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1. BPD, COVID-19 and Me
2. Experts by experience: the effects of isolation during COVID-19 pandemic

1. BPD, COVID-19 and Me

Published in RETHINK

https://www.rethink.org/news-and-stories/blogs/2020/08/bpd-covid-19-and-me/

Sue Wheatcroft is a campaigner and group coordinator who lives with Borderline Personality Disorder (BPD). Winner of our prestigious Janey Antoniou award in 2019, she’s made huge inroads in challenging stigma and creating change for people living with mental illness. In this blog, she explains what it is like living with BPD, and what impact the Covid-19 pandemic can have on the way we all look at the condition.

With so many deaths, and key workers putting their lives at risk, I feel a little self-indulgent talking about my problems, but everything is relative, right? I am a full-time carer for my wife; I also have a diagnosis of Borderline Personality Disorder (BPD). Some of you will have a good insight of what this is, others will have never heard of it and, rather worryingly, some people will only know the negative aspects of the condition and believe the hype and stigma caused by misunderstanding, fear and ignorance.

This is not the place to discuss BPD in detail; it’s a big subject and deserves greater time. What I can say is that we who have the condition, struggle to manage our emotions. ‘We all do, sometimes’, you may think, but how many of you go from passive to aggressive at the flick of a switch? A seemingly innocuous comment from someone we care about can be misinterpreted or exaggerated, bringing about an immediate wish to die. It is extreme and it is serious. One in ten people with BPD end their own lives.

• We who have the condition, struggle to manage our emotions. ‘We all do, sometimes’, you may think, but how many of you go from passive to aggressive at the flick of a switch?

There are many studies currently being carried out on the societal effects of the Coronavirus outbreak, and what it could mean for us all moving forward. There is a lot of things that need to be considered within that: domestic abuse & homelessness among other things. These are not new problems!

The issue that has come to the fore more prominently, is mental health. Over the past few years, depression has received increasing attention although, sadly, not so much the less common issues, such as BPD. Hopefully, that is about to change. It is expected by many, that the heroic actions by health professionals, and others, in caring for the more serious COVID-19 patients, will result in an increase in cases of PTSD. Both BPD and PTSD are trauma related conditions and BPD is known by many as Complex-PTSD. Undoubtedly, there will be help for COVID-19 heroes if they need it, and rightly so. Hopefully, if we manage to raise awareness and understanding of BPD, some of that help might trickle down to those with the condition.

• The reason I am writing this, is because it is time for people with BPD to get the help they need.

The reason I am writing this, is because it is time for people with BPD to get the help they need. I run support groups for those with the condition, and their families and support workers. There is a serious lack of statutory help and the little there is, has been put on hold due to COVID-19. Now, with the lockdown and social distancing measures, these support groups have also been put on hold, leaving people alone with their difficulties. Not everyone can discuss their feelings on zoom! For anyone who thinks that BPD is ‘just bad behaviour’, imagine the following scenario:

Female, aged 7, subjected to physical, sexual, and emotional abuse by father, and abandoned periodically by mother. Aged 14-16, runs away, police take her back, telling her she is a nuisance; takes overdose, spends several days in A&E, told she is a bad person for worrying her parents; bullied at regular school for having nervous tics; attends special school but is still bullied; admitted to psychiatric ward but is traumatised by seeing an elderly man being aggressively forced-fed by two male nurses; aged 16, discharged from adolescent mental health services. Leaves home with violent boyfriend…

This is not an isolated case, by any means, but should people like this be blamed for developing BPD… for struggling with their emotions and all the other distressing effects of the condition? Can you see the similarities between this and PTSD? Isn’t it time to stop the stigma of BPD and introduce a little compassion? If you are a health worker, prison officer, police officer or probation officer, please take some time to understand this condition. Seventy per-cent of people in prison have some form of personality disorder and BPD is the most prevalent among women. I know from experience, that this is an avoidable outcome, but without a better understanding and more help, it will not change.

Both Rethink Mental Illness and Mind have produced very good information booklets on BPD. If you would like to know more about our support groups, please contact me at derbyshireborderlinepd@gmail.com

2. Experts by experience: the effects of isolation during COVID-19 pandemic

Article: Experts by experience: the effects of isolation during COVID-19 pandemic • WEPHREN

It has been said that self-isolation due to the threat of Coronavirus is ‘just like being in prison’. As someone who has experienced both, I feel well-placed to say that, although there are certain similarities, it is not the same!

Let’s ignore the fact that prisoners are currently experiencing their own lockdown, being confined to their cell 23 hours per day, with only one hour to shower and exercise. When people say it’s like being in prison, they most likely mean prison on a ‘normal’ day, i.e., before the advent of the Coronavirus.

One of the main issues of isolation, whether in prison or in one’s own home, is boredom. Those in prison who still have their privileges (any ‘bad’ behaviour can lead to a loss of these) will have a TV in their cell, and books from the library or sent in by friends/family. Many prison wings have a snooker table. Most prisoners have a job or education classes to keep themselves busy four and a half days a week, and there is a gym. Largely due to bad press, prisons are seen as easy, but think about the monotony of having this small set of activities, every week, month or perhaps even years, broken up only by medical appointments and the occasional visit. Then add to this the fact that staff shortages often lead to more in-cell time than is recommended or even humane!

Those on lockdown in the community may also become bored, depending on their particular circumstances. For example, most will be with their own family; those who can afford it are able to order in items to keep themselves busy; they will have no restrictions on online activities, and the hour of exercise can take place in a different area (close to home) each day – as opposed to the same prison exercise yard.

Another problem of isolation is loneliness, although this is not so straight forward. People in prison can be lonely because they have very little contact with their friends and loved ones. Those who do not make friends easily will feel this loneliness even more. For others, prison offers a community spirit that many prisoners crave. They may become institutionalised and, if they do not have a healthy support system in the community, they expect to, and do, return to prison soon after release.

Loneliness in the community, again, tends to depend largely on the individuals’ situation before the lockdown. Those who lived with others continue to do so. Although they may miss certain people, they are not totally alone (although it is possible to be lonely in a crowd if there is no personal connection). However, for those who lived alone and continue to do so, the loneliness may have worsened, especially if they previously had the occasional visit from friends, family members, support workers etc.

The issue that is most common to both people in prison and under community lockdown, is fear and anxiety. In prison, people can live in fear of other prisoners, prison officers, their potential sentence (if on remand) and their physical and mental health. For these people, the sense of being alone, without easy access to information and support, will make that fear/anxiety more extreme.

Those self-isolating in the community due to the Coronavirus will, naturally, be in fear for their own health and that of others. They may even be in fear of loss of life. However, although this fear might be stronger than that felt by prisoners (in a non-Coronavirus environment), there is more access to information and support in the community. In addition, contact with loved ones outside the home, whether by phone or social media, may act as a source of comfort.

All these issues: boredom, loneliness, fear and anxiety, are detrimental to an individual’s mental health. The vast majority of people in prison have some kind of mental health problem which is, more often than not, exacerbated by the stresses of living in prison. Although not as prevalent in the community, most individuals with mental illness whether in prison or community, have suffered from the lack of services caused by under-funding and, to some extent, by a certain amount of apathy and/or stigma among commissioners and the general public.

Regardless of whether self-isolation due to the coronavirus is ‘the same as being in prison’, if the general public think it is, then it may have a positive effect on prison welfare. To some extent, public opinion dictates government policy and it is thought by many that prisoners have a ‘cushy’ life, rather than suffering for their crimes. In law, punishment should be the separation from the rest of society, and not the conditions under which they are made to live. With this in mind, members of the public might realise just how ‘punishing’ it is to be kept away from loved ones; knowing that you cannot be there for them if they need you; the distressing effect of no physical contact with, say, children and/or grandchildren; fear of what could happen next; and the uncertainty of whether life will ever be ‘normal’ again.

The circumstances in which we find ourselves at the moment are unprecedented but appear to have brought out the best in people. Life has slowed down considerably, giving them time to re-evaluate what is important. Perhaps this can be capitalised upon when reviewing prison reform.

Sue Wheatcroft is Expert by Experience at Revolving Doors Agency in England (LINK http://www.revolving-doors.org.uk/). She is also a Research Assistant in the national Cancer Care in Prison Study (How is cancer care best provided to patients in English prisons? Assessing the disease burden in the prison population, experiences of diagnosis, treatment and support, and of receiving and providing cancer care LINK: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/165253/#/)