Grief in chronic illness. Yep, grief happens there too (and no one's died).
Grief is usually associated with a single event such as the death of a loved one. However, in chronic illness, grief is also very prevalent despite the fact that no one has died. It can be an ongoing issue and is usually associated with many types of losses. Despite this, people don't often associate chronic illness with grief but the realization that life will never be what it was, and the future is not what you thought it would be, is a major loss. Any dreams you may have had, and any plans you might have made, have fallen on the wayside. No one has died, yet that's grief, right there! Indeed, grief is a normal part of living with a long-term illness and can be a resurfacing cloud that surrounds you as life takes you in directions you never wanted to go.
In a previous blog article, I wrote about the importance of acceptance in chronic illness (you can find it here). I mentioned that to reach acceptance (letting go of the struggle), we must grieve our losses. Grieve for the life we thought we would have; grieve for all the lost days; grieve for all the things we are now unable to do; grieve for the loss of friends and relationships; grieve the career we had to give up and perhaps the loss of financial security that comes with that; grieve the loss of identity (who you were before your illness), the change in physical functioning or perhaps even our physical appearance; grieve the loss of future opportunities and the dreams and expectations we might have had around that. We also have to accept the fact that grief in chronic illness usually tends to resurface time and time again with many ongoing, and sometimes devastating, losses along the way. Unfortunately, that means that it can sometimes feel like a never-ending struggle of sadness and despair.
Common losses people experience within their illness framework - many of which are mentioned above - can be categorized as belonging to four different areas: loss of identity, loss of safety, loss of autonomy, and loss of dreams and expectations. For example, whenever a person loses their sense of identity, they mourn a lost sense of self. That means they’re tasked with grieving who they used to be and eventually create a new story that integrates that loss into their personal narrative. A lost sense of safety and autonomy could mean the lost ability to manage one’s own life and affairs. For example, a person with a degenerative illness may have to grieve the loss of physical abilities or a lost sense of autonomy because they are now forced to rely on other people’s help. A person suffering from a profound financial setback as a result of an illness may experience this same feeling of loss along with a sense of failure or despair. Loss of autonomy may trigger grief over a lost sense of control, and new forms of physical decline may invite grief over a loss of independence. The loss of dreams and expectations may be characterized by a deep sense of disorientation; most of us carry a vision of what our future should look like. When life events violate our expectations, we can experience a deep sense of grief and a profound sense of unfairness.
Megan Devine, the author of 'It's OK that you're not OK', said that "Grief is not a problem to be solved, it's an experience to be tended." Indeed, grief is very much a normal response to loss but that doesn't mean we should ignore our suffering. Instead, we can process our losses and the only way to do that is to face the pain. In fact, processing grief in chronic illness is an extremely important part of emotion regulation (i.e. the ability to exert control over one's own emotional state) and gaining some form of acceptance. It can move us towards a sense of illness mastery and thereby an improved quality of life. There are several helpful ways to process grief. I will talk about three evidence-based approaches here: using mindfulness techniques, expressive writing and receiving support and validation.
Mindfulness techniques. Mindfulness is the practice of being aware of all the different elements of the present moment but from an objective, non-judgmental stand point. It means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations and even the surrounding environment through a gentle, nurturing lens. Using mindfulness techniques allows the griever to observe the pain without being overwhelmed by it. The act of being present with pain and being mindfully observant is indeed helpful as it allows the painful emotion to surface and eventually shift through to acceptance. We simply allow it to be there without struggle. The non-judgmental awareness and acceptance that are hallmarks of mindfulness can help the griever ride the waves of grief and ultimately redirect the pain toward emotional and spiritual growth if that feels appropriate. Overall, practicing mindfulness eventually helps to reduce the intensity and longevity of symptoms. However, it has to be practiced systematically like any new skill.
Grief and a sense of acceptance may also come and go, perhaps as the illness progresses and new symptoms appear. Indeed, processing grief through mindfulness is not a linear process. It's an ongoing process of self-management and adapting to new situations. It's also important to point out that acceptance does not mean resignation or that something's okay. It means accepting thoughts and emotions as they are at any given moment without judgement, and thereby becoming more flexible within the illness framework by letting go of the struggle while, at the same time, working towards realistic solutions.
Expressive writing. There is plenty of evidence that writing about our losses can be really helpful. Indeed, one really good way of processing grief is through the practice of 'Expressive Writing'. Expressive writing is personal and emotional writing without regard for punctuation or other technical aspects of writing. You simply put down your thoughts and feelings on paper without worrying about the quality of the writing. Some research even suggests that disclosing deep emotions through writing can not only process grief but it can also boost the immune system, improve mood and increase psychological well-being. Conversely, the stress of holding onto strong feelings can increase blood pressure and heart rate, and can cause painful muscles tensions.
If you decide to keep a journal to help you process your losses, there are several things to keep in mind before you start.
Writing about grief can trigger strong emotions (you may cry or feel deeply upset) but many people find expressive writing valuable and meaningful, and usually report feeling better afterward.
Write down how you feel and why you feel the way you do.
Remember, you're writing for yourself, not for others. Don't worry about grammar or sentence structure.
One review found that journal writing is more helpful when it extends over several days; try writing for 15 to 30 minutes a day for three to four days, or as long as a week if you can. You could also try writing for 15 to 30 minutes once a week for a month if you prefer.
It's also worth remembering that deeply troubling situations linked to thoughts of suicide are best explored with the help of an experienced psychologist or therapist. Indeed, you might want to seek professional help before writing should this be an issue for you.
Receiving support and validation. Receiving good support from a trusted friend or family member always makes life more bearable when grieving the losses of a chronic illness. However, for those attempting to support you, it's important they recognize that it's probably not helpful telling someone to look on the bright side or finding something good in their situation, at least not in the early stages of loss. Often, we simply can't fix what's happened (the illness is probably not going away and the losses are often permanent, definitely real and very valid) and therefore, if we attempt to cheer someone up or tell someone to count their blessings, we can potentially make things worse. Indeed, in terms of supporting someone in grief, acknowledgement is usually a much better approach. Acknowledgement makes things better even when things can't be made right.
When a giant dark hole opens up in someone's life (e.g. a diagnosis or deterioration), it's actually much more effective to simply acknowledge the hole and let the pain exist. Indeed, in order to support someone, you have to acknowledge that things are really as bad as they are. Acknowledgement validates someone's experience. Conversely, if you try to cheer someone up, they may end up feeling that their situation has been minimized and that no one understands. Or they may feel like they constantly need to explain or defend themselves. And if you attempt to give advice, they may feel misunderstood instead of supported. When someone shares something about their pain, it's much better to say, "I'm sorry this happened to you. Can you tell me about it?" It's also easier for people to reach a place of acceptance when they know someone is by their side without trying to fix what is often unfixable.
So, grief isn’t a problem to be solved but something we acknowledge and eventually learn to carry. We do that through processing our grief which may not be a pleasant experience but the alternative means struggling and being consumed by it. Indeed, Megan Devine talks about finding a middle ground. The middle ground is the place that doesn’t ask us to deny our grief, but it doesn’t doom us forever either. And everything always becomes more bearable with a large dose of decent support. Indeed, support plays such an important role in chronic illness, whether it's emotional, practical, medical or spiritual. And if you don't have anyone that you feel can support you, make sure you seek professional help. Indeed, just being able to talk about your losses with a licensed psychologist or therapist can be extremely helpful. Knowing that someone is truly there to listen with curiosity, compassion and kindness is a game changer. Without it, we're in trouble.
If this is something you’ve been affected by, please leave a comment below. If there’s something important you’d like to add, please do so. I'd love to hear from you.
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Dr. Ingela Thuné-Boyle is a licenced Practitioner Health Psychologist specializing in stress and loss, especially in improving the quality of life of people living with long-term health problems. She lives with Ehlers-Danlos Syndrome, a connective tissue disorder, and runs a private online (telehealth) practice at www.ingelathuneboyle.com.
Please note: Advice given in this blog is not meant to take the place of therapy or any other professional advice. The opinions and views offered by the author is not intended to treat or diagnose, nor is it intended to replace the treatment and care that you may be receiving from a licensed physician or mental health provider. The author is not responsible for the outcome or results following their information and advice on this blog.