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Caring through stigma

 

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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.

Depressed woman sitting on stairs

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.

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The 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.

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I 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.

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You 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.

Collaboration with Jae Marie from Mental Lifestyle

Welcome back to another blog post from Matthew Mckenzie, a carer from South East London. My website helps raise mental health awareness from a carers angle, but I feel my site is versatile enough to try cover other experiences. This is why this particular blog post is a collaboration with Jae Marie from Mental Lifestyle.

We both wanted to raise the subject of “why it is important to raise mental health awareness”.

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