We all have physical health as well as mental health. Sometimes our physical health is good and sometimes its poor, and our mental health is exactly the same. There is growing recognition in society that mental health should be as acknowledged and supported appropriately. If we had a sore leg or back, we would get it seen by a healthcare professional just as we should for our mental health when its suffering.
We still aren’t very good about talking about our mental health, we won’t often say we are feeling a bit low but will talk about the cold we have! It’s important for all of us to talk about it a bit more.
Medical Challenges and Mental Health
There is growing awareness around the impact of complex medical needs and the impact on mental health, and this can apply to both the person with the condition and the carer(s) of that person. This doesn’t mean having a form of Microcephalic Primordial Dwarfism means your child or you will have poor mental health, it just means there may be an increased, and understandable, chance you may be struggling.
Looking after your child’s mental health
Your child will communicate to you in so many different ways, sometimes it’s just about picking up small cues that something is not right in their world and giving them the space to explore it further with you. Possible signs of poor mental health could be changes in their eating habits, angry outburst, increased tiredness, changes in friendship groups, difficulties in concentrating or signs of physical harm. Unfortunately, a lot of these can be just typical teenage and younger child behaviour, but they might mean something is up. Creating a space to talk and listen builds trust, and means they are more likely to come to you in future about their mental health. When it’s the right time to seek further support you and they can work on it together.
Some good tips:
- Be patient – give them time until they are ready.
- Be ready and open minded – let them know you are available when they are ready to talk.
- Let them communicate – try not to jump in and fix it or save them, be their sounding board to bounce ideas off and find solutions.
- Listen – by simply being with and listening shows that you care for them and you are there for them when they need you.
Looking after your mental health
The parent or carer(s) of a child with a rare condition is going to understandably feel under a great amount of emotional pressure and stress. A research study by Bliss found that 80% of parents whose babies were admitted into neonatal care think their mental health suffered after their experience. Parents or carer(s) are at risk of developing anxiety, depression and post-traumatic stress disorder. Your mental health is as important as anyone else’s, and looking after yourself is very important. You cannot pour from an empty cup!
There is a lot of information and good advice on how to look after your mental health, have a go and see what works for you, you might find something that helps. Here are some good starting points.
- Talk to someone: Reach out. Find someone you can talk to, another parent with MPD, a Facebook or online group, an advocacy group, a longtime friend, a family member, or find a counsellor who can support you.
- Keep Active: Walking in nature helps your brain to process difficult situations and experiences. Even better walk and talk with a friend. Practice yoga and deep breathing exercises. Run, cycle, weight-lift or bounce. Do it in public or alone, get moving and your brain will too! Being active is a significant benefit towards improving your mental health.
- Eat Well: For your brain to stay healthy it needs a mix of nutrients, just like the rest of your body. It’s easy to slip into unhealthy eating when you are low, but try and eat a rainbow in your day!
- Drink Sensibly: It’s a known stress response to drink more alcohol, but it will leave you feeling more exhausted, and the effects of stress relief are only temporary. Drinking isn’t a good way to manage difficult feelings. Try to limit it, try to change your routine or habits, or only drink on certain days of the week.
- Ask for help: Keep in touch with friends, family or online support groups. We are not all strong all the time, and that’s ok. Seek out further support from a counsellor, psychotherapist or therapist if you feel this might be helpful.
- Take a break: Change something even if it’s just for a few minutes. Pause. Breathe. Take a lunch break. Have a shower. Go for a 2 minute walk round the garden. A few minutes can be enough to de-stress you.
- Do something you love to do and feel good at: What do you love doing? What activity can you lose yourself? What did you use to love doing? Whatever it is doing something you love boosts your self-esteem.
- Be kind to yourself: Accept who you are and let that internal voice be kind you yourself. You are amazing and unique and doing the best you can. Parents or carer(s) want to everything possible for their child, and it is easy for them to feel they are not doing ‘enough’ and they are not the perfect parent. These feelings don’t help anyone, remember, whatever you do is enough.
- Breathe: Breathing deeply fools your body into relaxing, dropping blood pressure and heart rate. And it is the one thing in life you can always control. Here are some breathing techniques that really work:
Put one hand on your stomach and the other on your chest, imagine your belly is a big balloon filling up from the bottom to the top. Count in for 7, really filling that balloon up. Then even slower let that breath go, dropping your shoulders and relaxing your whole body, for a count of 11. Do this for 5 minutes.
This balances the left and right sides of the brain. Use a 4 – 6 count on each inhale and exhale. Use your thumb of your right hand to close the right nostril and inhale through the left side. Then use your index finger of your right hand to close your left nostril, exhale through the right. Next, inhale right and exhale left. Continue for 10 rounds. You are exhaling and inhaling on one side and then moving to the other side to exhale and inhale.
The key to good mental health is by understanding how to spot, and prevent, poor mental health. Communication is the key, and the need to be in touch with people who understand is so important when dealing with rare conditions. This rarity can bring isolation, and isolation can make matters worse. By talking to someone the isolation is reduced. By connecting with people who are going through similar experiences the isolation can be removed. WWGF provides opportunities to connect with other families through the Family Support Team, during the Annual Convention, or via email or telephone. The WWGF Facebook and Instagram groups are an excellent place to share your experiences and to be part of a community so you don’t feel like you are in it alone.
There are so many places and different support networks available it’s about finding the right one for you. A first place is your GP, if you are concerned talk to them.
BACP (British Association of Counselling and Psycotherapy) – https://www.bacp.co.uk/
Bliss (Support and information for babies born sick and premature) – https://www.bliss.org.uk/
Carers UK (offer a free helpline and website support) – https://www.carersuk.org/
Childline (confidential service for children and young adults up to 19) – https://www.childline.org.uk/
Happify (learn tools to overcome stress and negative thoughts) – https://www.happify.com/
Insight Timer (a free app with relaxations and meditations) – https://insighttimer.com/
Kooth (Support for young people) – https://www.kooth.com/
Mental Health Foundation (information about mental heatlh) – https://www.mentalhealth.org.uk/
Mind (a mental health charity offering support and information) – https://www.mind.org.uk/
Rehab Recovery (an organisation that provides addiction treatment and healthcare advice for a wide range of different addiction and dependency problems here in the UK and around the world) – https://www.rehab-recovery.co.uk/
The Free Mindfulness Project (free downloads for relaxation) – http://www.freemindfulness.org/download
Young minds (support and information for young people) – https://youngminds.org.uk/
Frequently Asked Questions:
I think our child has Microcephalic Primordial Dwarfism. Can you help us?
Yes we can! All you need to do is send an email to Sue Connerty at firstname.lastname@example.org and she will get back to you via email asking some information about your child. On receipt of your reply, she will the assess the information and consult with doctors on our Medical Advisory Board. If all information corresponds with the criteria needed for the WWGF to your child and your family, The WWGF will then send you some information how to regisiter for support and unite with other families affected by Microcephalic Primordial Dwarifism.
How can I help the Walking With Giants Foundation?
How do I make a donation?
There are several ways that you can make a donation, please visit our 'Making A Donation' page.
If you would like your donation to be recognised please let us know by:
Calling us 0151 526 0134 (from within the UK),
Calling us +44 151 526 0134 (from outside of the UK),
Email us on email@example.com,
or by writing to us at, Walking With Giants Foundation, PO Box 85, Maghull, Liverpool, L31 6WW.