Quick summary: Disability bereavement affects nearly everyone as 16% of people are disabled at any time and most will experience it in their final eight years of life. Unaddressed grief from newly acquired disability commonly leads to depression, isolation and declining wellbeing while effective strategies such as acknowledging emotions, challenging negative beliefs and building supportive networks promote healthier adjustment and mental health. Healthcare practice and public policy should prioritise early counselling, peer support and education on these techniques to reduce long term psychological harm and improve outcomes for individuals and society.
With 16% of us being disabled at any one time, and, each of us expected to be disabled in our last eight years of life, disability bereavement impacts almost everyone.
When something is inevitable, it is wise to learn how to deal with it. Some people deal with newly acquired disability in amazingly constructive ways, while for others, that inescapable moment starts a downward spiral of depression, deterioration and death.
What are the most effective strategies to deal with disability bereavement? What are the techniques used by those who best deal with newly acquired disability? How can you apply those methods to your life?
What is disability bereavement?
Disability bereavement is the profound grief that accompanies the sudden or gradual loss of physical, sensory, or cognitive abilities. It is not just about mourning what was; it is a complex psychological and emotional process involving the reconfiguration of our identity, relationships, and future aspirations.
The most common psychological effects of a newly acquired disability come from the deep sense of loss of abilities, independence, identity, future plans, body image, social roles, and often a sense of control. They include:
- Shock and numbness: An immediate emotional (and sometimes physical) numbing that can last hours to days or longer, which seems to serve as defence against what is an overwhelming reality.
- Denial: We use denial as a defence mechanism when we minimise or reject the permanence or implications of our disability. We can be in denial for weeks to months. Denial is not all bad; it allows us to gradually process what has changed. Denial can become problematic if it blocks our treatment or rehabilitation.
- Anxiety and fear: When our lives have just been upended, it is entirely reasonable to have an intense worry about our future, our dependency, pain, health decline, and how life will change. Indeed, if we do not have such thoughts, something is very wrong.
- Anger, internalised and externalised: If you have just been rendered disabled, frustration, rage, and/or bitterness directed at yourself, medical staff, loved ones, fate, or society, is to be expected. Such anger comes from our actual or perceived sense of injustice and/or loss of control.
- Depression: Post disability depression is very common, to the point of being normal. It typically involves sadness, hopelessness, despair, low self-esteem and emotional and social withdrawal. Again, if someone is not at least slightly depressed after such a loss, it ought to raise concerns
- Isolation, loneliness, and alienation: Previously our friends and relatives were like us, able bodied. Suddenly that has changed, and it is normal to have feelings of being different, and disconnected from others. We have all seen how disabled people are stigmatised, or are treated as problems to be managed. Now, that is us; we know how others will treat us. That awareness intensifies our emotional distress.
Many models, including my own, describe these as non-linear stages of adjustment. That is, not everyone experiences every stage, in the same order, or for the same duration:
9 Stages of grief (MacLennan, 2022)
- Shock/numbness
- Denial
- Anger
- Bargaining
- Guilt
- Depression
- Acceptance
- Integration
- Empowering adjustment
Over time, with support, most people move toward adjustment and acceptance, or acknowledgement, a realistic integration of the new reality into their lives, letting go of previous hopes, and building new dreams, goals, roles and meaning. The speed and extent of integration and adjustment is influenced by factors such as personality, social support, access to counselling, and environment.
Some factors can impede adjustment and integration, such as depression, anxiety, and PTSD (especially after trauma has caused the disability), actual or perceived discrimination, stigma, and lack of support.
Early intervention with techniques such as counselling, peer group support with similarly disabled people, often helps achieve a healthier adaptation and reduces the emotional distress of the journey to new life.
Globally, over 1 billion people live with some form of disability, and reasonable projections are that the number will rise as populations age. In the UK alone, around 14 million people, one in five of the population, identify as disabled.
Despite being a near universal human experience, disability bereavement is rarely discussed openly. Why? Perhaps because it challenges our cultural narratives of independence and productivity. Or maybe because admitting to grief over disability feels like weakness in a world that prizes resilience. Possibly, we find the prospect of a such a future too painful to discuss. Whatever motivates our collective silence, the reality is that ignoring disability, or its prospect, only amplifies the pain, and makes it tougher to cope with if (or more likely, when) it happens to us.
When we do become disabled, if we do not address the grief, that can and does lead to chronic mental health issues, including anxiety disorders and major depression.
The key question, then, is not whether disability bereavement will hit, for most of us it will, but how we navigate the grief to emerge stronger, more adaptive, and perhaps even more fulfilled.
The roots of disability bereavement
To overcome disability bereavement, we must first understand its psychological origins. Simply put, newly acquired disability disrupts our sense of self. It is more than an identity threat; it is an enforced, and unwelcome identity change.
For most of us, our identity is tied to our abilities: the fashion model who values their own beauty, the runner who identifies with speed, the artist with dexterity, or the professional with exceptional articulation. When disability arrives, it changes self-perception; it forces a painful reconstruction of our selves.
Emotions play a central role, too. As I have noted in both my coaching and psychotherapy practice, initial reactions to newly acquired disability often stem from fear of dependence, of judgment, of a now uncertain future. Those fears are often followed by negative and disempowering thinking, such as catastrophising, (fixating on worst-case scenarios): “I’ll never work again” or “No one will love me like this.”
Confirmation bias may kick in, too. That bias means every setback is interpreted to reinforce the narrative of helplessness, while at the same time it ignores any and all evidence of potential adaptation.
Social factors worsen what can quickly become a mental doom-loop. Society’s ableist norms, view disability as tragedy rather than an inevitable and expected variation. For some of the newly disabled, having previously seen disability in such a light, they internalise the stigma, and thus create, in themselves, a sense of shame.
Family dynamics also change for the newly disabled. Loved ones may become overly protective, and unintentionally make learned helplessness much more likely. Some spouses of the newly disabled file for divorce, adding to the trauma.
For some of the newly disabled over protection by well-intentioned others spirals into a “psychological disability trap”, akin to the poverty mindset.
Yet, some people, despite all the factors that could drive them to despair, go on to thrive after becoming disabled, and in so doing inspire those around them. For example, most of us who watch the Paralympics, are in awe of the mental recovery of some of the most severely disabled people who have shaped themselves into elite athletes.
What separates those who thrive from those who deteriorate?
Simply put: resilience factors such as emotional awareness, adaptive coping strategies, and a growth mindset. Those who fare best view disability not as an end but as a pivot point; they reframe loss as an opportunity for self-reinvention.
What do such amazing people do that others do not?
Effective strategies to overcome disability bereavement
What follows are not quick fixes but deliberate, ongoing practices, grounded in evidence-based techniques such as those in self-responsibility therapy.
Acknowledge and validate your grief without judgment
The first step is recognition. Deny our grief, and it festers; embrace it, and healing begins.
Send yourself the signal that you are acknowledging your grief: keep a daily record of your emotions. That might include answering self-posed questions such as: What abilities do I miss? What fears do I have?
Many people report that keeping a diary is a cathartic process, which externalises their pain, thus reducing its intensity. Note of caution: use diary keeping to be honest with yourself about your feelings of loss, and once aired, move to documenting constructive thoughts. That is, posing and answering questions aimed at building your new life.
Validate your feelings; they are to be expected
Some people will seek to minimise your feelings with such statement as, “At least you’re still alive.” They clearly do not understand. Connect and communicate with people who do understand, who have been through what you are experiencing. Sharing stories with them, normalises your experience, and avoids isolation. Those who adapt best often report that acknowledging and sharing their grief, as a natural response, rather than a weakness, was hugely effective.
Challenge your disempowering beliefs and cultivate a growth mindset
Disability bereavement worsens when we make negative self-statements and tell ourselves doomsayer stories. Interrogate and challenge such internal narratives. Ask yourself: “Is ‘I’ll never be independent’ a fact or a fear?” Gather counter-evidence, mentally collect stories of others who have adapted, and even thrived, such as Stephen Hawking or Frida Kahlo, Helen Keller, all of whom turned disability into their creative fuel.
Instead of saying to ourselves “I can’t,” we can swap it for “How can I?” This mental pivot develops our self-responsibility, and, reduces our learned helplessness.
Those who adapt best to newly acquired disability, almost always chose their own mindset. Multiple disabled people have sailed, solo, around the world. Yes, it’s true. The people who thrive with disability, deliberately choose challenges that stretch their ability to cope. They see adapting as a learning curve that provides a renewed purpose and motivation.
Create routines and helpful habits
Disability disrupts daily life, initially. That disruption can amplify our grief when we are constantly being triggered by evidence of what we cannot do. Be patient with your new self. Assess what has changed and come up with solutions that work, for you. Repeat those useful techniques until they become habits. The more empowering habits you develop, the better and faster your recovery from bereavement.
Take control of your thoughts, to reduce rumination
Rumination is the mental doom-loop where the same, usually negative, thoughts are repeated endlessly. By using techniques such as meditation or yoga (adapted forms are available) you can focus on the present, and thus reduce rumination and future-orientated anxiety.
Social connection for mutual support
Isolation is known to cause depression. Many newly disabled people withdraw from life. Tough as it may be, strengthening existing social contacts, and building new, mutually supportive networks speeds our journey into our new life. Those who thrive after disability say that changing the nature of their relationships, consciously, was helpful.
Find and make contact with people who have made the journey you are on. Social support from your new peer group will help you, and them. And once you have made the journey, help those who are still on route; that will make you feel even better.
Be conscious of your adaptation journey, and the support that you need to make it. Those who adapt best create “resilience teams,” whose members include therapists, mentors, friends, peers. Ask those on your team to hold you to account on the plans you make.
One of the toughest parts of our journey, is dealing with people who have no understanding or empathy for disability. With your support network, you can role-play how to deal with encounters with such people.
Seek professional support
Almost always when people thrive with a newly acquired disability it is because they have acknowledged their new reality and committed to making the best of it.
If you have not yet reached that point, after, say six months, seek professional help. My suggestion is: seek the help from someone who has made the journey you need to make. Find a therapist who is themselves disabled knows the reality of the journey you are going to make, not just the theory from text books.
From loss to legacy
When we choose positive meaning for our new life, we can cope better. Viktor Frankl famously noted that purpose transcends suffering. Choose to pursue something that gives you meaning. That could be advocacy, education, coaching or mentoring others, or creative pursuits… or any of a near infinite range of options.
Your newly acquired disability may have closed some doors, but the vast majority of opportunities still available to you, could fill hundreds of lifetimes.
Here is some hidden good news. Those who best deal with disability bereavement seem to experience substantial “post-traumatic growth.”
The specific growth varies by person and circumstance. Common themes I have observed include enhanced empathy, better relationships, renewed appreciation for life, stronger focus, acquisition of new skills and knowledge, and uncovering previously hidden talents.
Handling the physical and emotional elements
Coping with disability bereavement is more than a mental journey. Physical pain or fatigue, and a range of other symptoms can intensify or prolong our grief. If grief persists beyond six months, seek an assessment for conditions such as adjustment disorder. Having said that, the fact that you are reading or listening to this article may indicate the kind of positive action which precludes a diagnosis of adjustment disorder.
Copy the techniques of those who adapt best
Disability bereavement is inevitable for most of us, but deterioration is not. By acknowledging our grief, challenging our beliefs, rebuilding our routines, seeking support, finding meaning, and addressing the mind-body link, we can create a thrilling new life.
Adaptation is not about returning to our previous normal, it is about creating a better, richer path. With a healthy diet, no alcohol, good sleep, and exercise to release mood elevating endorphins, overcoming disability bereavement is known to be faster and more complete.
Professor Nigel MacLennan runs the performance coaching practice PsyPerform.
