Hope in chronic illness: That absolutely necessary but sometimes elusive concept.
I had intended to write about grief in chronic illness but my health took a turn for the worse with yet another episode of CSF leaks (hence a huge delay in my blog output). Those of you familiar with CSF leaks - or those of you who simply know what it's like to feel really, really awful with no respite in sight - you also know how easy it is to lose hope, especially if your medical care is below standard. Thankfully, in my case, with the help of a skilled neuroradiologist, I'm now back on the road to good self-management and much improved quality of life. I feel, yet again, hopeful. So, let's talk about hope for a bit and leave grief for another day.
So, I've recently experienced quite a major bump in my ever present, complicated relationship with illness. My quality of life has been absolute crap despite my best efforts. I've had endless issues where nothing I did appeared to provide any relief whatsoever. This is not new to me. Indeed, I've been here before. Quite a few times actually yet each time, a quiet sense of despair sets in and my future seem very uncertain and bleak. Basically, I start to lose hope. I personally cope well with uncertainty but uncertainty without hope is not a doable situation in my book.
By hope, I mean the belief that a situation will improve and that there is some kind of meaningful future out there. In the scientific literature, we know that hope is strongly associated with better mental health outcomes (e.g. lower levels of stress, depression, anxiety and fear). We also know that adults high in hope are better able to navigate their illness and tolerate physical pain. Hope can increase self-esteem and an optimistic attitude. People high in hope are also more likely to find life meaningful. So, while I was thinking about the importance of hope in chronic illness, I came across, quite by accident, the beautiful poem 'Hope Is The Thing With Feathers' by Emily Dickinson. Let's read some poetry!
“Hope” is the thing with feathers -
That perches in the soul - And sings the tune without the words - And never stops - at all - And sweetest - in the Gale - is heard - And sore must be the storm - That could abash the little Bird That kept so many warm - I’ve heard it in the chillest land - And on the strangest Sea - Yet - never - in Extremity, It asked a crumb - of me.
As a metaphor, this poem likens the concept of hope to a feathered bird that is permanently perched in the soul of every human. There it sings, never stopping in its quest to inspire. It gives us strength to carry on even in the most adverse of conditions. But it also assumes that hope is difficult to disturb even when life gets hard. It assumes that hope is an ever present and available resource, always there to help us out. Is that true? I would argue, no. I love this poem but hope is sometimes a very elusive concept when living with a chronic illness. Indeed, I wish hope was perched in my soul permanently, singing beautiful tunes whenever I need it but that is simply not true. Loss of hope; moments of despair, periods of depression and frustrations are all common in people with a chronic illness, me included. It's how you deal with it, and the support you receive, that matters.
A chronic illness that's not controlled well medically can leave us feeling lost when we are no longer able to do the things we used to enjoy doing, even the little things. We may find it really hard to control our symptoms (poorly managed pain is the biggest hope killer in my book). Perhaps we lose friends, our employment and become socially isolated and with that, we may lose our sense of identity and a sense of meaning and purpose in our lives. Perhaps our support system isn't what it used to be. A decent quality of life may seem like a distant concept. So, what are we left with? How many times do you re-frame a new normal in a meaningful way while your life seems to be getting smaller and smaller? Indeed, when is hope futile? Whatever your situation is, we can all agree on one thing; when faced with enormous future uncertainty, it's sometimes really hard to muster up a hopeful attitude, period.
The actor Michael J. Fox said recently in a New York Times article: "My health issues last year brought me to places where I started to say, “Was it false hope I’d been selling? Is there a line beyond which there is no consolation?” I realized that the understanding I’d reached with Parkinson’s was sincere but risked being glib. I’d made peace with the disease but presumed others had that same relationship when they didn’t. Then when I started to deal with the effects from the spinal surgery, I realized: Wow, it can get a lot worse. Being in a position where I couldn’t walk and had health aides 24 hours a day, was I still prepared to say, “Hey, chin up!” There's no point in pretending that this isn't a place many of us go to for very understandable and rational reasons. However, as physician and author Dr. Bruce (BJ) Miller so eloquently put it, "hope is a powerful force but it needs to be used thoughtfully - false or unrealistic hope can be a set up for more disappointment. When thinking about hope, it's important to frame it. Hope for what?" This can be really helpful during difficult times especially if you feel you've lost control over your own self-management and your physical and psychological health seems to be spiraling out of control.
So, who do we turn to when hope is lost? In my case, it was a medical doctor that restored my hope. I needed medical interventions to stop my spine from leaking, and for the disabling pain associated with that, to stop. But it was not only his medical skills that instilled hope in me. He was also kind and very willing to problem-solve on my behalf. Indeed, kindness and compassion can also inject a sense of hope into a miserable situation. Others may need to activate emotional and practical support from willing friends and family members and cultivate those relationships further. Knowing that you matter in people's lives can bring on a sense of hope and a reason to wake up in the morning. Some may turn to their faith for spiritual support or focus on building a stronger relationship with a higher power or their faith community. In general, we should all try to surround ourselves with 'high-hope' people because hope can actually be quite contagious!
In their book 'Hope Rising' Casey Gwinn and Chan Hellman describe hope as "the belief that your future can be brighter and better than your past and that you actually have a role in making it better." Hope is based on our ability to accurately appraise the reality of the situation, set goals and find the means to achieve those goals. That suggests that people have some control over whether they feel hopeful or not. Does that mean we can actually do something to increase hope? Yes, we can! There are evidence-based approaches that can generate a hopeful attitude and if this is something you think you could benefit from, I would recommend that you work with a psychologist to assist you with that. In fact, improving people’s hopeful attitude can also generate a sense of self-efficacy, i.e. the belief and confidence that you have the power to create change in your life. Hopeful people are indeed better at regulating their emotions, thoughts and behaviours, and that's pretty handy when you live with a chronic illness.
In people whose physical health is poorly managed, improving their hopeful attitude means supporting them in reaching their goal of obtaining better medical assistance and thereby improved quality of life. This can be done by helping them find the motivation they need to go through various help-seeking pathways. Once the goal is achieved (whatever that looks like), it's amazing how quickly hope returns. However, I'd like to acknowledge that for many people with chronic illness, especially those with rare and poorly understood conditions, this process can be really hard and lead to repeated failures. Experiencing repeated failure to achieve improved health and better quality of life can lead to a loss of hope that looks like anger, despair, frustration, sadness and apathy. The latter is a state of complete hopelessness. These are all natural reactions to a miserable situation. I do think this is why 'hope' can be so elusive in chronic illness because it often seems like 'help' is an elusive concept too. People who are struggling with an illness shouldn't have to struggle to find help but that is, unfortunately, a reality for many. This is where you do need some really good and consistent (and possibly professional) support to help you navigate your situation to achieve a successful, but realistic outcome. I will probably write more about this in a future blog because it's serious and very important.
I'd like to end by saying that we all need to have some meaning and purpose in our lives; something to do, something to look forward to and someone to love (and hopefully be loved back in return). Without that, our lives are pretty grim. Hope gives us a sense of belonging in this world. A sense of having a place at the table. Something to live for. Knowing that someone will always have your back. Knowing that there's help out there when you need it and knowing that you have the ability to elicit that help should you need to. Hope gives us inspiration! It motivates us. When we have hope, we cope better with the uncertainty that comes with chronic illness. The future doesn't seem so dark and scary.
What's your experience with hope in relation to your illness? How do you keep hope alive during difficult times? Please let me know in the comment section below. I'd love to hear from you!
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Dr. Ingela Thuné-Boyle is a licenced Practitioner Health Psychologist specializing in improving the quality of life of people living with a long-term illness. 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 of following their information and advice on this blog.