I hate hope. I really do. Every time I feel it, I try to squash it. And there’s a good reason for that. Hope leads to disappointment and disappointment leads to depression and suffering. You might think I’m being negative here, but I’m not. I am a realist and speak from experience. If you have treatment-resistant bipolar disorder (or anything else), you know what I mean. I feel like hope is a mirage that ends up nagging at my ear, nose and throat. I hate hope and hope is dangerous. But there it is, again and again. So I tried to find ways to manage my hope so that its benefits could persist without its negatives killing me.
I hate hope, but hope is real
Hope is a real thing, and I know you experience it. I know because you are alive. All things that are alive experience some degree of hope. It can be tiny. It can only exist in certain cases. It can remain paused for long periods of time. But hope exists somewhere deep inside, regardless.
I have come in contact with this hope and know that it keeps me alive. Sure, I might not feel it most of the time, but if there wasn’t hope, there would be no point in being here. I have to believe that there may be a day out there in the future that is better than this day in the present. And that is hope, in all its irritating glory.
Why should I hate hope?
Most people love hope. Most people believe that hope is the most important thing you can have. Most people think there is something wrong with you if you don’t experience and embrace hope. And this is especially true when you are dealing with an illness or are disabled. Who hasn’t heard the myriad stories of cancer patients who “never gave up hope” and beat the odds? Who hasn’t heard of that person who was told they would never walk again, only to find they “kept hope” and ended up dancing at their wedding? Who hasn’t heard of the coma patient who wakes up because everyone around him “had hope”? These stories abound and make us feel inadequate because we are hopelessly ill or disabled.
But here’s the secret no one ever tells you: hope can kill you. I’m not exaggerating. The impact of hope absolutely has the power to destroy or even take away your existence.
This is because when hope crumbles, it crushes the soul. You see, far more people are not beating the odds of cancer. Far more people can’t do a jig after losing the ability to walk. People who doctors say won’t wake up from a coma usually don’t. And it doesn’t matter how much hope these people or those around them have. So when a person puts everything into hope, even though the odds are incredibly stacked against them, and then it becomes clear that they will never beat those odds, it can be fatally destructive. This is especially true for those who have had their hopes dashed at times. And the chronically ill are almost always in this group.
If you’ve ever looked at your 40th failed treatment, you know what I mean. This pain is inexplicable.
So yes, of course I hate hope. It is hope that leads to unimaginable anguish. And this unimaginable anguish can lead to the kind of pain that leads to suicide. Not much to like.
Can’t you not feel hope?
In my experience, hope is there whether you like it or not. In fact, even if you don’t feel it, it’s swimming beneath the surface. As I mentioned, I do my best to immediately suppress this bullshit, but it is born within us. Period.
I’m trying to get into things like new treatments without hope. I try not to think about what it might be like if this treatment works. I try to literally ignore the possibility of success because I know what happens when failure rears its ugly head. And in my case, failure is the most likely outcome. Just ask one of my many doctors.
Recently, I underwent a round of repetitive transcranial magnetic stimulation (rTMS). This treatment had a better chance of working than any treatment I had tried in years. The odds weren’t good, but at least there was a chance. And I tried very, very hard not to think about it. I tried to go into every painful, awful date and not bathe in hope. I tried to only take it one treatment at a time. Do my job — show up, experience the pain, and call it quits for a day. But damn hope. The fucking hope was in my head anyway, even though I didn’t want it there.
Then the very predictable happened: the treatment failed. I went through the whole course of treatment and got no response. And I promise you it absolutely crushed my very existence. I was more depressed than when I started because I had to face yet another failure. And no matter how hard I tried to prepare for this eventuality, the unimaginable pain happened anyway.
Hope sucks.
Hope must be managed, along with your expectations
And it could have been worse. If I had gone ahead with this treatment, “sure” it would work, I would have been even more devastated. As it was, I had to let go of visions of a contented life that I wasn’t going to have. If I had higher hopes, the low after would be worse. I have seen this in people time and time again.
So if hope is so dangerous, but persists anyway, what are we to do? The answer is simple: you have to manage your hope.
This means having a very clear conversation with yourself every time you experience hope. It means having a very honest and realistic expectation of what you are undertaking. I’m not saying you shouldn’t hope. Hope by the soupçon is normal, and perhaps even useful. But bucket hopes can kill you.
How to manage hope
Try to ground your hope in reality. If you are chronically ill, if you are resistant to treatment, this reality is not pretty. But while it’s not pretty, it’s protective.
For example
- Hooray realistic expectations. With your doctor, focus on what is likely to happen, along with the best and worst case scenarios. Yes, you can learn about the best case scenario and hopefully it’s you, as long as you understand it probably won’t be.
- Manage the expectations of the people around you. Others have no idea what is likely to happen when you receive treatment and may assume it is a sure thing. Temper their hopes and expectations with a realistic view.
- Don’t let the prospect of others being overly enthusiastic fool you. Being around a bunch of people who assume you’ll improve will put added pressure on you in a situation you have no control over. It will also make you feel worse when the best doesn’t happen.
- Don’t feel bad about not beaming hope through the rafters. Others have not been where you are. It’s not you. They do not have to deal with the consequences of the effects of the treatment. You do it. You handle it the best way you know how. You can hate hope if you want. You don’t have to defend it.
And finally, if your hopes are dashed and you feel hurt even though you tried to move forward with open eyes, don’t beat yourself up. It’s very normal to feel awful when a treatment doesn’t work. It is very human to feel bad when your hope is crushed. It’s okay. What you need is compassion and kindness, not self-flagellation.
Don’t give up
And now I’m going to tell you something you need to hear but don’t want to: don’t give up. No matter where hope has landed you, don’t give up on life. Don’t give up trying. I am not a spectacular example of treatment success. I am a spectacular example of moving forward. There’s a lot you can do even without a highly effective treatment. Yes, I would have preferred the treatment to have been better as well. But even when it isn’t, it’s possible to move forward. It’s okay to take a moment and lick your wounds. It’s okay to feel bad. Just keep going. Believe it or not, your hope will grow again and you will be able to try again. Finally.
