Mental Health and Wellbeing:

Finding out about the possibility of/or being diagnosed with HSD/ EDS can be shocking, relieving, upsetting… any number of emotions you can name. This is understandable and to be expected. There is no right or wrong way to deal with the possibility of/or diagnosis of HSD/ EDS. Often the journey that is started (or perhaps the journey you’re already on) can trigger a grieving process, grieving can look like and feel like a huge variety of things. Grieving for what you thought life would be, for the things you hoped for your future, for the ‘normal life’ you deserve. For any and everything that is right for you.

I didn’t know about Ehlers-Danlos Syndrome before having an orthopaedic surgeon diagnose me. Initially, I thought it was great; the knee surgery I thought I’d be having was no longer an option (I have already had more operations than anyone should have, and they have never been good experiences). Then I started slowly learning just what EDS was. Yes, things started making sense that never had before and that was great. But it also meant things that I hoped were fixable… Weren’t. Manageable, yes but curable, fixable and solvable, No.

All the grieving this brought about for me was overwhelming which is completely normal and understandable. I don’t know anyone who could go through this process of health struggles and diagnosis without some effects on their mental health. Grieving is a process, a cycle that is nonlinear, a roller coaster of emotions and thoughts. Like going for a walk through the bush, there are light moments full of sun and relief and understanding but there are also those darker moments; filled with shade from the trees and feelings of dread.

Grieving has different stages which each brings its own set of challenges. These stages of grief can happen separately or together and are often a process that is repeated as HSD or EDS brings new challenges, new losses, new changes and new impacts in your life.

This diagram is a simple visual representation of what the grief stages can look like:

These different stages can be further broken down into a huge variety of emotions and thoughts. 

There can be a sense of:

  • Relief – finally having a name, a reason for why there are the health challenges. An answer that means you can clearly explain what is happening and don’t need to continue that exhausting search for answers.
  • Fear – What if I’m not believed? Will I get the help I need when I go to my doctor? Will these things be something I need to deal with for the rest of my life?
  • Shock & Denial – Is this really what I have? It can’t be, I’m not as bad as all these other people. Did the doctor get it right? I’m just a normal person, so it can’t be incurable.. can it? People (family, friends etc) might not believe me so that means it can’t be true.
  • Grief – Mourning the loss of being ‘Normal”, Knowing the future you’d planned for yourself might need to look very different to what you had thought. Losing the person you viewed yourself being.
  • Sadness & Anger – Not everyone understands or even wants to try to understand. People keep trying to “fix” me. If these people love me then they should believe me. If they’re questioning me then who else won’t believe me?
  • Trapped – This is a life sentence. I’m stuck. It seems impossible to think I could improve. I’m stuck in my current job / relationship / friend group because what other employer or person would want a “broken” person.
  • Guilt – What if I’ve passed it onto my kids? I’m such a burden to others. I should be managing better.
  • Stress – There are always problems happening. It is so hard to achieve anything when things take 3x longer. I wish I could do life without needing to think about all this hard stuff.
  • Acceptance & Hope – Now I know what this is, I can learn how to manage it and make a life I enjoy. I accept that HSD / EDS will affect me my whole life but I can deal with each new hurdle when they happen. I can see some light at the end of this tunnel.

This isn’t only relevant for people with HSD or EDS… Partners, Family members and Friends can experience grieving too. For partners, it can also bring about many difficult (and possibly uncomfortable) questions:

  • What will our future look like?
  • Can we/ should we have children?
  • What will our relationship look like and how will it be affected if I (the person with HSD or EDS) get worse?
  • Am I worth being loved by a romantic partner?
  • How will we have a quality healthy relationship when I might need to rely on you for daily care?

All these questions are understandable, hard and nothing anyone ever wants to think about, but they are healthy conversations to have with each other. Even to have some of these conversations with people who aren’t romantic partners can be healthy as well. Inevitably there will be a grieving process for your partner too, may be multiple grieving processes and this is ok; normal and safe.

Much like for yourself, your partner and wider support circle may need time to process all the implications of HSD / EDS; the changes that may happen and the different ways that those relationships might need to be different. Even something as seemingly insignificant things like changes in energy levels that affect family outings and events can be a struggle to adapt to, for you and those around you.

There are ways through this all, as much as it might feel like a long range of unending mountains… communicating is so significant in negotiating these changes. Talking to family and friends about your diagnosis, how it’s likely to affect you and working together to find ways to make things easier can help not only yourself but also others to learn how about your HSD / EDS.

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 it’s needed before you can identify what would be helpful in moving forward.
Seeking further professional support

Finding a counsellor, psychologist or psychiatrist can be done in a number of ways and often involve some cost. 

  • Talk to your GP, they can do much more than prescribe medication. They are there to listen to you and hear your struggles with your mental health as well as your physical health. Your GP may also have the contact details for some therapists in your local area or can refer you to your local DHB community mental health service.
    • Referrals to the DHB community mental health services can allow you access to counsellors (via a public health alliance), psychologist or psychiatrist depending on the area you live.
  • You can also find support by doing a general google search adding specific preferences you may have such as male or female, areas of interest (trauma, family issues, ACC accredited etc).
Funding for private talk therapy
  • MSD can help cover the costs of each appointment; this is considered part of a disability allowance but is an additional amount to the disability allowance. In order to gain access to this funding, you will need to pick up a form from your local msd office of print a form from here which you need to get your GP to sign and your chosen therapist then submit it to MSD for processing and give you a card to get signed at each session you have
    • MSD will fund 10 sessions initially then another 10 (after repeating the application process as above). More sessions can be funded however after 20 sessions, a board needs to review your circumstances and decide if further talk therapy will be of use.
  • ACC can fund sensitive claims counselling, psychologist or psychiatry.
    • For more information, click here 
  • Referrals from a GP to a public health alliance or DHB mental health service is free.

Mental Health Support Providers

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.

Need To Talk – 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.