How to keep hope when you know how bad it can get (hopeful replies only)

January 14, 2022 3:22 PM

I'm 32, and I've had health issues since I was 21. I'm running out of steam. How can I stay hopeful and not give up when I have nothing left.

It's nearly impossible to explain all the intricacies of my situation and reasons for hopelessness. Between that and the fact that its gone on so long, I tend to just keep it to myself.

But I have been immobilized with hopelessness the last week, and I'm not in a good place.

I have such sadness that I can't live the way I want to. And I've had so many demoralizing set backs lately that have left me feeling more defeated than I know how to handle.

I'm looking for hopeful ways of thinking, even hopeful stories, ways of coping, that can take the edge off. It might help to know I'm not religious but am open to spiritual thoughts.

posted by ygmiaa to Human Relations (15 answers total)

I'm right there with ya, honey. Decades of lousy health, fascists on the march, flat on my ass and wondering how the hell to go on. Oy, this life.

It's essential to have goals, and human connection. Focus on getting things done that will matter to you. Try to resist the little tiny gratifications that will scratch the itch without treating the rash. I'm thinking of a Youtuber who did a video about how he hadn't uploaded anything for many months because he'd been in a depressive spiral. He was spending all day playing some little Tetris-y game on his phone, sustaining himself on these little dopamine hits while his life fell apart around him. Whatever your little Tertis-y thing might be, try to put it aside and focus on things that will actually improve your circumstances.

If you have people you love, seek them out. Let them know you're hurting, and seek solace in their company. Get snuggles. We are monkeys and we need our snuggles. If you don't have anybody in your life, consider volunteering. Put some good, kind energy into the world, and you'll get some back. Also, get therapy. Even if you think you can't afford it, there are ways to make affordable therapy happen. After I talk to my shrink I always feel like I've lost 10 pounds of evil crap. Some weeks 10 pounds aren't nearly enough, and some weeks I've gained 20 since I lost the last 10. But Jesus, if I wasn't regularly shedding the 10 I think I'd probably be a big crap monster by now.

Give yourself some credit for not being evil. People have been evil with a lot less justification than you've got. Trump is a rich, rich man who never worked a day in his life, and he is the biggest crap monster walking. If you're still trying to keep hope alive instead of just spewing evil all over everybody, that says something about what you're made of.
posted by Ursula Hitler at 4:00 PM on January 14, 2022 [22 favorites]

When I am feeling despair about the big things I find it helpful to take solace in the small things. A tree outside my window. The fact that I have a soft place to lie down, and clean water to drink. Keeping it real and in the moment can be comforting when the entirety of the arc of my life is to huge and overwhelming and at that moment to sad to deal with. The small things can be very comforting.
posted by Winnie the Proust at 4:28 PM on January 14, 2022 [5 favorites]

Ygmiaa, I'm sorry you are suffering. I don't know what to say that can help but we are here for you. Forget the health issue for this second. Can you reach out to a friend to help you get some treatment for depression? Drugs really really really do help. Don't suffer or white knuckle it. The people around you REALLY want to help you. It sounds like you many be getting treatment for other health issues--can you mention to your doctor that you need some help? Or so you have a friend or family member to talk to? Sending you a hug--we care!!

(Also, sounds dumb but pets help....can you get a pet?)
posted by biscuits at 5:04 PM on January 14, 2022 [1 favorite]

Big hugs. Living with illnesses for a long time becomes a very different normality and - well it's hard. Lots of possible futures are suddenly shut and the day to day work of handling the illness, the uncertainty over how it will progress of flare-up - it makes planning for the future incredibly difficult. And it is so private - other people in your life who are relatively healthy think of sickness as something temporary and don't quite get it, even though they care.

Therapy and medication help - I'm on an anti-anxiety med that's made life much calmer. But you might already be doing that!

So for me: I am optimistic by nature because it was a survival method for a very bad childhood. I think it's a hugely important skill for resilience, a determined sense of optimism. Part of that is deliberately looking for nice things about people, and being generous with compliments and praise. It can feel very false and awkward at first but it helps reorient your brain towards looking for good things. I don't do a gratitude journal because I am undisciplined, but I do deliberately in bad situations look for and point out to myself and others good things. This can be very irritating to other people who are focused on negatives, but I have to be positive because so many things in my day to day life are objectively shitty.

I have a tumblr that is full of happy things to look at and let myself browse as much as I like. During bad patches, I will read happy-ever-after romances and mystery novels that end with justice. I watch a lot of dumb sitcoms and comedies, and avoid Serious Art when I'm down.

I have pets which help enormously - having someone always happy to see you and who depends on your daily routine is very good.

I write to a group of friends on dreamwidth and am fairly open about how bad things are. Many of them have chronic illnesses, so their sympathy and advice is genuine and helpful, and because we've been journaling for so long, we know each other's lives and don't have to explain things.

I am self-indulgent. To regular people, I look quite lazy and so on, but I decided about five years ago to stop caring and to just do what my body and mind wanted which is to be on the couch and drink coffee and read books. Going out and being sociable and doing exciting things - exhausting, and rarely worth the swing back on my health.

It is sad to not be able to do so many things - you may be at the time of grieving over the promises of adulthood, the possibilities that are lost to you. You may feel robbed by your illness. That is a very real and hard thing to live with. It sucks, it is a loss and it is a solitary private loss that you have to bear. Envy of other people is also bitter.

But this life that you will make with all its limits, it can be a rich and beautiful life too. I am super religious but I don't believe suffering in itself has any virtue. Suffering is unevenly distributed in this world, and it is absolute fucking rubbish. But you have to stumble up and find the unbroken or merely chipped parts of the wreckage and build something new with them.

Memail me if you want to talk.
posted by dorothyisunderwood at 6:47 PM on January 14, 2022 [12 favorites]

This quote always helps me when I’m low on hope:

“TO BE HOPEFUL in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness. What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places—and there are so many—where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction. And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory.” —Howard Zinn
posted by farkleberry at 7:13 PM on January 14, 2022 [20 favorites]

Um, YMMV but IME, pharmaceuticals (prescribed or otherwise) can have a fairly significant impact. Like, um, TBH, "where have you been all my life? Holy shit!" type of impact.

(which doesn't imply they work for everyone, and some can be ... evil ... if taken too much or for too long.)

(also, to be frank, I am a fan of chemistry generally so, again, YMMV)

There are communities online where you can figure out which compounds are likely to work for you.
posted by aramaic at 7:53 PM on January 14, 2022

I have been sick for decades and while I may get better there’s no expectation that I’ll ever be well.

Toni Bernhard’s How To Be Sick and How To Live Well With Chronic Pain and Illness quietly saved and then shaped my life for the better.
posted by congen at 8:17 PM on January 14, 2022 [3 favorites]

Last year I read The Sound of a Wild Snail Eating by Elisabeth Tova Bailey, and found it to be remarkably uplifting. The author still deals with a chronic condition that, at one point, left her unable to do more than lie down in bed. She couldn't even sit up for any length of time without passing out. She ended up with a wild forest snail in a terrarium beside her bed, and was engrossed in its tiny life. One bit I found especially interesting was near the end of the book, when she is able to return to her own home. As she gained in strength, it took more and more patience to watch the tiny snail go about its slow business. What used to be utterly fascinating was now a bit of a chore to watch for any length of time.

I suppose what I'm trying to say is, maybe you can find some small focal point to bring cheer to your days. And then perhaps in time you'll "outgrow" that tiny point, but it will have served its purpose. Maybe a simple hobby, or a houseplant, or writing postcards, I don't know. I have a bird feeder that holds enough food for a couple weeks, so even when I can't be bothered to go out and do anything or see anyone, the birds still come and flap about in their cheery way.
posted by dorey_oh at 10:09 PM on January 14, 2022 [4 favorites]

I am sorry for your suffering and pain. I wish I knew you so I could bring you one of those balloons shaped like a dog, with the little trailing paper legs.

I’m exactly your age and have recently had a lot of health issues but not for anywhere near as long as you have. I can’t even imagine.

Things that have helped me are:
Cats. Giant blankets. Hot chocolate that tastes like candy bars. Exercise. Stories of Holocaust survivors who have been married for 80 years. Flowers. Fredrik Backman’s books that will restore your hope and faith in the world. Watching the snow outside. Therapy. Videos of excited guinea pigs.

I am cheering for you. 🎈 🐶
posted by oywiththepoodles at 10:22 PM on January 14, 2022 [4 favorites]

I found A Still Life by Josie George surprisingly helpful. It's basically an entire book of "My life is not the life I expected or wanted, it's smaller and harder than most people would consider acceptable, but here's how I've found that I value and enjoy it anyway." There's no false optimism or Pollyanna nonsense, but a lot about staggering from one tiny moment of joy to the next and stringing that together into a life.
posted by BlueNorther at 2:40 AM on January 15, 2022

Something like depression can actually make any physical you pain feel worse, triggered, or "outsized." I think coping with the depression (if that is an issue!) could be beneficial, however that looks for you.
I have a history of chronic pain and bullshit dx's; my chronic pain flares rarely nowadays since I began to really dig deep into the root of some emotional pain that was latent. It's hard and feels like 2 steps forward, 1 back at times, but gradually has really been profound.
In the deeper parts of the pain, I told myself I was a "well pwrs with pain"-- so as not to let the pain define me, which was really disempowering for me. It takes practice. But there is hope: you and your life are infinitely worthy.
A fact I learned today that is hopeful: many coral reefs that underwent coral reef bleaching in 2016 are recovering, and that is very exciting. And new technology is being utilized to spawn new baby corals in lab settings. So exciting!
posted by erattacorrige at 8:35 AM on January 15, 2022

I have many complex health issues, including chronic pain, so I feel ya. Some things that have helped me

- Mindfulness meditation twice daily (here's a playlist of easy 10-minute meditations on YouTube)
- Antidipressants
- Talk therapy
- Pain psychology program (I went to one through University of California, San Francisco, but you can probably find one near you)
- Making sure to get out of the house and get fresh air every day
posted by radioamy at 1:40 PM on January 16, 2022 [1 favorite]

Best answer: ygmiaa, I'm sorry for what you're having to go through. I'm largely in a similar boat, in that I fell down some steps in my first year of college, and have had lingering complications from the back surgeries (plural) that resulted. This past year has seen a progression in those issues. Since my initial injury, I haven't really ever been able to do much in the way of exercise, and most sports have been off limits to me. Now, I'm finding out that the one form of exercise, walking, that I was able to do is pretty much out, too.

I am, and have been for the last six months, gutted about this. Walking was not only my only way to exercise, I had really come to enjoy exploring the world around me. My wife and I had really gotten into taking walks together, and those walks and the things we saw became shared experiences that made us closer.

Now, I am beginning to understand that the treatment I have been receiving is unlikely to really make any real improvement. I'm in my mid-forties, and the last six months, the ongoing refrain in my head is that I'm too young for this to be happening to me, to essentially have to surrender my mobility. I'm having a lot of issues with self worth, and yes, intense bouts of depression. I look at the hand full of pills I take several times a day to manage the pain that is always with me, and think, that's it, I'm old/decrepit/unwell now, and I'm struggling with it.

I'm not sure how well I'm going to deal with this. I recognize that there are choices that I need to make. One of those choices, the easiest one, is to just give in, give up. To wallow. To accept all of the bullshit my head is telling me, that I am old, that this is just how things are going to be, and I should accept it and give in. I know, though, if I do that, I will be miserable. I will be miserable for others to be around. I will hate my body, my life, and myself, and, in the long run, it'll be the misery and my acceptance of it that kills me.

I'm not there yet. I'm in the early going of this new, unpleasant development, and I'm trying, now, to find out how I can live like this. I cannot do many things that I want to do, and now, there are many things I could do that I cannot anymore. My goal now is to find out what I can do, and of those things, what I can do that I will enjoy, that will give me the enjoyment I used to derive from other things because if I don't do that, if I don't make the effort to find those things, I will be that miserable person.

I don't know if I can get there. I know there will be days where I do wallow, where the pain is too much to think of anything not connected to it, but I know that, no, I choose to believe that not every day will be like that, and I must, absolutely must find things with which to fill those days so that I have things, new things, old things, just things that I enjoy, can do, and can give me what I need to keep going.

If there is any way forward for treatment for your condition, by all means pursue it, and I wish you a way through this. It sucks, and I'm sorry that this is what you have, and have to deal with. As others have said, therapy can help, but I've been told that myself, and I know how hard it is to get to that point.

The half-assed metaphor that I've kicked around in my mind for years is that it's almost like rock-climbing. Seeking out the handhold that will help you to move forward, when possible, and at other times, the hold that allows you to rest where you are. It can be exhausting, and yes, sometimes we don't have it in us to search for the next hold. When we do, though, it's about finding that thing to hold onto, that thing that can take our weight, that can support us, and give us a path to another thing, and another way forward. It's hard, at first, to find them, but there are handholds everywhere, it's just a matter of learning to see things in that way, to see a thing that you've always known was there as a thing that you can use to hold you up.

I wish I had better, more solid, more step-by-step advice to give you. If nothing else, please understand that you are not alone in this, and that there are people here who care, and who hope for the best for you. Like others have said, if it would help at all, my memail is open, and if you need to, please feel free.
posted by Ghidorah at 6:31 PM on January 16, 2022 [2 favorites]

Oh another thing. Listen to the Ologies podcast episode about Dolorology. It’s with a really interesting pain psychologist. Very accessible conversation and tons of good info.
posted by radioamy at 6:38 PM on January 16, 2022 [1 favorite]

I sure feel this. My mobility is diminishing rapidly, my hands can't do most things, the meds I need to take to keep that from getting even WORSE leave me with brain fog and feeling stupid. I can't do ANY of the things I expected to do with my life, and am pretty isolated since being fairly boring makes it harder to maintain relationships.

What I've been doing lately is leaning hard into hedonism. While anhedonia makes it hard to feel much pleasure, and my body won't allow some of the things I used to enjoy, I can opt to spend all day watching TV and eating popcorn; soaking in warm baths; seeing a massage therapist; gorging on chocolate; getting high and masturbating; etc. It's not much, but it's something, and it makes my days a little better, and over time it makes things overall a little better.

Feel free to message me if you'd like some company or commiseration.
posted by metasarah at 9:40 AM on January 19, 2022 [2 favorites]