years have been very rewarding for me…the path has been very stimulating and has been a big learning curve.

My background has been in mental health as I have cared for my daughter for over 16 years. She has enduring and severe mental health problems..her path has been very tough and witnessing this battle is also equally as tough..too much anxiety and panic. .and also the fact that no meds seemed to be of any help..just lots of dreadful side effects…as a mum and a Carer you expect or try to fix things..I always thought things would be better if only we could find the right meds…I tried to read as much as I could so I could help..I thought in the early days I would fix it..and my daughter would not suffer needlessly for years…

When I first heard of the research into pathways to recovery through care coordination I felt strongly I wanted to be a part in it..( I had had plenty of experience of Care Coordination..not all positive ) The reasons were mixed..on one hand they were purely selfish..if there was any hope of finding recovery I had to know it.. I wanted to have some hope…the other reason was to make things better for everyone in anguish and torment..I think this is also why people do research in the first place..to make things better.. I had seen too many people abandoned on the acute wards without a single visitor.  Also our research group were chosen because of their expertise and life experience..there was no formal academic requirement..another strength was we were a mix of service users, Carers and professionals.  We had multiple perspectives and this made out research even better science. Also I knew from the way this research was done we would play a full part in doing it..at all levels ..it would not be a tick box exercise.

At Northumbria we were given excellent training on research up to PhD level ..so this gave our group the confidence to do all the interviews..Carers  interviewing Carers and S U interviewing S U…in all the interviews this has made a difference to our data as people related to us and disclosed more of their true feelings..perhaps this was because we had shared journeys and paths. We developed questionnaires, piloted them, and refined them.

After hearing all these stories I cannot help being amazed at human resilience in the face of terrible tough times and challenges..

Not only did we interview but we also did data analysis ..I never thought I would be able to do this but after all our training I had the confidence to sign up for it..it certainly sharpened our interviewing skills and kept us on task on answering the research project question..not just collecting hours of data. I also learned a whole new vocabulary …Nvivo and nodes…parent ones too..

I have been part of this research for over three years now and I have had many highlights..

What I loved was meeting every Wednesday and analysing the data; keeping a reflective diary and writing poems around recovery..I have been published in an American journal; doing many Carer interviews and sharing people’s life stories; being asked to present at conferences, INVOLVE and to the Trust; talking to students at Northumbria on our research; I also did a short video diary for NIHR ( National Institute of Health Research ) this has been used to train students too; and have been interviewed twice on the radio! At the INVOLVE conference our group was selected to be in a film also. It has been very exciting. We have been brave enough to step outside of our comfort zone.. And it has been well worth it. It has been part of our recovery too..that is being engaged in something meaningful and the added bonus of being for the benefit of others.

Presenting at St James

At the moment we are preparing our next three conferences on the findings to the trust and developing a toolkit. Also we have been asked to write about our journey and how we did it..not only academic papers but also a book..so we have a lot to do.

But this is how I like it and I think I speak for others in the group too..we will be sad when it ends..however I think when you do become involved it always leads to many other things..jobs for some, enhanced skills..now we are a trained group of researchers and can offer our own training and experience to others…

I am glad I have been valued as a Carer and service users in the group are also glad that their mental health experiences have been recognised and valued and able to be of benefit to others on the pathway to recovery.

It gave me hope things could be different and I would encourage everyone to become involved in research ..you do not have to have a degree..just valuable life experience. And empathy ..and a willingness to work and share together and learn from each other. It was great being part of a team.

Caroline Kemp

Meeting

You are invited to attend a meeting on the 20th November to hear more about the Planning Care Network.

There are 2 venues:

Sycamore Suite at Bootham Park Hospital, York 10.00 – 12.00

Becklin Centre Training Room 3, Leeds 14.00 – 16.00

It would be great to see you there, but if you can’t attend that’s ok; just check back here to see whats going on.

Donna