Growth conditions and mental health

Mental Health

We all have mental health, just as we all have physical health. And as with physical health, our mental health can sometimes be good and sometimes be poor. There is a lot of recognition in society now that mental health should be viewed as physical health is viewed, an equal status with acknowledgment of the seriousness of both. We all owe it to ourselves to spare time and think about how we are feeling, after all, if we had a pain in our leg, or back, we would see a GP.

Typically, we aren’t too good at talking about our mental health, there still appears to be a societal stigma attached to it. We would happily talk about our cold to the concerned passer-by in the street but wouldn’t dare mention we were feeling ‘a bit low at the moment’.

Perhaps we should talk about it a little bit more.

Medical Problems and Mental Health

The growing awareness around mental health has brought an acceptance that living with a rare condition can have a negative impact on that mental health and this applies to both, the person with the condition and the carer(s) of that person. This doesn’t mean that having a growth condition means your child will have poor mental health, or that the parent/carer looking after them will, it just means there could be an increased, and understandable, chance they may be struggling.

Spotting the Signs

Spotting the signs of poor mental health in your child is not a formula or a scientific process! Children are naturally prone to mood swings or outbursts, or periods of quiet; this is normal child behaviour, unfortunately it is also the behaviour that might indicate emotional health difficulties.

These are still good things to look out for, as are changes in their eating habits, angry outbursts, increased lethargy or extended sleeping times, sudden changes in friendship groups, difficulties in concentrating or signs of physical harm against themselves. The list isn’t meant to sound scary, and as mentioned above, a lot of these are just typical teenage, and younger children’s behaviour. The list of signs and changes isn’t an indication of poor mental health, it is just the list of triggers that mean you have noticed that something MIGHT be up.

The one trigger that is a guaranteed sign that your child might be having difficulties is them telling you something is wrong! And that sounds as easy as it is unlikely – but not necessarily. This is an area where you can be in control; if you have created an environment where it is OK to talk about feelings, where there is trust and openness and they know they can turn to you for help, then there is a good chance they will talk to you.

Looking After Your Child’s Mental Health

The campaign to put mental health and emotional health on an equal footing is right but the parental response to each is going to be very different. If your child comes to you with a broken arm you will be straight to A&E at the speed of light! If that is the response when they come to you saying, ‘I am feeling a bit low at the moment’ they may not speak to you for quite a while!

Emotions are very precious to each of us. If someone is trusting you by talking to you about theirs it doesn’t necessarily mean they want you to take control of them. It could just mean they want someone to listen and understand, while they sort it out for themselves.
This is where creating the right environment is crucial. If a parent takes their child to the GP as soon as the child mentions they are struggling with their mental health, then it is possible the child won’t come to the parent the next time they need to talk. Children have incredible resilience and have great ideas on how to help themselves. What they need is someone to listen to them, someone to understand and support them. This will build trust that will have them going to the parent to discuss their health. Then when the time is right to go to the GP, they will ask for it.

Some good tips on how to build the right environment include:

• Be patient – give them space to come to you, the person may not want to talk about it until they are ready. Forcing the situation will make them less likely to come to you.
• Be ready and be open-minded – let them know you are there for them and be ready to talk when they want to.
• Let them talk – try not to jump in and ‘save them’, let them explore the options and be a sounding board for them. If the GP is the obvious solution then let them try to come to that conclusion.
• Listen – it sounds really obvious, but by listening you are showing that you care and that you are there for them when they need you.

Look After Your Mental Health

It is completely understandable that the parent/carer of a child with a rare condition is going to feel under a great deal of emotional pressure too. Their mental health is at risk the same way as the young persons is. Looking after yourself and your mental health is very important.

There is lots of good advice around on how to look after your mental health. These include: eating well, exercising, being creative, talking to people – not all are right for all people but by spending a little time thinking through what might work for you, you might find something that helps.

The link below will give you some other ideas:

How to Look After Your Mental Health

Young Adults – Looking after your Mental Health

There is a lot of support out there for teenagers and young adults experiencing emotional and mental health issues.

A good first place to look for support is within your school. Schools, just like GPs, can make referrals to CAMHs services, you can talk to your pastoral team, or a head of year about this. Also, many schools have counselling services, which provide a confidential space for you, where you can talk about the things you want to talk about. The counsellor won’t share anything that is said with teachers or parents (unless they are extremely concerned for you) and if you are old enough you won’t even need a parent’s permission to see the counsellor, in fact they don’t even need to know you are seeing a counsellor, unless you want to tell them *.

It can be very difficult talking to parents about these kinds of issues. You may be afraid of upsetting them, or having them marching you down to the GP and taking control of the situation. There are probably other people you can talk to. Within school there are the people mentioned above but what about within your own family, do you have aunt or uncle, grandparents or a family friend. It is important to talk, so it is important to spend a little time thinking about who you trust enough to talk to. They won’t feel burdened by it, in fact they would probably feel it a privilege that you trust them enough.

Social media can be a good place to talk – of course it can also be a terrible place, with bad advice and the worry that you don’t know what the person you tell will do with what you tell them! You need to know who it is you are talking to. It is really important to stay safe online, your emotions and feelings are very personal and important to you, make sure you know who you are talking to about them. And if you feel something doesn’t seem quite right, talk to someone you trust about it.

A fantastic online place for support is Kooth  and another great place is Young Minds

* For parents/carers it can seem quite alarming that your teenage child will access counselling without them or the school asking your permission. That is understandable, but this is your child starting to take responsibility for their own wellbeing, it means that they are acting responsibly and testing their growing independence. If the counsellor has serious concerns for their wellbeing they will let you know.

Conclusions

The key to good mental health is by understanding how to spot, and prevent, poor mental health. The biggest key to this is communication, the need to be in touch with people is so important when dealing with rare conditions. The rarity brings a sense of isolation that can make matters worse. By talking, the isolation is reduced. And by talking with people who are going through similar experiences, the isolation can be removed. The CGF provides many opportunities to share experiences with others in similar positions. The helpline is available by telephone or email. The Annual Convention brings together around 100 families in shared support. And the Facebook groups are an excellent place to share troubles and successes, to be part of a community and to feel like you aren’t in it alone.

More Support

There are many places where you can get support or more advice, the very first place is your GP. Recent studies have highlighted a high connection between poor mental health and rare conditions but it is unlikely your GP will bring it up and ask how you are feeling – that doesn’t mean you can’t talk to them about it, if you are concerned, talk to them.