For injured people, it’s vital to find time to talk about mental health
Mental health is something that is becoming easier for many to talk about, though there is still a stigma attached for some. However, when an individual has experienced a catastrophic, life-changing injury, how are the challenges of mental health issues amplified or – perhaps – overwhelmed by other problems?
For Vicky Main, a Peer Support Champion at The Cauda Equina Champions Charity – a cauda equina syndrome charity – her life was completely changed by her cauda equina injury. “Once I came home from hospital it became clear that things would be very different. I became dependent on others to help me with my personal care and to do even basic things like making a cup of tea. My husband and children became my carers, and the guilt was overwhelming… I felt angry, upset, frustrated and hopeless”.
James Martin, who also lives with cauda equina syndrome after being diagnosed during the pandemic, has found similar challenges. “During my time in hospital I spent several weeks in isolation unable to see family members until I had two negative COVID tests. I really felt alone as I had never heard of cauda equina syndrome; I laid there unable to feel my leg, bladder, bowel or any sexual function”.
“I used to live a happy, healthy active life with my wife and young children. This has been the hardest part trying to adapt at home and the children not being able to have the same fun with Daddy, unable to pick them up or run around the garden with them and basic things that I used to take for granted, nice long family walks in the forest, bathing the children, walking them to school”.
People living with brain injury also often experience mental health problems, such as anxiety and depression. When something as integral to you as your brain is damaged this is sure to impact on your mental health, as we found when we spoke to Nick Gibbs – a brain injury survivor – about his challenges with memory loss following his injury for our film ‘Remember Me’. As Nick repeated when we spoke to him again recently, “the main challenge is that I don’t really know who I am”.
Dr Audrey Daisley, a Consultant Clinical Neuropsychologist who has years of experience working with brain injury survivors, also attests to the fact that for “survivors, their relatives and support workers mental health issues are amongst the most challenging to cope with”.
So, how does this affect families and others close to the injured person?
For Vicky, the effect of her cauda equina injury on her family is clear. “Although [they] don’t talk about it, I do think that my diagnosis has had an impact on their mental health”. Furthermore, it is a challenge to engage with them on the subject. “It is difficult to get those close to me to talk about how they are feeling. I think they are worried that they may upset me, but I can see the worry and strain on their faces”.
“My injury has had a huge impact on my whole family and friends”, says James about the impact of his cauda equina injury. “[My wife] Kate has now become a carer for me along with working full time and looking after the children, to try and now be the rock for the whole house does have a big strain on her mental health”.
Dr Daisley understands better than most the challenges faced by those who have experienced life-changing injuries, coordinating with families and support workers to deliver care for those living with a brain injury. She knows from her own experience, that appropriate mental health support for people with acquired brain injuries can be hard to come by in the community. “As such, responsibility for supporting survivors with ABI with their mental health typically falls on family and support staff – who are often facing significant levels of stress and other mental health problems themselves”.
We know already, having held the inaugural Ahead Together Conference in 2019 and from our own experience, how families can be devastated by brain injury. This is something we are exploring further in our next Ahead Together Conference this year: looking at how a catastrophic brain injury can even challenge a family’s identity. It is clear that, for those closest to a brain injury survivor – and the survivor of any life-changing accident, really – that there is a real toll taken on their mental health.
How speaking about mental health issues can help injured people
However, there is help out there for people who have experienced a life-changing injury and want to speak about their experience. Sometimes, with injuries that are difficult for the general public to see and understand, it may seem like there is no one out there who understands these ‘hidden disabilities’, but there are many support groups available to help people living with these conditions.
Vicky, now a representative of cauda equina organisation The Cauda Equina Champions Charity, initially found the charity she now works for a real lifeline of support when she was struggling. “I realised I wasn’t alone”, she said. “There were others out there who were dealing with the same things as me. I was able to ask them what coping strategies they used and often just sharing my worries helped me feel a little bit better. Also, when I was struggling with sleep at night, I could pop onto the Facebook support group and know that there would be someone there to talk to”.
James also found The Cauda Equina Champions Charity during his time in hospital, and has found the personal experience of those running the charity invaluable. “The founder Claire soon got in touch with me by phone and we spent about 40 minutes talking. I instantly felt relief that someone knew exactly what I was going through as she also suffers with CES. Claire then told me about several support groups the charity has online which I instantly joined and have kept in contact daily with fellow CES sufferers around the UK”.
CRPS UK, a charity that helps people experiencing complex regional pain syndrome, something that is still not fully understood even in the medical profession, found that offering a coffee and a chat to their service users had a remarkable effect on sufferers’ wellbeing.
One person who attended CRPS UK’s coffee mornings (started recently to help people during the coronavirus pandemic) said, “They say a trouble shared is a trouble halved, but being able to laugh about all sorts of things with people enduring similar problems, can make those difficulties melt away, for a little while at least”. Another added, “It’s better than any medicine. Spend a couple of hours with some very special people to have a laugh and a chat. They have become like extended family. Better than family actually, because they understand your pain!”
Whatever injuries people are experiencing, chances are there are people who are willing to speak about it. Whether that is The Cauda Equina Champions Charity, CRPS UK, Headway or The Silverlining Charity for people with brain injury, the SIA for people with a spinal cord injury, there are so many charitable organisations out there who want to help people who may be struggling.
Talking about mental health issues is not easy, especially when you and those close to you are coming to terms with a life-changing injury. As James said about his experience, “Initially I struggled to talk about it; I went through an initial feeling of shock, ‘why has this happened to me?’ I struggled to come to terms with it. Even today it still has not sunk in properly”.
However, as we have demonstrated here, if you have experienced a catastrophic and life-changing injury, there are people out there who you can talk to. Our team, for example, is dedicated to delivering a Team Around the Client approach for our clients, ensuring that they have the right support group built around their ongoing needs.
Mental health issues are challenging, and can serve to make life with an ongoing injury very difficult. However, it is important for people who find themselves in these situations to find the right people to talk with. You can be certain that they are there to hear you.
Listen to our podcast where we spoke to Nick, James and Nicola Cale - a case manager at CCMS who is involved with the Silverlining Charity - about the mental health issues which affect people living with long-term injury.