Understanding how a spinal cord injury (SCI) affects both our clients and their wider support network of friends and family helps us to provide the best care possible. It can also provide useful insight and guidance for people who are navigating their way with an SCI, for themselves or a loved one.
A spinal cord injury (SCI) can happen in the blink of an eye but have life-changing consequences.
Alongside the obvious physical effects of an SCI, the hidden impact on emotional and mental health requires equal care and attention.
It’s important that the right care is provided to help clients return to the highest level of function and independence possible, whilst improving their overall quality of life – physically, emotionally, and socially.
There’s no right or wrong way to feel when your life is impacted by an SCI, whether the injury is your own or that of a loved one. No two injuries, experiences, circumstances, and reactions are the same. But what is completely normal is to experience constantly changing emotions.
It’s also important to recognise that many feelings are transient and the way you view and deal with the injury will evolve over time.
- You might experience shock and feel numb or disbelief upon learning of an SCI.
- You might feel anger and question why it happened to you and your family.
- You might feel sadness and mourn the loss of the life you previously had and the future life you had planned.
- You might feel overwhelmed and helpless due to the enormity of the physical, emotional, and financial impact of the SCI.
- You might feel stressed by the volume of information, decisions and responsibilities required.
- You might feel lost and unworthy and unsure of new roles within the family.
- Your own inexperience and external social attitudes to disability might cause you anxiety and apprehension around the future and how you and your loved ones will cope.
- You might feel frustrated by the pace or prognosis of your rehabilitation.
- You might have days where you feel both optimism and despair.
All of these are natural and normal and to be expected as you navigate your way.
Shifting roles and identities
The loss of physical independence and reliance on others can be one of the biggest adjustments to make with an SCI. Learning the physical limitations of what you can do independently whilst also getting used to someone else helping with your physical and personal care, can be emotionally and physically draining. This doesn’t happen overnight.
Inevitably, roles and identities within relationships and families shift following an SCI. The role of the individual with the SCI may be more passive than previously, with a different perceived contribution to family life and significant dependence on others. Their role at work, as a parent, as a spouse, invariably changes – and both they and others must adjust.
Some everyday activities that were taken for granted before the injury, must be re-thought and adapted for all members of the household.
For spouses, especially if they are providing care, the loss or barriers to physical intimacy are challenging to adjust to. Becoming a caregiver to a spouse changes the dynamics of the relationship.
How to move forward
Acknowledging both the negative and positive feelings is an essential part of understanding and living with an SCI. If negative feelings persist, it’s vital to reach out and seek help from a professional to find ways to cope, feel stronger and avoid sadness developing into depression.
It takes time to process the multi-faceted impact of an SCI: to understand the vast amount of medical knowledge shared; to make multiple decisions on the household’s new lifestyle, routines, roles, and responsibilities; to trust and build relationships with professionals involved in medical, physical, and emotional care; and to come to terms with the new day to day realities of living with an SCI.
Learning new approaches to the multiple aspects of everyday life to make things easier and more manageable for the entire household, can, ultimately make life more enjoyable and even bring a family closer together.
Reaching out and engaging relevant and experienced professionals can be vital when navigating an SCI. Whether your home needs adapting structurally or with specific equipment, or you need specialised care at certain times of the day or with certain tasks, or you just need someone to talk to, seeking external help can make a positive difference.
In the longer term, reintegration to work, family life, the community and socialising are essential and can be achieved by reclaiming or redefining roles. Old responsibilities may be lost, but new ones can be given which are appropriate and achievable. Engaging in meaningful activities is crucial to living an enjoyable and purposeful life.
Life might look and feel vastly different than it did previously but with time, and the right care and encouragement, life can be fulfilling once again. Relationships can strengthen and deepen, loved ones and life itself can feel more appreciated, and new careers or directions can flourish.
We understand the multiple challenges when caring for someone with a spinal cord injury. With the right care, our clients with SCIs continue to stay in their own home, and lead fulfilling, active, and independent lives.
If you or a loved-one would like to understand more about our bespoke spinal cord injury care or any of our services such as respite care, day or night live-in care, please get in contact, we’d love to help.