Monthly Archives: September 2016
Chronic illness has secrets
Chronic illness has secrets. These secrets often don’t get aired by the daylight. Most people with a chronic illness or rare disease struggle with daily life. Those struggles are usually hidden from the world. Popular psychology says that a positive attitude helps matters. It is true, being optimistic does help many things. Let us be honest though. The British bull dog spirit often falls way short of helping those with chronic illness cope their new imposed reality. At times the maxim can be simply patronising.
The secrets of chronic or rare disease
1. People with chronic illness are always trying to adjust to uncertainty about or change in their physical state. The sword of Damocles that hangs with an unknown prognosis causes anxiety. Individuals are often unable to talk about these fears. They are scared of being labelled moaners or hypochondriacs.
2. Sufferers of chronic illness feel very alone. This is also true in rare disease. The medical profession frequently does not understand their condition because it is so rare. The lack of knowledge by professionals about a rare disease usually results in the person researching all they can about their illness. This is not a fixation but an attempt to maintain some control, a control that may even save their life. An awareness that there is a likelihood that you will have to advocate for yourself when vulnerable during a crisis in order to get correct treatment is scary.
3. People with chronic illness often try to micro manage life. These real fears about a health emergency can make the person stop doing normal things. This attempt to reduce the possibility of crisis can lead to further shrinking of life and a growing feeling of personal isolation.
4. Sufferers know that there is absolutely no certainty that the task or activity they did easily today will be able to be repeated tomorrow. The body is in charge and it can be mean abuser of the spirit.
5. People with chronic illness often feel angry, guilty or sad. This is because their hopeful plans made weeks in advance may need to be cancelled at the last moment because of a surge in symptoms. This weakens the individual’s support network further as ‘friends’ often don’t get it. Unwell people begin to be seen as unreliable rather than ill.
6. They may not get the support they need because they look good on the outside when there is an invisible but major inferno going on inside.
If you are battling a chronic illness or rare disease. It’s a pretty smart idea to give yourself a gentle pat on the back. Remember you are not alone, that you are a fighter. Lastly, know that there are many others there in solidarity with you.
In the UK we are beginning to hear more about a concept known as ‘Bird’s Nest Parenting’. This practice became popular in the US and in Australia, where it has also been called ‘satellite parenting’, and it’s thought to originate from a US custody hearing in 2000. In the court case, a Virginia judge ruled that a divorcing couple’s two children should stay in the family home, and the parents should take it in turns to look after them.
Bird’s Nest Parenting is also creeping into TV dramas and pop culture, as The Telegraph noted earlier this year.
What is Bird’s Nest Parenting?
Bird’s Nest Parenting is an arrangement where the children remain in the family home after their parents have split up. Mum and Dad each take turns in living with them, and the parents move between the home and their own separate accommodation.
The belief is that the children will experience less disruption and anxiety if they stay in the family home. In practice, Mum and Dad might make an arrangement to stay in the house on alternate weeks. During this period, the resident parent provides all the care to their children.
Advocates of this method view the arrangement as a tool that can provide more stability to the children. In theory, the children do not have the stress of living in two places, moving their stuff around and perhaps getting upset. The goal of a Bird’s Nest Agreement is to cause less stress; less stress means the children will be less affected by their parents separation. This may be true up to a point. While there are clear advantages in a Bird’s Nest Agreement, there are also disadvantages that need to be examined.
The cons are that it can be very hard for the adults to find closure in their own relationship when they continue to inhabit space that was once a shared home. This often causes stress and animosity. This is distress the children will pick up on.
There are also temptations to use the ex-partner’s possessions as if they were still together. This usually causes resentment, and the children may become unintentional pawns. They can often be questioned by the other parent: ‘Did Mum or Dad do this or that’ or ‘Did Mum or Dad use this or that’. This is not intended to harm their children, but it does.
A further problem is that as the children are always present in the home they may develop a ‘pseudo adult’ role. This means they may assume more responsibility for the running of the house than they should. This may also include keeping the adults informed about the other partner’s movements. This loads the stress that the agreement was supposed to prevent. Extra distress may lead to emotional difficulties.
Should You Try Bird’s Nest Parenting?
Bird’s Nest Parenting may have a benefit in the early days after a separation – in the short term, it may prevent the children from experiencing too much upheaval. Children do need time to adjust to their parents’ separation.
In the longer term, it may be more beneficial for children to spend time with both parents in separate houses, having their own room and cherished items in each house. Children will adapt to this well, and usually without psychological difficulty.
The simple fact is: most children cope well after their parent’s separation. What distinguishes the copers from the children who feel acute distress is this: the children who fare well are the ones whose parents are able to put aside their own feelings of hate and resentment towards their former partner.
Written by Dr Chrissie Tizzard, Chartered Consultant Psychologist . Dr Tizzard works with adults, children and families and is an experienced expert witness in criminal and family law. www.ctpsy.co.uk
Sleep Problems and ASD
Sleep problems are an all too common headache for parents of a child with ASD. A lack of ZZZ’s in any child usually cause distress. When a child has a diagnosis of ASD the impact of poor sleep is usually much more of a problem.
If your child has autism, you may have noticed that when they go through a period of sleep difficulty, their symptoms often get worse. During these times, you may have also found that the trusted strategies which usually work well to manage ASD are much reduced. Sometimes, they don’t seem to work at all.
Experts from the University of Missouri believe that a simple course of CBT may be really helpful in breaking free from the horror of sleepless nights. They want to ease the misery of the ramped up behavioural issues that usually appear the next day.
Christina McCrae the lead researcher in the study maintains that CBT is the most effective way of improving sleep patterns in children with ASD. Normally this involves keeping a sleep diary and working with the therapist to root out the issues that are interfering with sleep.
Despite this knowledge the researchers feel there is still some uncertainty about how exactly to achieve more benefit through the use of CBT. They are eager to maximise results.
To better understand this process McCrae and her colleagues are conducting a research study through the research core at the MU Thompson Centre for Autism and Neurodevelopmental disorders with children aged between 6 and 12 years of age.
This is an exciting project and one that holds much promise. We eagerly look forward to reviewing their publicised findings and hopefully incorportating them into our existing CBT protocol.
Written by Christine Tizzard Psychology
We are an national and independent psychology provider based in Chichester on the south coast. www. cpsy.co.uk We also provide independent autism assessments and work collaboratively with parents and school to ensure that each child’s needs are recognised and fully facilitated.