I hate hope. I really do. Every time I feel it, I try to squelch it. And there’s a good reason for this. Hope leads to disappointment, and disappointment leads to depression and suffering. You may think I’m being negative here, but I’m not. I’m being realistic and speaking 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 clobbering me about the ear, nose, and throat. I hate hope, and hope is dangerous. But there it is, again and again. So, I’ve tried to find ways to manage my hope such that its benefits can 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 this because you are alive. All things that are alive experience some degree of hope. It might be tiny. It might only exist in certain situations. It may go on hiatus for long periods. But hope exists somewhere deep inside, regardless.
I’ve gotten in touch with this hope and know that it keeps me alive. Sure, I might not feel it most of the time, but if it weren’t for hope, there’d be no point in being here at all. I have to believe 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 Hate Hope?
Most people love hope. Most people think that hope is the most important thing you can have. Most people think that there is something wrong with you if you’re not experiencing and espousing hope. And this is especially true when you’re dealing with illness or are disabled. Who hasn’t heard the myriad stories of cancer patients who “never lost 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 their hope” and ended up dancing at their wedding? Who hasn’t heard of the coma patient who wakes up because all those around them “had hope”? These stories abound, and make us feel deficient for being sick or disabled without hope.
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 and even take away your existence.
This is because when hope is dashed, it is soul-crushing. You see, far more people don’t beat the cancer odds. Far more people aren’t able to do a jig after they lose the ability to walk. People who doctors say won’t wake up from comas usually don’t. And it doesn’t matter how much hope those people or those around them have. So, when a person is pitting everything on hope, even though the incredibly long odds are against them, and then it becomes clear they will never beat those odds, it can be devastating to a lethal degree. This is especially true for those who have had their hopes destroyed time after time after time. And chronically ill patients are almost always in this group.
If you’ve ever stared down your 40th failing treatment, you know what I mean. That pain is unexplainable.
So yes, of course I hate hope. Hope is what leads to the unimaginable agony. And that unimaginable agony can lead to the kind of pain that leads to suicide. There isn’t a lot there to like.
Can’t You Just Not Feel Hopeful?
In my experience, hope exists, whether you like it or not. In fact, even if you’re not feeling it, it’s swimming under the surface. As I mentioned, I do my best to quell that bullshit immediately, but to born into us. Period.
I try to go into things like new treatments without hope. I try not to think of 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 were not good, but at least there was a chance. And I tried really, really hard not to think about it. I tried to go to every painful, awful appointment and not bathe in hope. I tried to just take it one treatment at a time. Do my job — show up, experience the pain, and call it a day. But fucking hope. Fucking hope was in my brain anyway, even though I didn’t want it there.
Then the very predictable thing happened: the treatment failed. I underwent the whole treatment series and got no response. And I promise you, this absolutely crushed my very being. I was more depressed than when I started because I had to contend with yet another failure. And no matter how much I tried to prepare for that possibility, the unimaginable pain happened anyway.
Hope fucking sucks.
Hope Has to Be Managed, Along with Your Expectations
And it could have been worse. Had I gone into that treatment, “sure” it would work, I would have been even more devastated. As it was, I had to give up visions of a contented life I wasn’t going to have. If I had higher hopes, the low afterwards would have been worse. I have seen this in people over and over.
So, if hope is so dangerous, but insists on existing anyway, what to do? The answer is simple: you must 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’re undertaking. I’m not saying you shouldn’t be hopeful. Hope by the soupçon is normal, and maybe even useful. But hope by the bucketful can get you killed.
How to Manage Hope
Try to base your hope on reality. If you’re chronically ill, if you’re treatment-resistant, that reality isn’t pretty. But while it’s not pretty, it is protective.
For example
- Ask for realistic expectations. With your doctor, focus on what is likely to happen, along with the best- and worst-case scenarios. Yes, you can find out about the best-case scenario and hope that’s you, as long as you understand it probably won’t be.
- Manage the expectations of people around you. Others have no idea what is likely to happen when you get treatment and might assume it’s a sure thing. Temper their hope and expectations with a realistic view.
- Don’t let the perspective of others who are overly enthusiastic sway you. Being around a bunch of people who assume you’re going to get better will just put added pressure on you in a situation in which you have no control. It will also make you feel worse when the best doesn’t come to pass.
- Don’t feel bad about not beaming hope through the rafters. Others haven’t been where you are. They aren’t you. They don’t have to deal with the fallout of the treatment’s effects. You do. You handle that the best way you know how. You get to hate hope if you want. You don’t have to defend it.
And finally, if your hopes are dashed and you’re feeling wounded, even though you tried to walk forward with open eyes, don’t beat yourself up. It’s very normal to feel terrible when a treatment doesn’t work. It’s very human to feel bad when your hope gets crushed. It’s okay. What you need is self-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 the position hope has gotten you into, don’t give up on life. Don’t give up on trying. I’m not a spectacular example of treatment success. I am a spectacular example of continuing forward. There’s a lot you can do even without a fabulously effective treatment. Yeah, I’d prefer if treatment were better, too. But even when it isn’t, moving forward is possible. 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 back, and you will be able to try again. Eventually.
