A lot of the advice here might feel obvious. You may have heard a lot of it before and some of it may be challenging to put – or keep – in place because of the impact of your rare condition.   

However, working towards and holding in mind ‘the basics’ is still really important. They provide the foundation for your physical and mental health overall. 

Supportive relationships – who and where

Quality relationships are one of the key supports for both physical and mental health. We often under-estimate how important it is to have people around who ‘get us’, are supportive, and you can have a laugh – or a cry – with.

Having just 1 or 2 people in your life who you feel cared about by and connected to, makes all the difference. These might be friends or family members, but could be people from other parts of your life too.

Living with a rare condition can sometimes be isolating. Finding people to connect to (in person or online) might take time.

Sources of support and connection might include:

• Local community groups who provide ‘targeted’ support, for example,  to parents, carers, living with various types of disabilities.
• Religious or faith-based communities, some of whom can also offer very practical support for families and individuals under pressure.
• Befriending groups and apps can also be helpful ways to find others to meet up with, or chat online, including if you have moved to a new area.
• Interactive online games played with others can also be a good experience if you have become more isolated for any reason, or are restricted to home or hospital for any period.

Condition-specific organisations can also be a great source of information, support and advice. Many are small, friendly and welcoming and you can be involved as little or as much as you. Even just knowing they are there can feel very supportive.

You could also try joining clubs or groups to take part in activities you enjoy and meet other people with similar interests. This could be sport, book groups, online gaming/interest groups, music, games or gardening.  Libraries or local council websites often have lists of these in your area.

We have more suggestions in our sources of support section.

Good symptom control

One of the most under-acknowledged aspects of living with a rare condition is how much energy can go into managing or coping with symptoms, or treatment side-effects. Symptoms that feel unpredictable, exhausting or hard to manage can significantly affect your mental health.

Tools, strategies or aids may be in place to help you manage your rare condition but they also take time and energy to keep ‘on top of’. Some coping strategies or treatment regimes might also be frustrating, interfere with your daily life, or may even be painful to do. Sometimes, they might ‘slip’, get forgotten – or you just don’t want to do them. That’s ok.  Take a deep breath, don’t be hard on yourself. Start again with what you know will help in the longer-term.

I know I can’t eat certain things without pain. Then I do, then I’m in pain . It’s not like I forget as such, its sort of ‘ wanting to be normal’!

Online tools, apps and aids

There are also a growing number of online tools, apps and aids to help you manage your rare condition more simply. Ask your rare condition community (if you have one) or clinic, what is available.

These might include: 

• setting ‘phone reminders/alarms’ for certain activities or tasks
• practical tips, strategies and techniques for managing certain symptoms like pain, fatigue or difficult behaviour
• ‘food tracker’ apps
• ‘patient passports’ to help you manage appointments and access results

If you are struggling with a particular symptom, do let your rare condition doctor or nurse know. Even if the reason for it is unclear, it is part of their role to help you find ways of coping, manage it differently, or sign-post you to the support you might need.

Don’t give up.

Sleep and rest

Getting enough sleep and rest may be compromised for all sorts of reasons. This might include the impact of hormones, developmental issues, pain, caring responsibilities, or worry.

Lack of sleep or rest can be a big factor in poor mental (and physical) wellbeing for both people affected by rare conditions and their carers.

If poor sleep is a particular symptom of the condition you or your child are impacted by, ask your doctor for help in addressing this aspect.  They may be able to suggest particular strategies or approaches that can help.

If you are a carer supporting someone who does not sleep well, ask for help from others to help you rest – or catch up on sleep – during the day. Exploring ‘short-break’ care can also help you cope, and sometimes overnight care might be available. You might also find our page on coping with sleep difficulties, including in children, helpful.

I steal ‘pockets of time’ in my day, because I don’t get much sleep. I’ll ‘switch off’ for 15 mins under a blanket, earphones in.I think it keeps me sane to be honest.

Food and nutrition

This might be compromised for you or someone you care about for all sorts of reasons. This might be ongoing, or from time-to-time. Examples include needing to follow a restricted diet, post-surgery, treatment side-effects, increased/lack of appetite, or a reduced capacity to absorb certain nutrients, vitamins or minerals because of your rare condition.

Emotions & food

There is also a link between emotions and food. If you are anxious or stressed, you might ‘comfort eat’ or stop eating altogether. Or maybe you have become anxious about eating because of how you look or sound when you do, or for fear of pain or tummy upsets.

A lot of socialising also happens around food. If you have difficulties or worries about food or eating (including how you look, or the need to use certain aids) it might also impact on your confidence or desire to socialise too. Try to share this with someone you feel close to, and ask for ‘moral support’ at social events.

Some rare conditions or treatments can also make it harder to absorb certain nutrients, including those that help stabilise mood or energy. If this is the case, it can be helpful to talk to a dietician , and/or a psychologist or counsellor. You can ask your GP or rare-condition doctor for a referral.

My son was just eating the same ‘safe’ foods, because he was so worried about pain. The dietician helped both him and I build up confidence, and broaden out what he would eat

Exercise and Movement

Even if you have restricted mobility, moving your body as best you can, in whatever ways you can, can help improve your mood. It can aid digestion, support muscle tone or flexibility, and help release ‘feel-good hormones’.

‘My ‘freedom’ space is walking the dogs on my own. I can walk the speed I like, the direction I like, the length I like, and say what I like as I know it remains in confidence! That and the fresh air is ‘cleansing’ for the day ahead.’

If you have very restricted movement for any reason, or movement is painful, your doctor or medical team may be able to refer you for either Occupational Therapist or Physiotherapy.  There may be (more) exercises or aids that can help.

Exercise can also be good for managing feelings too – boxing, hitting a ball or running can all help with anger of frustration for example. Finding exercise you enjoy can all be part of making ‘time for you’. Many outdoor spaces are also now much more friendly to different abilities, including neurodiversity. Gentle exercise like chair yoga can be very helpful if you are recovering from surgery, have limited range of movement, coping with fatigue or are worried about pain. Children often enjoy it too.

The Activity Alliance offer help and offer advice on adapting physical/sporting activities if you have a particular disability, or need.

Routines

When at least some things in life (however small) are predictable, it helps us feel more relaxed and secure. Routines also reduce the exhaustion of decision-making.

They are useful for:

• • early mornings (getting up, getting ready)
  • bedtimes ( wind-down activities, bath-time, reading or audio-books)
  • weekends (activities or ‘to do’ tasks)
  • getting to and from regular hospital visits (routes, snack-bags and waiting room activities, ‘treats’ for post-appointment, favourite evening meal)

Financial security

Worries about money, or losing your home, all impact significantly on mental health.

You may also have worries associated with your work (including how supportive your employer is, or how much work you are able to take on) or the ‘hidden costs’ of living with a rare condition.

Hidden costs can include the cost of travelling to and from appointments, special diets or adaptive aids. You might also have concerns about how to manage in the future should you need time off work for treatment or care of a family member, or if your condition gets worse.

Talking to someone about money worries can help you plan ahead, and also be sure that you are getting all the financial help you are entitled to. Your rare disease organisation may also be able to offer advice, or have resources about this.

Sources of support include: 

Citizens Advice Bureaux for a wide range of help and advice regarding benefits, debt, employment , immigration, legal problems, and health/disability rights.

Shelter for help with a wide range of housing problems.

Feeling ‘safe’ and respected

The attitudes and behaviour of those around us impact profoundly on our mental health and wellbeing.

If you feel unsafe because of the environment or society in which you are living ( perhaps because of your gender, appearance, difference, skin colour, culture, religious beliefs or sexual orientation) these can all erode your mental wellbeing.

There are lots of support and campaign groups to help you feel less alone and more empowered in both challenging and coping with stigma and prejudice. Use the internet or local libraries to search out ones that might be right for you.

What works for you?

There is not ‘one size fits all’ for supporting personal mental health and wellbeing. We are all individuals!

It starts with thinking about what ‘works for you’. There are several really helpful tools available now for starting to work out what you need, what self-care you can put in place, and what additional support you might need and is available.

Talk to your doctor (and condition-specific community if you have one) about any particular things that you might need to be aware of, or can do, to look after your own particular mental health in relation to your unique condition.

Cerebra produce a wellbeing guide and a personalised ‘action plan’ to complete for parents.

The NHS offer a free online personalised ‘Mind Plan’ resource.