To hope or not to hope when living with chronic illness

For some, hope is vital to get through the days, while for others it’s a drug that prevents presence. Neither is right or wrong.

Hope is a sensitive subject for many of us living with chronic illness. For some, giving up hope and accepting their situation as it is can be liberating. For others, the hope of one day being cured, or at least better, helps them get out of bed each morning.

Both are valid and both are excellent ways of navigating the suffering of living with chronic illness. This blog post is in no way a judgment of whether to let go of hope or not, I simply want to explore hope as I have had periods where I felt liberated by letting go of hope, and I have had periods (I’m in one right now), where letting go of hope does not serve me in any way.

In Buddhist philosophy hope is a mental state that causes distress, because it forms an attachment to a specific future outcome. As human beings, we all have expectations and desires, and when we’ve held on to them tightly and they do not come to fruition, we suffer. But if expectations and desires can be released and let go of, a person will be more content and suffer less.

This is not to say that we should not have goals, according to Buddhist philosophy, but to not become attached to them or cling to them, make our entire lives dependent on them. A bird in the hand is a helpful image. If we cling to the bird we will crush it, and it will die, but if we open our hand and thereby release our hold on the bird, it is free to fly or stay if it wants. At least it won’t die.

Buddhist teacher Pema Chodron, in her book When Things Fall Apart, writes:

“If we’re willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation. This is the first step on the path.”

She also writes:

“Without giving up hope—that there’s somewhere better to be, that there’s someone better to be—we will never relax with where we are or who we are.”

She is talking about being one with our experience.

I have found lately, however, that I can be at one with my experience, be fully immersed in the pain and allow the pain, while still allowing for hope of better days. I may never become a Buddhist nun, but right now, this works for me. 

I need hope, and that is not a bad thing, neither does it cause suffering for me. I also have hope. Right now, it doesn’t work for me to let go of hope. If I let go of hope I’m staring down a future where I won’t be properly cared for because my elderly parents can’t take care of me forever, and the Danish care system is in crisis and is broken.

When I had moderate ME, it worked for me to let go of hope, to fully accept my situation and find a sense of peace with it. I am not saying that letting go of hope or not is necessarily contingent on our level of health, this is simply my experience.

The Buddhist teacher Tara Brach has a great description of the kind of hope I am working with these days: Wise hope. She explores this in her podcast and says (my transcription):

“I know the power of wise hope. I know how it’s a source of energy, inspires me to engage and to serve and to keep waking up… and given the trajectory of much in  the world right now… I can watch how that wise hope gets clouded over by grimness and anxiety… It feels like a really important juncture not to ignore wise hope and that means not to ignore real and immediate challenges we face, but also to remember the larger truths and the possibilities that can guide us.”

I can be critical of the fact that there are not enough medical drug trials for ME patients right now, I can be critical of whether Long Covid research really will have a spillover effect onto ME research, I can be critical that the few drug trials out there haven’t found great ways of including the house and bedbound patients. There are lots of things I can be (and am) critical of. I can also see that progress being made is too little, too slow. I can see that we aren’t being heard the way we should.

But at the same time, I can see the potential of our community to create change. I see the potential of the great scientists working with our community to find solutions. At the same time, I also feel the grief that I don’t have the energy to do more advocacy work. And so the seesaw of my hope goes, up and down, back and forth every single day. And that’s ok.

Where are you right now? Nourished by hope or are you doing best wihout it? Let me know in the comments below.

I don’t want any of my chronically ill friends to feel judged whether they are holding on to hope, choosing to hope, needing to hope, hoping for miracles or have let go of hope, are feeling hopeless, or down right given up. And I hope that all of our able bodied allies can hold space for us dealing with how to navigate hope, that we one day may feel full of hope and another day feel ready to give up. We hope you love us regardless. There is no right or wrong, no more or less evolved way when navigating hope.

One last thing: If you enjoyed this post, then please click the heart-button, leave a comment or share it with friends. It would mean the world to me and it helps my writing be discovered by more people.