Despair is not something most of us want to talk about, but everyone facing disabling illness feels it at some point. Recently, I read a Facebook post from someone feeling profound despair over their situation, and I started to think about despair, how common it is when struggling with something permanently disabling, and how often I have felt it myself.

Even though I consider myself an emotionally well balanced person, and even though I have been on a personal and spiritual development path for over 30 years (yada yada), I have intense feelings of despair that arise when I think of my life situation, nearly 11 years of feeling so sick every day, feeling dizzy, weak, semi blind, nauseous, messed up digestive system, sensory overload, and pain, etc…

I think of the hours, days, and months I’ve spent lying in bed, too sick to watch TV or read, too sick to move, and too sick to be doing anything but lying in bed in misery. I think about all the things I miss, from small things like being able to go for a long walk or attend a music festival, to larger things like travelling the world, or fulfilling my fantasy of eating in a Michelin starred restaurant.  Then I feel sad that so often my life revolves around finding the strength to take a shower.

The black hole of despair really expands when I contemplate the seeming permanence of it all. Of feeling sick and being disabled every day for the rest of my life. It becomes all-encompassing and feels like the weight of the world.

The truth is that for me and for all of you out there with disabling illnesses and injuries, it is really hard. And it’s hard every single day. It is truly horrible. People may or may not get how difficult it is, especially for those of us with invisible conditions. We experience a lot of suffering and an enormous negative impact to our quality of life. It would be odd indeed if despair didn’t arise.

What can we do when we feel ourselves sinking or have sunk into that pit of despair? Well I have a few ways of coping, sometimes one method works better than another.

First of all, and before I go any further – if you’ve been stuck in despair mode for a while, it’s probably time to go see your doctor and discuss taking anti-depressants. If you’re feeling suicidal, call the suicide help line or get psychiatric help immediately. Once you have a little emotional space, you can start working on additional tools and ways of thinking about your situation to help with the despair.

People often tell me to counter those negative feelings by being hopeful, like somehow I should completely ignore the medical reality of my situation. I will admit as an eternal optimist I still don’t really believe I’ll be this ill for the rest of my life, but from a pragmatic reality perspective, that’s the probability.  So the hope thing just doesn’t work for me, it doesn’t make me feel happier, because I know it’s illusory. But if hope of a miracle cure helps you with the despair, go for it.

A few years ago I had a powerful experience (well, it was profound for me anyway) that has been very helpful with feelings of despair, and really all my negative emotions about illness. I was suffering a horrible flare-up and was in that state of lying in bed, and unable to do anything but feel horribly ill.

As I was lying there, I thought how grateful I was for my comfortable soft bed and that I had a safe and comfortable nest while I was so sick. And then I thought of all the people in the world suffering and in pain just like me, and who might not have the creature comforts I did. I imagined how horrible it must be for them to be physically suffering and in bad physical situations like being homeless, in refugee camps, or in war torn countries.

I felt a wish that I could do something to help – but I could not even make a cup of tea for myself. I thought of doing a formal compassion meditation, but I did not have the energy or focus. So I just imagined holding the hands of all those people suffering, not able to do anything for them, but just witnessing their suffering and being with them with love and empathy. After all, how could I not understand their suffering and wish for an end of their suffering when I was experiencing suffering myself?

Suddenly I noticed that I was feeling full of love, feeling loved, and filled with joy. For the next week as I was lying in bed feeling horribly ill I went in and out of that state. It was strange at first to physically feel so sick but at the same time feel so much love and joy.

I learned so much from that experience. I learned that my emotions are not 100% tied to experience. I learned that even though it is natural to have painful emotions when suffering, it is also possible not to have them.

I learned that if I had to choose between being physically well and mentally/emotionally miserable or sick and filled with joy and love, I would choose being sick (of course I would prefer to be well and happy!).

When I contemplated the despair and the joy – I looked at what triggered the despair and I realized it was thinking about the unending physical suffering. When I looked at what triggered the love and joy I realized it was a combination of a few things; being grateful for what I did have that was good in the middle of my suffering, thinking of the reality of others’ suffering, and really letting myself feel true empathy for their suffering.

It is easy to fall into the pit of thinking about the seeming permanence of our physical suffering. On one hand it is permanent, I mean really I’ve been sick for 11 years now. This is a very heavy thought. At the same time, it’s not really true.  On a moment by moment basis there is always some change within illness. Sometimes it’s better, sometimes it’s worse. And even when it is bad, there are moments of laughter and joy. The combination of underlying and unconscious beliefs that 1 – my situation is permanent, 2 – being sick is a horrible thing and so much worse than other things, and 3 – being sick means I can’t be happy or have good things happen in my life combine to create and keep me in that despair pit.

Instead, now when I feel that I’m on the edge or in that painful pit, I think of things I am grateful for and I try to focus my mind of empathy and compassion for others’ suffering. Their suffering may not be identical, but it is also suffering.

Sometimes I manage to get myself out of despair land quickly, and sometimes I don’t. When the despair of other negative emotions hang around, I have other things I do, but that’s for another blog post!