Some of you may have read my previous article in AStretch and on this website about how to introduce simple daily changes to create cumulative healthy habits in coping with physical and mental impacts of Ankylosing Spondylitis (AS). This article speaks to the mental and emotional experience of living with chronic illness.
Previously I shared that as well as working as a counsellor and psychotherapist, I also have a couple of autoimmune diagnoses myself, including AS. I would also add that I have been an intermittent carer for both my 84 year old parents for the last 14 years: one of whom has had chronic health issues for many years, and the other parent now experiencing chronic issues as well. So I write these articles with some understanding of what it’s like to live with chronic illness from patient and carer perspective. Each person’s experience is unique, and changes can occur quickly and fluctuate, with our state of health and well-being.
There is an aspect of loss in chronic illness that often unintentionally is unacknowledged by the patient and other people associated with a patient: family carers, friends, medical care team, employers and colleagues etc. I’m referring to the associated emotional experience of grief. Loss and grief can sometimes be pushed aside, becoming disenfranchised. This can include perceived future loss which can cause anticipatory grief. Loss and grief are very personal experiences, unique to each person’s circumstance and perception. This article aims to raise the reader’s awareness of loss and associated disenfranchised and anticipatory grief as they relate to living with chronic illness.
A short definition…
Disenfranchised grief is where a loss and the felt emotional disturbance is not acknowledged or is dismissed by the community for any number of reasons: or the emotional disturbance is not acknowledged or is dismissed by self by soldiering on or getting stuck in unexplained “depression”. This is not a criticism of soldiering on, which, when done with full awareness and acceptance, can be beneficial. More about that later.
Anticipatory grief is where we anticipate a loss and live with emotional impact of the known or unknown factors about future. In this context we are talking about health and the broad impact on life. As we try to navigate thoughts about the future there can be a strong emotional disturbance triggered by loss experienced as anxiety. Humans naturally are concerned about the future which can be a driving force to create security and well-being: in normal circumstances it’s a drive for survival that we all possess.
There are many excellent psychology theories on grief. The most appropriate theory that describes the uniqueness of a person’s experience of grief was by John Bowlby the originator of Attachment Theory. Without going into depth, in broad terms, the pearl that applies to loss and grief is that our sense of loss, and the associated depth of emotional experience are determined by the magnitude of attachment to that we perceive we have lost. This can also include anticipated loss. We are naturally attached to living a long healthy life.
My personal experience and professional observation of long term chronic illness highlights to me the loss and grief aspect of living with chronic illness. What stands out to me in all cases is the disenfranchised grief that is prevalent in chronic illness and can often be sidelined and when acknowledged is treated as broad depression: rather than treating the grief process with care and attention. I am not dismissing depression as a diagnosis, simply providing an alternative way of looking at it.
Equally challenging and often unacknowledged is the anticipatory grief and the corresponding anxiety that goes hand in hand with an unknown future, and also knowing that a future previously dreamed of could have to be changed quite drastically due to the health condition we are trying to navigate. These forms of grief also apply to carers and family members who are going along the journey with you, for better or for worse.
It’s important to acknowledge that a person living with a chronic illness is reminded on a moment by moment basis of current loss in physical terms. This can be through experiencing symptoms of pain, fatigue, mobility issues etc. As we go about our daily business in whatever capacity possible there are regular and often unpleasant reminders of how our bodies have changed, and are continuing to change.
I hope to raise awareness in this article of these two types of complicated grief in the hope it will help AS patients and their families/carers understand the emotional impact. Understanding emotions, being able to name feelings and experiences can often go a long way towards alleviating emotional stress, and even point you in a direction of an improved mental/emotional experience where possible, and knowing when to access support.
When there are obstacles to our survival our body’s nervous system prepares us to fight, flee, or freeze as part of a natural survival mechanism. In terms of historical context we would fight or run like crazy from the Sabre Tooth Tiger, a real and present danger. Freezing was never a good option with a tiger on your tail. When that danger was resolved we could then recover and our nervous system would engage in the rest and digest process. The move from one survival mechanism to another ensured a balance of a break from stress to allow our bodies to recover and regenerate.
In the previous article I mentioned research on the impact of chronic daily stressors. I’m sure you are connecting the dots here and realised that there can be a continuous arousal of our “fight, flight, freeze” system: triggered by ongoing physical symptoms; pursuing care and solutions; and worry about the present and future of our health. This continual stress response creates a loss of “recover and regenerate” in our emotional experience. However we can work with this in positive ways.
To start the awareness process I’ll list some perceived loss that could cause a grief response: not exhaustive by any means. A loss is a personal experience that relates to what you value.
Physical/health loss: agility, mobility, comfort (pain and stiffness), height, dealing with side effects of medication, appearance, sight, feeling well, wakefulness and energy, youthfulness…
Other forms of loss: favourite activities, keeping up with a partner or children, shared activities, sport, friendships may drift apart, employment, career, finances, autonomy, ability to drive, sense of control, dreams of the future being a certain way, memories of what was, current and future security…
This is all really important stuff in anyone’s life. You might notice that a family carer and other family members would experience many of the types of losses mentioned.
Unlike losing a loved one who has passed away, losses of a different nature can easily go unacknowledged, misunderstood, and even frowned upon by someone who is not having the same experience. This is where a patient’s emotional experience of chronic illness becomes Disenfranchised Grief: the emotional suffering can be internally amplified, or quashed to appear in another emotional form such as depression, anxiety, and sometimes anger. The same disenfranchisement can happen to a patient’s experience of Anticipatory Grief which is understandably expressed as anxiety about the future in very real terms: all valid.
The same applies to carers and family who feel intense loss in their own circumstances. Their loss is often disenfranchised and anticipatory as well, from whatever their experience is: also all valid.
So in an experience of chronic illness there are distinct and shared experiences of disenfranchised and anticipatory grief that, if brought to personal awareness, may be worked through and healed to some extent. The patient and carer would be encouraged to look deeply into their own perceived losses, acknowledging, accepting and bringing self-understanding. Along with this process it is also important for the patient and carer to appreciate and understand the other’s experience. Awareness, acceptance of reality, and an attitude of compassion is the starting point to potentially having a healthier mental and emotional experience of living with chronic illness. The situation or grief is not going to magically disappear. It’s our job to find healthy ways (healthy daily habits) to work through the process of life as it is. That is the most likely way for positive emotional change to occur.
There are many strategies for working with our grief. Let’s see if for sake 
of brevity we can put some ideas into 4 tasks (William Worden’s) that are often applied more globally to grief experiences.
- The first task: Accepting the reality of the loss – Acknowledge what your own perceived losses are. They are real and tangible to you including the non-physical and symbolic losses. Acknowledge and accept the reality of what you feel you have lost, or may lose, with deep care and compassion. Tears are OK. It’s natural to feel angry, disappointed, and even scared.
- Second task: Working through pain and grief. This means physical, mental, and emotional. Work through the emotional experience by acknowledging the depth of feelings you have, and at the same time work with your care team to do all you can to care for your physical and emotional needs in healthy ways. This goes for carers too. Self-care is critical. Being proactive within any limitations can give you a sense of power, autonomy, and ability to manage your life.
- Third task: Adjusting to the new environment – Adjust and adapt to your current physical capacity and circumstances. Remember the “incorporating new daily habits, one step at a time” article (available on my website). This includes finding new ways to do the things you love as well as the things you need to do. If you absolutely cannot do things you used to do, then it’s time to get creative and find some new interests within your capacity.
- Fourth task: Finding a connection with what is lost and moving on with life – In chronic illness I see this as evolving all three previous tasks into a new way of functioning day to day. Do more of adapting so that you can find new ways to physically and emotionally be with what is lost. Park the past in the past, love it for “then” and be with “now”. I’m sure you have made some wonderful memories to treasure. Visit the memories with joy and then concentrate on making new treasured memories here and now. Focus more on what you can do rather than what you can’t. Remember you have already acknowledged the past (in task 1) by accepting what you feel has been lost. If you are breathing, there is a future, and you will naturally plan as much as you can. The key is to keep returning to the present, address what you need to, and then focus on what you want to.
Look at the amazing role models of Christopher Reeves and Stephen Hawking. You don’t have to be a Hollywood actor to achieve these tasks. In fact Christopher Reeves acting career was over after his riding accident. He had to completely adapt his world – physically, emotionally, relationally to survive and experience satisfaction. He succeeded in doing that: his wife also had to make massive adjustments in finding new ways to be married to a man on life support.
Stephen Hawking found new ways to continue doing what he loved. His life was a great example of adapting to progressing chronic illness. Can you imagine the loss and grief both Reeves and Hawking had to accept and process to continue on to lead lives that felt meaningful to them?
This article’s aim is to guide people to identify and acknowledge the challenges faced through anyone’s level of disability, pain, or experience of all stages of chronic illness. Grief in chronic health diagnosis can be debilitating to someone who you might not even recognise as physically ill. If you are the patient I encourage you to not compare experiences with someone who is obviously in a different stage of illness. Simply acknowledge and work with your own physical and emotional reality to help you move through the challenges with some sense of peace and grace. Carers need to also acknowledge their own experience. Imagine the shared healing process if patients and carers could experience shared compassion. What healing doors could be opened?
Do seek support if anything in this article causes you distress.
