Mental Health and Wellbeing:
Receiving a diagnosis or living with a form of EDS can be exceedingly difficult emotionally and can have a huge impact, including anxiety, stress, low mood and emotional exhaustion. This is a normal response, and it is common for people to feel they would like some more emotional support.
Finding out about the possibility of EDS in general can bring a huge variety of emotions and thought processes. Each variation of EDS can bring about their own feelings and thoughts unique to that particular prognosis. By the nature of EDS, there are a number life altering impacts that can affect mental health. It’s understandable and very normal to have your mental health affected, nothing at all to be judged for or beat yourself up about.
You may find you grieve all the different things you had thought about yourself and your future. The hopes you had for yourself, your career, travel plans, family, and children. All these things may still be achievable but may need to be done in a different way to what you had pictured. All these things may lead to times when you feel down or maybe even lead to depression.
Feeling down or experiencing depression is a very normal reaction. It’s how we handle the down feelings or depression that can alter how they affect our day-to-day lives. There is no one single list of symptoms of depression, equally; there is now definitive list of causes of depression. it’s what we do in these times of struggle that make an impact.
So what are some things that can help?
- Finding a supportive empathetic GP – Getting support for mental health and possibly referrals to other support services
- Talking to family and friends
- Finding and doing things you enjoy. for example: reading, walking, being in nature, listening to music etc. things that are manageable for you in that moment that might bring a little enjoyment and happiness to your world.
- Reaching out and asking for help – through loosely speaking, calling or texting helplines, family and friends.
- Making time to sit and feel what you are feeling – that’s ok and healthy, sometimes its needed before you can identify what would be helpful in moving forward.
The following information may be of help in providing possible avenues of support and information. Please note that the following information is provided in good faith and as a guide only.
MINISTRY OF HEALTH New Zealand Government Ministry of Health
Talking Works – List of counsellors, psychotherapists and psychologists who are registered with a recognised New Zealand professional body.
General Mental Health Charities and Helplines
The Samaritans – offers free, confidential, 24-hour emotional support over the phone (0800 72 66 66)
The Mental Health Foundation of New Zealand is a charity that works towards creating a society free from discrimination, where all people enjoy positive mental health & wellbeing.
Changing Minds – Changing Minds is a national not-for-profit organisation operated entirely by those with personal experience of recovery from mental health and/or addiction issues, we work in the broad area of wellbeing services, advocacy, human rights, and health policy.
GROW – a Community for Mental Health and Personal Development
Lifeline – Suicide Crisis Helpline – 0508 828 865
Lifeline is a free, nationwide service available 24 hours a day, 7 days a week and is operated by highly trained and experienced telephone counsellors who have undergone advanced suicide prevention training. If you think you, or someone you know, may be thinking about suicide, call the Suicide Crisis Helpline for support.
If you believe either you, or someone you know, is in immediate danger, please call emergency services immediately on 111.
Crisis Helpline – 0508 826865 free, nationwide service available 24 hours a day, 7 days a week and is operated by highly trained and experienced telephone counsellors who have undergone advanced suicide prevention training.
Healthline – 0800 611 116 – for medical advice from trained nurses.
1737 -Need to talk (free text or free call) – 1737 – to talk to trained and qualified counsellors
Youthline – 0800 376 6333 – free text – 234
Anxiety Helpline – 0800 269 4389
Depression Helpline – 0800 111 757
Ehlers-Danlos Communities and Support
Ehlers-Danlos Syndromes New Zealand – A society to raise awareness, and support patients, within New Zealand of all Ehlers-Danlos Syndromes and Hypermobile Syndromes. We run several support groups on Facebook where you can chat to other EDSers around the country and get support on a nationwide level. Loosely Speaking is our Nationwide Support group while we also have Local Hub Support Groups where you can meet and talk to others locally.
The Ehlers-Danlos Society – The International Society for EDS, to spread awareness and make changes within the medical system for the support of those with EDS/HSD
Annabelle’s Challenge Vascular EDS Charity in the UK dedicated to awareness and support for vEDS patients worldwide.