Trying to sleep – or support someone else to sleep – and struggling to do so can be very lonely.

Difficult thoughts and feelings are often also more present at night as there are less distractions than during the day.

Sleep can be a ‘thorny problem’ for many people impacted by rare conditions.

Causes of sleep problems

Being able to understand more about the causes behind poor sleep is the first step in being able to develop strategies to address and manage it.

There can be lots of different causes of sleep problems. Sometimes difficulties can also overlap.

Sleep might be difficult because of:

• pain or discomfort
• the impact of a rare condition itself
• fear of a health crisis
• worry, anxiety or feeling low
• the effect of treatments or medications
• hormones
• stress
• difficult, or traumatic, life events
• excitement
• environmental factors like noise or temperature
• someone you care for having disturbed or poor sleep
• alcohol or drug use (including caffeine)

The causes of sleep difficulties are not always easy to diagnose. A ‘multi-factor’ approach can often be the most effective way to optimise the chance of sleep, or at least ‘deep rest.’

What happens when we don’t get enough sleep?

It is when we are asleep that our body undertakes cell repair and our mind processes the day’s events.

Sleep is important for our immune system functioning, hormone regulation, and blood pressure.

Poor quality, or lack of sleep can also impact on our mood and energy levels more generally. We are all usually more irritable, or cope less well after just one bad night’s sleep. If this happens regularly, we can start to feel very low, anxious or even despairing.

Occasional poor sleep is manageable for a short – or even medium – period. Our minds and bodies are both very resilient. However, if it continues for any length of time it can start to impact on both physical and mental wellbeing.

It is therefore important to develop strategies to both:

• optimise the possibility of sleep or deep rest
• manage the practical and emotional impact of lack of sleep

We provide some ideas below.

Practical aids

There are also some other practical aids that can help promote sleep such as:

• pillows, bolsters or adjustable beds to help you find the most comfortable or pain-free sleep position
• sleep masks
• ear plugs
• hot water bottles, or microwaveable wheat-bags
• temperature-regulating bedding
• white noise machines, or smartphone Apps

Know that night-time waking is common for you?

One of the most difficult things about night waking is it can feel lonely, and sometimes upsetting, to be unable to sleep.

Although very understandable, try not to become angry or upset about being awake.

Accept that it is happening, and choose instead what you need to do to look after yourself through the experience. This will both help it feel more bearable and optimise the chance of you being able to fall back to sleep (or at least get some rest.)

If you, or the person you care for, wake frequently it can help to have some ‘comfort’ aids readily to hand.

These might include :

• change of clothes or bedding to address sweating or incontinence
• downloaded audiobook, book (with headphones if necessary)
• flask of warm tea by the bed (without caffeine)
• relaxation podcast or guided visualisation
• biscuit, or small snack if you are often hungry at night
• practise a mindfulness based progressive muscle relaxation
• a pen and note-pad to jot down any ideas, or worries

Herbal sleep aids including the hormone ‘melatonin’ have become more widely promoted in recent years, such as ‘gummies.’  It is important to discuss with your GP or rare condition doctor first before trying any alternative sleep aids in order to discuss any known risks – including whether it will interfere with any medication you are taking.

Do you feel that lack of sleep is ‘just how it is?’

For a variety of reasons, it might feel like a lack of sleep as ‘just how it is.’

You might have got so used to a certain level of fatigue or exhaustion that you have given up thinking it could be any different.

This could be the case. However, it can be helpful to review this belief from time-to-time and see if there is anything that could help. This might mean trying out some new strategies, or talking it over with your healthcare provider.

We all cope better with life’s ups and downs – including the impact of a rare condition – after a good night’s sleep.

If you are regularly caring for someone who does not sleep, finding ways to manage your own energy levels and sleep is also important.

As well as resting during the day (if you can) consider:

• Asking relatives/friends to do a ‘night-shift’ for you.
• Helping your family member to be as independent as possible with their night-waking eg safety aids such as nightlights, grab-bars etc, agreed coping strategies, their own comfort and mobility aids.
• Agreed terms on which they can wake or call you (this will depend on someone’s age or mental capacity).
• Taking turns with a partner (if a child is wakeful) to do alternate nights, or ‘up to midnight’ and ‘after midnight’ shifts.
• Short naps in the day if you can. Try not to do these too often or too late as they can start to interfere with your own capacity to fall asleep later on.
• Overnight or short-term respite care. This is not always easy to get funding for, but the Carers Trust (below) have more information.

Sleep difficulties in children and young people

Having a child who struggles to sleep, or sleep at night, is exhausting for everyone.

There are a number of rare conditions that impact on the capacity to fall or stay asleep at night, and/or cause excessive sleepiness in the day.

Children’s sleep can also be impacted by all of the same causes as in adults above.

Children impacted by rare conditions (whether their own, or a family member) may also have more sleep difficulties as part of living with that impact.

They may also carry more worry about their own health, or that of a family member. They may be coping with difficult feelings, perhaps about looking different, or other aspects of living with a rare condition.

Being in hospital can be very disruptive to sleep both before, during and after. Re-establishing bed-time routines back at home is important for everyone’s overall wellbeing. It’s good to do this gradually, over time.

Children with autism, or other sensory/processing difficulties very commonly struggle with sleep. This might be ongoing, or more occasionally.

Children who are facing or experiencing bereavement (particularly the loss of a parent) commonly experience difficulties with sleep. It is not uncommon for them not to want to sleep alone, or they may want to ‘check on you’ more for a period at night-time. This is not unusual behaviour, even for teenagers and young adults.

Nightmares, night terrors and sleep walking/talking

These can be distressing for you as a parent. They occur more around times of change, including developmental.

They can also be a sign of emotional difficulties, perhaps as a response to changes or tensions at home, worry and anxiety, bereavement (expected or current) or difficulties at school or in friendships.

Winston’s Wish has some useful information about supporting your child during and after a nightmare. The information is relevant not just for bereaved children.

Not wanting to go to bed or sleep alone?

There may be a particular aspect of your child’s rare condition that makes this more difficult, but many children experience periods of this.

It can be very frustrating for you as a parent. This is especially if your child had previously been able to sleep alone, but no longer seems able to.

Trying to work out what is causing your child to not want to sleep alone can help you begin to address it.

Remember your child is not trying to be deliberately ‘naughty’.

Not being able to sleep alone can be caused by a number of factors. It could be worry or anxiety about being on their own or ‘feeling lonely’. It could also be as a result of pain or illness, environmental factors eg heat, cold, noise etc, or after a difficult experience such as a bereavement or medical procedure.

How to work towards your child sleeping (more) alone will depend on a number of factors, including their:

• developmental age
• neuro-cognitive capacity, or effect of any sensory disorders
• rare condition’s impact and how it affects their capacity for sleep generally
• ‘risk to life’ at night eg breathing disorders, seizures etc
• medications or treatments (include those that need administering through the night, or that affect sleep)
• mobility
• emotional wellbeing