woman looking out her window on a cloudy day

I Have Chronic Pain, and I Struggle Every Day With Suicidal Thoughts


Shhh…I’m about to tell you a secret, one so deep I suspect it is shared by many in the chronic pain community, and yet I have rarely, if ever, seen it discussed openly. I am speaking here of the thought that runs through my mind every single day, and it is this: “Damn, is it really worth it to keep on living? If I must live like this, should I really keep trying? We don’t let animals suffer this way, so why is everyone OK with me doing it?”

Why are we so unwilling to say these things? Why can’t we be honest about these kinds of thoughts? As many members of the chronic pain community may tell you, one of the greatest dangers can come when we are thought to have…primary depression.

 

That’s right, if you are in moderate to severe pain and you are questioning the value of your life, you are supposed to be…well, if not cheerful, then at least accepting, and certainly suicidal thoughts are not supposed to happen!

I’m here to tell you they do happen though. They happen every day, sometimes every hour for me. Sometimes it is just a blip – it passes through my head, is barely acknowledged and then I move on. Sometimes they are devastating and all of my strength is devoted to picking myself up and moving forward with my day, my life, in the same fashion as before.

As humans, we put a high value on hope. We are supposed to hope for a cure, hope for pain relief, hope for things to get better, and yet sometimes things are not going to get better. So what am I supposed to do? How am I supposed to not have these thoughts? How is anyone in my situation supposed to not have these thoughts?

I would venture to say that for the most part I am not depressed. I have been depressed before, I know what it is like, how it can tear life apart, how dull and gray you can get. I am still capable of laughter and joy, I still look forward to things. I still have the desire to do things. That is the rub here, folks: I do not lack the desire to be active, to work, to play, to enjoy my life. There are many things in the world that still fill me with wonder.

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In college, as a theatre major, I did a scene from the play “‘night, Mother” by Marsha Norman. As someone who has experienced depression, I can tell you I was always struck by a few lines in the play I felt perfectly encapsulated what depression was about and also why people take their own lives. The lines go something like this: “So, see, it doesn’t much matter what else happens in the world or in this house, even. I’m what was worth waiting for and I didn’t make it. Me…who might have made a difference to me…I’m not going to show up, so there’s no reason to stay, except to keep you company, and that’s…not reason enough because I’m not…very good company. Am I.”

I love lots of things – my children, my dog, my hobbies, fine art, good food, the way the sun feels on a soft spring day as the breeze kisses my skin softly. But when you have a condition like mine, you see these things taken from you slowly, one by one; or more accurately you see your ability to interact with these things taken from you. I am a passionate person, and I have so much love for the world we live in, and yet day after day, I can’t express it or experience it because the pain and fatigue just leave me in a place where the only driving need and desire is for the pain to stop.

So, this is the struggle then, and one I think many people with chronic pain deal with. My struggle is to go on and keep finding new ways, new reasons to keep living. Right now, I still feel I can do good in the world. Thanks to technology I can put these words to paper and maybe help make people more aware of what their friends and family with pain conditions go through. Let everyone know that these feelings, well, they must be somewhat normal, right?

Please don’t dismiss your loved ones who are dealing with this when they have these feelings. Remind them what they have for them still in the world, and remember if you had to deal with this, you might question the value of going on living too. And let them express themselves without judgment; perhaps the greatest burden we carry day in and day out is the burden of not being allowed to express how difficult and painful we find our lives, and how sometimes, we don’t want to go on. The good news is that most of us keep going.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via MariaDubova.

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the author's artwork

How I Manage the Stresses of Daily Life as a Person With Chronic Pain


When I’m having good pain days (like a four or five), I get involved with life. It’s still happening at home, generally, since I can take breaks and ease the ache, but there are forays into the big wide world. I try to set boundaries for the bad pain days, but I’m so high-functioning, I pass by that fine line of “too much” on a fairly regular basis. Sometimes at a drift. How will I know if I can do something unless I do it? Maybe I’m strong enough now.

the author's artwork

The days pass, the stress builds. I’m not good at knowing where that (tiny, thin, moving) line lives day to day. Certainly not good at knowing I’ve crossed it too many times. On an almost bi-monthly basis, I break down in tears and need time off to get my head back on. It’s not healthy, and it’s not sustainable.

In an effort to shift this paradigm, I’m taking a sabbatical from the phone every week. I think the constant distractions are taxing. I’m involved in one thing, but ding! Now deal with this. Then the instant messenger: beep! Totally unrelated thing over there! Focus there now! No, here! Wait, what was I doing?

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It’s impossible to focus when your days become a series of responses and reactions to dings, beeps and message alerts. There’s no time allowed for concentrated effort. I can’t remember anything, because I’m trying to remember everything. It’s like we’ve all acquiesced to being perpetual mothers of toddlers. Mom, mommy, mom, mama, mommy!

I’m going to start my days writing or doing collage instead of checking social media and email. Maybe if I start slow and easy, I can handle the stressors of the day a bit better. Creating helps me feel like I’m accomplishing something.

the author's artwork

I’ll keep personal messages to after work hours. Reduce the volume of interactions during the work day.

I’ll start meditating again. I know that works; I’ve been a steady meditator before, and it definitely kept me calmer.

I’m going to make an effort to go outside more. Get more exercise.

This lesson is about making little changes in my day to day, to avoid the breakdown altogether. Setting aside time to do the things I love, to live a life I enjoy instead of endure. It’s an unfortunate but weird little gift, that those of us dealing with pain have to constantly reassess, reimagine and rework our lives. Pain is a teacher, that’s for sure.

the author's artwork

(The images are from a series of curated collage Happy Boxes I make for friends going through difficult times. They saw me through three surgeries, it’s the least I can do.)

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A nurse sitting on hospital floor.

After 13 Years in the Medical Field, I Now Understand Chronic Pain


I have been a nurse for 13 years. I love being a nurse and always try to keep up to date on the latest care practices. I am constantly attending education sessions and reading new material in hopes to provide the best care for my patients. I really hope they feel I have provided them with compassionate and empathetic care. I always love learning new skills and have enjoyed teaching these skills to new staff.

Unfortunately, I am currently learning something new. I am learning something you cannot learn in a classroom or read in a textbook. I am learning something I thought I understood and that I thought I knew how to care for. I am now learning that you can never truly understand chronic pain until you have lived it.

There are many facets of chronic pain and many varying degrees of the pain. No two persons with the same disease may struggle the same way. The thing about chronic pain is that it isn’t always visible. What I mean by this is, on the outside a person may look pretty good – but on the inside they are likely in true agony. I think this difficulty to see the pain is why it is hard for people to understand, my previous “healthy” self included. The last couple years have really opened my eyes and I now have a completely different understanding of chronic pain.

I now understand what it is like to be standing around your family, friends and co-workers and want to scream because your body hurts so much. I understand what it is like listening to someone talk about their sore ear when your hips, knees, shoulders and wrists feel like they were hit with a baseball bat. I understand what it is like to be utterly exhausted and sleep 10 hours every day. I understand what it feels like to want just one ”good day.”

I understand what it’s like to be crying on your floor and begging the pain to stop, your pain rating well above any stupid one to 10 chart. I understand that pain finally stopping and you get up shower and go to work like nothing ever happened. I understand what it’s like to look at a flight of stairs (even though you are athletic/were athletic) and be concerned that your knees and hips might give out on the way down, or be in excruciating pain on the way up. I understand trying to put your shirt on without crying from the pain in your shoulders. I understand the insomnia that comes from the inability to sleep because lucky you, your pain gets worse at night. I understand lying to your family members about just how horrible you feel because it breaks your heart to tell them. I understand seeing in the eyes of others, that they don’t believe you.

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I now understand why a person would take narcotics regularly for pain for just one minute of relief. I can now see how a person becomes depressed because they feel like nobody believes them or will help them. I understand why a person requires so much time off they can barely work a full week or even work at all. I understand how people become isolated from others. I understand how it feels to function with pain other people can’t imagine. I understand what it’s like to have people constantly offering you “ magic” suggestions their cousin used to get better. I understand how concerned you begin to feel when you list the things wrong with you.

But most of all – and this I wish I didn’t know, I understand how chronic pain can take a strong person and slowly break them down into someone they never dreamt they would become.

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Thinkstock Image By: Wavebreakmedia Ltd

woman illuminated by sunlight in the street

5 Life Lessons That Have Helped Me Through Chronic Pain


When I first experienced this one big piece of a puzzle and challenge in my life, I must admit I cried buckets of tears as I tried to understand what I was going through. It was all unexpected. I had to give up work (and “life”) for quite some time just to figure out the whys on this part of my life — why I feel restless, why am I aching, why do I suddenly get sprains or cramps randomly… I could go on for minutes telling you all the whys, but this is not about that. Recalling it, there is still a sting in my heart that will never be gone, for I lived my life during those years with such exuberance, living a life like how I think a normal 28-year-old would — waking up feeling rested, ready to face the day and up for some life adventures. It was fun, until that day when it felt like I was robbed of it.

 

Looking back five years later, I have realized that though it may have created a sting in my heart that still lingers and questions that are left unanswered, there are actually a lot more things pain has taught me, which I wanted to share to help people struggling with chronic pain – or any kind of pain there is – to realize the same thing I did. Hopefully the following can help you through the journey of living with chronic pain.

1. Equanimity

Although this word/concept has been present since early days and has been practiced by all sorts of beliefs/religions, I must admit I only came across this word after I got this condition. I read it in Toni Bernhard’s book, “How to be Sick,” and basically, it teaches the essence of equanimity as “accepting life as it comes to us without blaming anything or anyone — including ourselves.”

During those times when I first felt pain, I had been overthinking why that was happening to me, or what I had possibly done wrong during those days when I was still pretty much “normal.” I was hard on myself then, for I was having difficulty understanding all the whys of it. I must admit that having a career as a designer, I work late a lot (all design agency people will understand this part), and working late can also mean sleepless nights in the office, but then, I bet I am not the only one living this kind of life. Some might even have vices on top of the “designer culture/lifestyle” which I do not have. I even try not to be sedentary by being active in my own little ways.

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But still, why me? That would be myself talking back in the days when the word equanimity was not in my vocabulary yet. So I greatly suggest learning and applying this philosophy in life. This will not just help people like us struggling to understand the rock that hit us, but for the people around us as well.

“Without the bitterest cold that penetrates to the very bone, how can plum blossoms send forth their fragrance all over the universe?”

“If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.”

A very good read, highly suggested.

2. Patience

Being in pain every single day of my life also taught me to be more patient.

– Patience with those people who do not understand what chronic pain is like and what a person with chronic pain is going through

– Patience with those who say, “But you don’t look sick.”

– Patience with those people who try to “care” and “diagnose” my condition and actually “prescribe” what I should be eating, drinking or doing

– Patience with those people who do not exactly know what it feels like to be in chronic pain every single day and yet judge you — judge you for the things and situations that are only visible to them, because I opt to keep my life private.

– Patience in finding that right person who I think will stand by me when I am at my most difficult time; someone whom, even if I’m in my ugliest state, will still accept me; someone who will accept this excess baggage I carry and would even somehow help to carry it for me; someone genuine; someone who would accept that this is part of my reality; someone who would listen to whatever it is I feel without getting tired of it and would never judge me, because even if he does not feel my pain, he would care enough and love me enough to just be there for me.

– Patience in understanding that even if I am surrounded by people who completely understand what I am going through, they also may get tired of taking care of me and should be given enough space as well.

– Patience for times that my body would randomly hurt itself in the period where I most want it to “cooperate.”

– Patience with constantly taking lab tests, check-ups and scans and still not getting an answer/answers about what my condition is in the end.

A virtue I think every chronic patient must learn.

3. Acceptance

This has been the hardest part of it all. This is where I have struggled a lot – accepting this is the challenge I have to put up with – because the initial thought of having this condition for as long as I exist hurts. That almost everything is degenerative and irreversible and I have all this for no apparent reason. I could not get any explanation that is convincing enough to accept. I became indignant over the situation.

But I eventually got tired of all the exasperation it was giving me and tried to get my grip by searching for communities online, people who share the same symptoms as me, reading books I knew would help me and even listening to music that would calm me and was somehow relatable to what I was feeling. It was when I accepted everything that I felt kind of liberated from the condition.

It is not easy, but it’s all worth it in the end. Give it a try.

4. Bravery

One of the things I am grateful for in experiencing all this is gaining the strength to face all of life’s challenges. It taught me that life is definitely full of surprises in many forms and all we have to do is face it and not run away from it. It has taught me to see things from a different perspective and that warriors and champions come in other forms too.

We are all warriors and champions for braving this challenge we have in life.

5. Happiness

People often think that happiness only occurs during the positive moments or milestones in life. It does not and I will attest to that. It’s often when something negative has impacted one’s life that we actually appreciate happiness more. As Lykke Li would put it, “Sadness is a blessing.” We get to see the real reason beyond that happiness.

We find depth in life and we tend to appreciate more of everything — even the littlest of it.

***

Just a few months ago, I cried a bucketful of tears again, for I was told I have osteoarthritis (or it could possibly even be rheumatoid arthritis – I am still to be monitored). I can still recall that look on the doctor’s face when I was told that if it is indeed osteoarthritis, though we can control its progress, it is degenerative – meaning it will still happen. It’s irreversible and the only thing I can do about it is manage it (to top off the rest of the conditions I need to manage).

It was a straight punch in my face, a stab right into my heart. A kind of pain that surmounts even the most painful heartbreak I’ve had. Not because I’m still considered young to have it, but because as an artist/designer, hands are the most important tool of the trade and slowly not being able to use them, especially when they are swelling and aching like hell, is more painful for me than the actual pain itself.

Nonetheless, applying these five things I have learned throughout my journey has helped me (and is still helping me) to be stronger than I used to be. It has taught me to handle the situation better. Yes, I still find myself crying, especially when it is the hands that are hurting, but unlike how I used to before, I will just think and reflect on these five things and it will suddenly ease the emotional pain that the physical pain brings, leaving me with just the physical and mental pain to manage.

I hope these lessons will also guide those people struggling with whatever pain. That like me, they may find this helpful in understanding or at least managing the pain they are experiencing. It is also my way of reaching out and telling my fellow pain friends that they are never alone in the battle – or if they feel they are, to just think of these pointers to help ease the pain. And to those who are continuously inspiring and being an instrument through writing, songs and art, kudos to all of you and thank you for helping people like me to find a speck of light amidst the darkness.

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A woman with her eyes shut, while crying.

How to Hold Onto Hope When You Have Chronic Pain


I know the feeling – pain is so pervasive you can’t imagine life without it any more. I’ve lived with debilitating nerve pain from thoracic outlet syndrome since the fall of 2007.

It’s part of what has made living with pain so incredibly challenging. It’s such an immediate, and invasive experience that there isn’t room for anything else. It demands our full attention, and it takes most of our energy – not just the healing process, but being in pain.

Life without pain seemed to recede irretrievably into the distant past. I almost couldn’t remember what it felt like to move freely, to not be in pain.

That’s one of the things that made me feel like giving up. Life without pain lived in some remote, untouchable place in the distant past. It seemed inaccessible, something long ago and far away. And because I couldn’t access that, couldn’t even imagine life without pain any more, the pain felt permanent.

These feelings of “I’ll never be out of this,” “there’s no end to pain,” “this will never stop” took me to hopelessness and depression. It’s really hard to come back from that if there isn’t a lot in your daily life to lift you back out.

You might say to me, “You don’t know how hard it is for me.” And you’re right. I don’t know your pain. No one does except you. But I can tell you that I know about being in relentless debilitating pain every hour of every day for most of the past 10 years. I know about waking up in the morning and having to pull on all my inner strength and resources just to get through another day.

I know about wanting to give up.

I might have, but I had someone who needed me to be there.

I think that’s one of the secrets of carrying on. Finding someone or something that calls you back into life – that you can use to call yourself back into life. Something or someone you care about being here for.

It might be a child. It might be a spouse. It might be a friend, or it might be a cause. Maybe you have something the world needs to hear because of your time in pain. Maybe you want to advocate for people with chronic pain. Maybe the pain has taught you something that you can put into writing or art or poetry or song. Something.

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You may have to work at it, and you may have to search to find something to care about – but find a line to throw back out into life, to hook into something that’s important to you, and pull on it.

Pull on it like your life depends on it.

Am I going to tell you that if you do this, you’ll find your way to the other side of pain? No. I can’t promise that. But I also can’t say it won’t happen either. And neither can anyone else.

It’s difficult to find a way to believe in life after pain if your doctor tells you there is little hope for it. It’s hard to keep going when there seems to be no medical reason to expect something better.

I know. I was given a life sentence too.

But I have moved into a much better place since then. I had to learn to stop letting my current situation completely determine my future. I had to stop looking only into the past to find any evidence of being pain-free because that was reiterating the message that that part of my life, the pain-free part, was over. That it would never come again.

Yes, that part of life is past. But the future is not yet created. The future is wide open. It’s possible that things could get worse, but there’s also the possibility that things can get better. The place of no pain is hard to imagine when we’re in pain, captive to it, but that does not mean that the place of less pain or less pain can’t ever exist.

I am living proof.

Did I go from barely being able to walk down the street to competing in cross country ski races? No. But I have gone from barely being able to walk down the street to regular painful walks to regular more enjoyable and less painful walks to a couple of movements of Tai Chi to doing Tai Chi daily. For me, that’s miraculous.

But I couldn’t have gotten there if I’d let my then-present experience with pain convince me that it would always be that way. I had to use tenacity, fortitude, and courage to keep going when it didn’t seem to be getting any better. I had to tell myself that I didn’t know the future, and neither did my doctors.

Nothing, nothing, nothing in our current experience proves that the future does not hold a life with less pain or no pain. Nothing. No one can tell you that, or take that hope away.

My future is between me and my Creator, and no one else.

And so is yours, my friend.

Be as angry as you need to be about what you’re living through, but don’t give up.

Don’t give up.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “HOME” to 741-741. Head here for a list of crisis centers around the world.

Follow this journey on The Pain Companion.

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Thinkstock Image By: happyframe

The author lying in bed next to author's dog

When I Find Myself Trying to Be the 'Positive Person With Chronic Pain’


I’m well-known as a person who never stops moving. I’m a full-time student, I work multiple jobs, I have active hobbies including rock climbing and dancing. To everyone who knows me through my actions, I’m a person who enjoys constantly doing something.

My social media profiles reflect this. I show myself being an active person, I share my accomplishments. I very rarely bring up the not-so-glamorous parts of my life. I try hard to present myself as a person who has everything together. After going through half of my life with people worrying about me and my mental health, I don’t want anyone to even vaguely perceive me as struggling.

However, the truth of the matter is, any chance I have, I’m on my heating pad in my bed with my TENS unit hooked up to my back and Icy Hot on each one of my limbs.

 

While most of my friends are aware that I live with chronic pain conditions, very few are aware as to the extent these conditions affect my life. I’m afraid if I share those effects with the people close to me, they won’t want to be around me anymore.

Shame is the driving force in my fear. I have worked through the shame I feel talking about my eating disorder and addiction, and I’m logically able to understand there’s nothing to be ashamed of regarding my pain as well. Logical and emotional thinking are different, though. I emotionally feel as though there should be some way I can force myself to “push through” and deal with the constant pain to be the person my friends think I am.

The author lying in bed next to author's dog

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The reality of the situation is that I still find myself trying to be the “positive person with chronic pain,” and that’s not an authentic version of myself. There are days when I can’t get out of bed because getting down the stairs is too much for my body. There are days when all of my energy goes towards taking care of my body in the best ways I know how, and I don’t have the energy to be with my friends or be an active person.

Fighting shame feels the same as fighting stigma in that I have to own it. I need to recognize my limits and tell them to others so they can understand what I’m trying to cope with on a daily basis.

There’s not a single person on this planet who constantly has good days. My not-so-good days just happen to look a little different, because I’m listening to what my body is telling me. Even my good days look a little different because I’m still trying to listen to my body and give it what it needs to feel OK enough to be active.

There’s nothing shameful about learning how to take care of yourself and listening to the cues telling you what you need. I can’t perfectly curate my life because that isn’t how life works. I accept myself for who I am, chronic pain conditions and all. It’s time for me to let others understand who I am in an authentic manner, and that starts with breaking down shame and allowing myself to be vulnerable, even if that isn’t always picture-perfect.

If you or someone you know is struggling with an eating disorder, you can call the National Eating Disorders Association Helpline at 1-800-931-2237.

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