Hello fellow carers. Every so often during writing blogs off my carer forums, I tend to write about the carer experience. In this particular blog I want to write about stigma and make unpaid carers aware of what stigma is and the damage it can do.
Just to make things clear that when I talk about carers, I am not talking about NHS workers or nurses. I am talking about people who care for someone severely unwell in the family, or perhaps caring for a close friend. I am not saying that some in the NHS are not caring for someone in the family, but I want to cast the net out and bring in those whose identity is blurred away.
This blog site focuses a lot on mental health carers, so I do not want to stray too far from them. As a reminder a mental health carer is someone looking after a person with mental health needs. This could be a form of psychosis, bipolar, depression, Post-traumatic stress, OCD and so on.
Unfortunately with mental illness, stigma does strike at the heart of those affected. The stigma can affect both carer and ‘cared for’. Many may ask what is stigma?
The Shame
It does not take long to google the word ‘stigma’ and see it linked to mental illness. Stigma can involve many things, but often stigma is linked to mental illness.
Basically stigma is Fear and anxiety about a disease that can lead to negative attitudes and beliefs toward a person and their characteristics. This can be down to others not understanding mental illness be it a lack of education, awareness, fear or worst of all ridicule. With MH stigma, suffers of mental illness begin to lose friends, family support and can be ostracized from the community.
Embed from Getty ImagesThe stigma often can hit the sufferers family and close relationships. Some in the family may stay clear from the situation leaving the most concerned to take on the carer role. Some in that family might even actively practice stigma and even then the sufferer of the illness might be stigmatised through their own illness as they will not engage with health and social care services.
Unfortunately it can be that the mental illness itself can blur how the sufferer understands what is effecting them. It is as if the mental illness makes it harder for the person to come to terms with what they are going through.
When I was caring for my mother, I noticed over the years how many friends withered away, even some neighbours kept their distance. I myself experienced a lot of stigma as some laughed at me when they realised I was caring for someone with mental illness. During the early years my mother became sectioned often as she struggled to cope with medication and support. Many would see her taking to the hospital by the police or ambulance and would gossip.
The continued experiences of watching my mother go through the rotating door of the mental health inpatient ward took its toll and I got tired of trying to educate and explain to others on reducing negative views. At one point, even I kept away from my mother as she took out her frustrations on me.
With no where to turn, I withdrew into myself and battled stress, depression and anxiety and mental illness can be catching. With a strong carer focus, I managed to look after myself and spare enough energy to continue to look after my mother.
Would not have it any other way
Looking back at it, I can be proud as I would often hear many let that stigma drive away those close to them. I stood by my mother until the very end as a son should do, although I am aware that not all carers can do this and there is no shame in walking away, because sometimes health and social care cannot provide that support.
There was always a risk that the stigma and lack of support would push me to becoming the next mental health patient, but I had to be strong. I had to keep working to help in bills, providing care and support, holding the family together and setting an example to fellow MH carers.
Embed from Getty ImagesI will not lie, the experience of care has worn me down and I do not get too close to others. There are some things I cannot explain as yet because it will bring painful memories to the surface. I can say this though that time and patience does help.
If I had to go through it all again, I probably would and I most likely would have done quite a few things differently.
There is no shame
As an educational part of this blog post, I would like to mention there is no shame in caring for someone with mental illness. It does of course depend how unwell they are and you as a carer will need support. It is advisable get as much support from health services, friends and family.
Embed from Getty ImagesYou of course will have to be strong when stigma comes your way, many just do not understand. Many do not realize that mental illness is very common as we all suffer from anxiety, stress, anger and depression. It does not take long to notice that a tip over the edge can lead the sufferer to severe mental illness.
I certainly have more patience with those who have mental illness and refuse to laugh and joke when I see someone in the street battling the illness. It can happen to any of us or those we are close to. There is no shame in mental illness and with the corona virus epidemic, society will have to get used to mental health because there will be a lot more to deal with.
Welcome to the month of June joint Southwark and Lambeth MH carers forum. I usually run this forum at the Maudsley hospital. As a reminder the carer forums are aimed at carers who care for someone with a mental health need. I run around 5 carer groups each month and most of the groups work towards engagement, co-production, involvement, education and querying about mental health and social care services.
Welcome to the June update of the Lewisham mental health carers forum. A forum aimed at unpaid carers supporting someone close who has a mental illness. This is one of the 4 carer groups that I run per month. In attendance were our usual carer members along with representatives from Lewisham Healthwatch. The speakers from South London & Maudsley NHS trust being psychiatric Liaison staff and the lead from SLaM Patient Advice Liaison service. We were also joined by SLaMs involvement lead for Lewisham and Croydon, plus we were also joined by the Mental Health Lead of Lewisham and Greenwich Hospital trust.
Welcome to the May update of my Lewisham BAME mental health carers forum. This is one of my 5 carer groups that focuses on the experiences of BAME carers and sometimes BAME groups suffering mental ill health. I usually run this forum from the Lewisham Branch of Bromley, Lewisham & Greenwich MIND. Due to CoronaVirus I have moved the forum online via ZOOM.
Hello everyone and fellow carers. Just a quick blog post now that Carers Week has ended. For those who do not know about Carers Week, basically it is an awareness event that looks to raise the awareness of unpaid carers throughout the week of June 8th – 14th.
Welcome to the April update of the Southwark Mental Health Carers forum. Just a short intro about the forum. The forum is aimed at carers who care for someone with a mental illness. I obviously try to aim the forum at carers based in Southwark, but we often ask for engagement with MH, health services, commissioners and social services.
Welcome to a quick update from the Southwark Mental Health carers forum. I know I have not been blogging for around a month, but I have recently suffered a bereavement. It has taken a fair bit of energy to do much, but I am quite proud to be able to continue to run the forums even though I have to take time and look after myself.
Welcome to the February update of the Lewisham BAME Mental Health carers forum. The forum is aimed at black Afo-Caribbean, Asian and other minorities carers in the borough of Lewisham, however I am happy for other carers in surrounding boroughs to attend. The forum is run from Bromley, Lewisham and Greenwich Mind centre under the arm of Community Wellbeing.
Welcome to the first Lewisham Mental Health carer forum of the year. Before I do a brief update of how the forum went, I must say thank you to Carers Lewisham for hosting the forum for almost 6 years. As a carer I often mention to fellow carers that we must support our carer centres. Without carer centers then it is harder to keep the profile of carers at local and community level. Carers need that safe space, access to activities and a place for support. I am aware that so many carer centers are struggling due to lack funds, staff and resources, but my respect for the ones that keep fighting for carers will continue.
A Caring Mind 