Suicide is Not About You

Warning: This is a candid piece about a difficult subject.  Please understand I am not advocating suicide nor is this a cry for help.  I’m encouraging understanding and compassion.

The chronically ill suffer from severe depression, grief, loss, and a high suicide rate, but these symptoms are rarely openly discussed.  Today, however, I will brave speaking candidly about the topic that is so much easier to ignore.  We all know it is there, but neither the chronically ill, nor the healthy want to acknowledge the elephant in the room hogging the sofa and the remote.  Why?  Simple, the hard truths everyone would have to acknowledge are more terrifying than an IRS audit on infinite loop.  Even at this moment many would rather suffer through its poor taste in TV shows than read on and acknowledge this particular elephant.


Well, I’ve never really been one to go with the flow.  We need to drag the subject out into the sun, take a good hard look and have an honest discussion.   The hiding and dodging may be more comfortable for some, but it is doing damage of its own.  By ignoring it you not only make it  bigger and scarier, but it also makes the one suffering feel even more isolated.  It is better to be direct and honest.  It is a brave soul that opens a door to a very private part of life and lets other people in.  So, take a good deep breath, steady your heart and quiet your mind.  I am not only going to venture into this taboo subject, I am going to share my personal experience.

I sympathize completely.

I sympathize completely.

The mental deterioration due to my illness is a part of me, my experience, and thought process that I rarely speak of because it makes the people around me terribly uncomfortable.  Right there, my usual silence is a demonstration of how society makes surviving this side of chronic illness one of the hardest obstacles to overcome.  In the medical community it is so well known that chronic pain and illness have such a high rate of depression and suicide that many doctors will make sure their patients have a counselor and was on antidepressants.  Doctors are well aware, but society doesn’t fully realize the impact chronic pain and illness has on the mental state of the sufferer.

Today the two paths become one.

Today the two paths become one.

When my body first began its rapid slide to the current disaster I approached it like everyone else; go to the doctor, find the problem, and fix it.  Obviously, right?  Well, as the months started to turn into years and the pain and misery weren’t abating, in fact, they were increasing, my thought process began to diverge from those who surrounded me.  I did go to the doctor, many doctors actually, many times, but that is where my original plan failed.  The pain was from nerve damage, but that was where the understanding of my situation stopped.  My body kept adding more and more disparate symptoms and the doctors seemed to get less and less understanding of my situation.  As the confusion regarding my illness increased so did my pain and with each failed attempt at managing the pain or finding a diagnosis, my hopelessness soared.

pain - real pain scale

At first I felt adrift, disconnected from everyone and everything.  The days blurred and what was once important no longer seemed real.  I knew I was a part of the world, but it felt more like I was watching it from afar.  The life I had seemed so long ago and so far away.  I would never live that life of adventure and accomplishment again and I grieved that loss terribly every second of every day. My days now consisted of lying in bed using ice, heat, medication, stretches, the fetal position, anything and everything I could think of to lessen the pain.  I would have turned cartwheels in a clown suit if I thought it would help.  Being pain free was unimaginable in my current state, I just wanted it to decrease enough so I could take a breath.  All I wanted was a little relief, just a tiny bit, just an hour, or even a minute, whatever life could find it in its heart to grant me.  The only real relief I knew was sleep and the first thing that goes with chronic pain is (drum roll) sleep.  Even when I was granted short stints of sweet sleep I was told by others that I moaned and even cried in my sleep.  My conscious mind got some relief, but my body’s pain continued.

There was no escaping the pain.

There was no escaping the pain.

After months of this, day in and day out with no possibilities of relief my heart and mind came together on one thing: what I was not living, I was just surviving.  If I was staring down day after day, year after year of so much agonizing pain that I had no room for any quality of life I knew that this fight was a losing one and there was another option.

Suicide is usually associated with anger.  Most of the time someone reaches a very dark place in their lives and kills themselves with some variation on the thought of, “they’ll be sorry,” or “I’ll show them.”  It is often a permanent solution to a temporary problem.  However, in some cases, there is no anger involved.  I believed that my situation was permanent and realistically there wasn’t any reason to believe otherwise.  I was in so much pain physically and mentally that I couldn’t survive a life time of this level of suffering.  As far as I was concerned death would be a relief, it would be an end to this awful pain.    I was only in my twenties and my body had forced me to face my own mortality, and you know what?  I was okay with it.  I was ready to go.  I wasn’t angry.  I wasn’t kicking and screaming and gnashing my teeth.  As far as I was concerned it was my path to peace.  The only problem was my loved ones.

holding on is harder

I spent several months having subtle and not so subtle conversations with those I loved. I was trying to help them realize what a kindness it would be to let me go.  That if they could find it in their hearts to understand the agony I suffered by living then they would want me to find relief.  By the time I reached this point the only reason I was still alive was for the people I loved.  I needed to know that they would be alright without me.  At the same time I resented them for forcing me to continue to suffer.  Some people understood and told me as much, to this day I am grateful for their selflessness.  I know what that cost them to say and what they were prepared to endure for me.  The people who refused to release me, on some level, though I understand their point, I resented it. They really had no clue how much pain I was suffering and in turn what they were asking of me.  In this instance, to me, encouraging me to live felt like cruel and unusual punishment. Being alive and living are two different things.

Physical pain is lonely, the depression was excruciating.

Chronic physical pain is lonely and painful in more ways than one.

Some states allow euthanasia for those with terminal illness.  I have seen pictures and read stories of people attending their own wakes and the next day dying peacefully and comfortably in a bed surrounded by loved ones.  I believe people should have the right to choose whether they live or die.  Even before my body turned on me I believed that people with terminal illnesses should have a choice.  Suicide for people like that is not anger; it is because their suffering is too great.  Regardless of how the pain presents, you just don’t know what someone else is experiencing.  What everyone needs is an honest discussion based in understanding and compassion.

There are worse things than death.

There are worse things than death.

Still from personal experience of grief I knew it was those left behind that really carried the burden.  No matter how I suffered I knew if I died there were some people I would take with me.  So I lived on in anger and resentment. That is, when I wasn’t too busy trying not to scream from the pain.  My mental state just continued to deteriorate, many of my relationships suffered, and still I kept on keeping on.  Living for others is no life at all.  I have never been so angry in my life.  Which didn’t help the situation at all. If you look at it honestly we were all being selfish.  I wanted my pain to end and they didn’t want theirs to begin.  I get it, I do, but I don’t think that understanding goes both ways.  I doubt many people understood my side. Many felt they knew what was best for me and living was it regardless of what that life looked like.  I, on the other hand, had a drastically different opinion on the matter.  I believed and still do, that it is not the quantity of life that matters, it’s the quality.

That experience will forever make me mindful of what I ask of others.  It has allowed me a lot kindness when it comes to understanding other people’s choices.  It gave me a depth and breadth of understanding and compassion for which I am grateful, but I still think the price of admission was too high.

Unintended consequences still have a cost.

Unintended consequences still have a cost.

I was lucky, not too many months later I found a new doctor that offered me the peripherally implanted spinal stimulator, a treatment that I have no doubt saved my life.  Even for those I loved I could not have survived long in that much pain.  While the stimulator didn’t take away all my pain it was that modicum of relief that I needed to begin to function again.  I am nowhere near my old life, but I have found small ways to pull enough pieces together so I can feel human again.  It isn’t perfect, far from it, but I’m still finding new ways each day that make it worthwhile to wake up the next.  That doesn’t mean I don’t still have bad days, or I don’t still struggle, I do, but right now I know how to hang on and find the next good thing that makes life worth living.

Hanging on, even if it's by a thread, still keeps you in the game.

Hanging on, even if it’s by a thread, still keeps you in the game.

Depression and suicide are as much a part of chronic illness as all the other symptoms.  The problem is that as a society we ignore and avoid it.  Unfortunately this leaves the chronically ill alone to cope with some pretty strong demons.  I believe if someone had sat me down for a non-judgmental discussion it would have lightened that load.  This may seem like a terrifying discussion, but talking about it doesn’t give them any ideas.  These thoughts have been bouncing around in their brains relentlessly for ages.  Instead you now have the opportunity to offer some different perspectives or get them help if they don’t already have it.  Just remember to lead with compassion and understanding; these thoughts aren’t because of you.  Chances are, like me, they are holding on for you and offering your ear and shoulder will have profound meaning to them.



About leitis23

I'm an adventure, living life to the fullest, and doing stupid things enthusiast, whose life took a serious left turn into chronic invisible illness. My saga of adventures in the world and in medicine never fail to keep life interesting.
This entry was posted in chronic fatigue syndrome, Chronic Illness, Chronic Pain, compassion, conditions and diseases, coping, depression, family, friends, friendship, health, helping, invisible illness, lupus, Medicine, mystery diagnosis, Mystery Illness, pain management, practicing medicine, suicide and tagged , , , , , , , , , , , . Bookmark the permalink.

56 Responses to Suicide is Not About You

  1. Billie says:

    I hate it that I can’t find the words to express what I feel when I read your works. All I can say here is “Wow”, but I’ve said that before when I’ve commented and it is beyond inadequate. I think your writing is why you were put on this earth in the first place. You are giving encouragement and understanding to so many people, especially now that you’re work has gone viral. Kristy, you are so loved, and we are two of your biggest fans. We are proud to have known you for the past 35 years, and we await with great anticipation, what you have to say next.

    • leitis23 says:

      I appreciate your support and your enthusiasm for reading my writing and learning about my life. Thank you so much for all the encouragement and kindness.

  2. KP says:

    I am thrilled to have found your blog. I am also a 20 something living with chronic neuropathic pain, and I have been since I was 17. I think everyone with chronic pain has been through what you described here, and you are absolutely right, when you come face to face with the understanding that you can end the pain by ending your life you become entirely empathetic to others who have done just that. We need to be able to talk about these things without fear of judgement, and I think that people need to recognize that only 75% are due to clinical depression. So thank you for openly and honestly discussing a topic that I have never felt I had the permission to talk about with out people saying “don’t talk like that.”

  3. leitis23 says:

    Exactly, if they don’t openly say something you will get the look that is either a deer in the headlights or total discomfort. To be honest this was a hard one to write and a scary one to publish. Thank you for understanding and speaking up. I do believe if this were discussed more we wouldn’t feel so alone and lost.

    • Jennie Choi says:

      Thank you so much for writing this peice. I am also suffering from crazy symptoms from a very simple nasal surgery. Now I can barely sleep at night so i have to function during the day like a zombie, and sleep is a living nightmare. i stay in bed unable to sleep, although I AM VERY much ready to sleep but the pain in my nose doesn’t allow me. I just dont know how much longer i can take…so thank you finally someone understands. I am not depressed i love life and want to live. But I cant live like this forever, i have only had several hours of sleep for the last 2 months…

  4. gaterry says:

    I first found your blog quite by accident or was it. I have been disabled since 1990 because of DDD. I have suffered since 1990. I have no discs in my neck, and the disease marches onward or to be exact, downward. Thank you so much for sharing all you go through, at least I know that I am not alone or crazy. I copied your “6 things about chronic pain” (I hope that is OK) because when I read it I felt like you had been in my body and was saying what I could express so clearly. I took a copy to my pain management appt today and handed it to my doctor and said “here, this is EXACTLY how I feel 24/7.!! I told him that they weren’t my words, but they describe my battle everyday! At times, of course I’m sure you know, they want to monitor you on the pain meds, like I’m a drug addict, however, you usually get sent to pain management when doctors realize there is nothing more they can do to help. I did not ask to be sent to pain management, I asked them to fix whatever was broke so that I didn’t need meds, and I could get on with my life. I was dreaming big, but all I got was a nightmare of pain and depression. There is no happy ending for me, as I too have the stimulator implant, and it worked well for about a year, but now causes me pain at the injection site and does nothing for the nerve pain. However, finding your blog was one of the best things in my life,,I have made everyone I know read it because it is how I feel. On a final note, I asked my daughter to read it last night because she is always commenting on how grumpy I am, how”those” pain meds are not good for me. Well, because I had to expend the energy and suffer the pain to go see the doctor today, I was REALLY grumpy when she called today, she asked why I was so grumpy……. I knew right then she had not read your blog so I told her to go read it WHILE I stayed on the phone…she came back a few minutes later, and very meekly said I’m sorry mom, go home and try to rest. FINALLY she gets it thanks to your words, I am forever grateful for your blog, and will follow it, and comment if I can help someone else in any way!! ❤

    • leitis23 says:

      Wow, Gaterry, I am truly touched by what you have said here. I started writing in part to sort my own mind and to help my friends and family understand me (I have a hard time explaining these things in person, but writing is a good outlet for me) and finally to connect with and hopefully help people like me. A nice bonus is the realization for all of us how very many other people are in the same boat. I’m pretty blown away myself. I love that you shared my writing, please feel free to pass the word on in whatever form you want. That I connected you and your daughter like that makes me so happy. This is more than I hoped for. So please share and join in the conversation, I love hearing other people’s stories and thoughts. Hugs. Can I ask how you found my blog?

      • gaterry says:

        Leitis, I really wish I knew..I was on FB and clicked on something, guess I missed my goal, and your blog popped up. I have to tell you, that was the best missed click. I’m assuming someone had posted it on the news feed. I have gained validation, and comfort just KNOWING I’m not alone! Not that I’m happy that someone else lives with pain! Even my husband understands me better from your words. When I got up this morning (really 11:30a) , hubby had cleaned the house top to bottom. I am very thankful for your words, no way I could have said it so well,,plus it helped that they weren’t my words, because it proved to all who didn’t believe my pain, that I am not the only one like me….there are many people like us! I will be praying for all of us.

  5. Reblogged this on LifeWithFibromyalgia and commented:

    These are very important issues we need to discuss. The thoughts we sit with in the dark need to have light shed on them. Otherwise, they are more likely to overtake us. If you’re having thoughts of suicide, PLEASE PLEASE get some professional help. If someone comes to you with suicidal thoughts, PLEASE PLEASE PLEASE show nothing but care & compassion.

  6. 56doronl says:

    Reblogged this on Chronic Pains Blog and commented:

    Interesting post that I think more people should read and understand what is going in the mind of someone with chronic pains

  7. 56doronl says:

    It is touching and familiar subject, I feel more people should read and try to understand I reblogged it on my . We all feeling sometime or sometime more that we had enough and can’t face another day but the next day some time give us some hope. To live everyday with such a feeling it can easily drag you the wrong way. We must seek help and try to find a way to cope even when the half glass is empty. I always try to see the half full and at times it is very hard. There are many resources and people out here that can help. I am not a professional guy but a suferer so I can only give an opinion. It is a lot of mind play even I know that at times I feel it is a one way road. I just read this post via a friend that sufer also and I feel that the more we will be open and talk about it we will be able to assist each other to keep going. I know it might be words but I send you a big bear hug and hope that you can find someone that can help there are people who can. I think that suicidal thoughts are crying for help and can lead to something we don’t really want. There is light in the tunnel and I am sure someone can help but we need to be able to talk and communicate before we going that one way street with no return. Please seek help…

    • cindy says:

      I have been thinking about suicide i know how ill do it when its time. a cry for help i think NOT right of life i think y! es! 2 years been trying to get my surgery and health insurance no go but Independence for 44 years no more tierd of the pain the tears the PAIN!! something we really DONT want? really i did seek help 3 times now,,i cry daily caiuse of the pain and i refise to be treated like a junkie because i hurt and 4 tylnol 4 aleve doesnt touch it and the 3 pinched nerves the DDD the spinals and now m,y right arm lost strength and hench my typing sevear arthritis in neck and back buldging disk in neck copd and at times i am smothering to death i cant work anymore Anyhow seeking help took me 4 weeks at one hour a week for 4 weeks than assigned a councler who talked about how the budget cuts are taking his sexual offenders away!!! come on really

  8. cindy says:

    I can not even begin to descibe,,i have sat hear the last hour reading your bogs these blogs are my words!! all of them! plagiarism haha Not really laughing in my heart i know my god i am not alone 😦 …i was so done last auguist 2013 i almost just ended i read your addition vrs pain mangment also i read them all forgive my spelling my right arm shoulder is screwed but my ddd with 3 sets of pinched nerves and life i raised 4 boys myself did everything from camping to wood splitting cutting to keep my babies warm now diabiled cant work or take care of myself my life is far from termoile!! Your blog has been a heaven send because im not alone

  9. Christina says:

    I appreciate your story. I live this everyday. I want God to heal me and with each day I don’t get healed I then start to want for him to take me so I don’t have to hurt anymore. But I don’t want to spend eternity in hell either by taking my life. And I can’t put my kids through that but yet they don’t understand the pain I endure everyday.

  10. I luckily have never tried to commit suicide, but the thoughts have haunted me often. My sister committed suicide about two years ago due to chronic pain (physical, mental and emotional). I do not blame her and understand why she did what she did, even though it still saddens me. I myself suffer from many chronic pain/chronic illness issues, so as hard as it was to deal with her death, I did understand it.

  11. Pingback: Right to Die | Creatively Maladjusted

  12. Tyro says:

    Reblogged this on Creatively Maladjusted and commented:

    I recently read an article which did a great job of explaining an issue which is very important to me: the right to suicide when life becomes unbearable. I live in Washington State, USA; we have a Death with Dignity law here, but it only covers people with terminal diagnoses and less than 6 months to live. People like me – people who have non-lethal diseases which make our lives hell – are not protected. We’re forced to continue living through sheer hell while doctors tell us they can’t do anything and refuse to give us drugs which would ease our suffering somewhat because they’re worried about long term side effects. Our culture focuses far too much on preserving length of life and not nearly enough on improving quality.

  13. Pingback: Suicide is Not About You – Pain Drives to Despair | EDS Info (Ehlers-Danlos Syndrome)

  14. Cr Mcdonough says:

    Thank you.

    ALthough those with severe depression do not have the same issues with the physical pain, the emotional and intellectual disruption are the same.

    We want our pain to end, yet we don’t want our loved one’s pain to begin.

    Thank you.

  15. I have gone through 15 years of pain and depression. It started after a bad
    Virus but no doctor ever asked me any details. At first my GP took some exrays did a MRI of my spine but nothing was found. I started getting this redness over my left upper shoulder blade. The doctor was a big fan of new pain meds like oxycontin. So that where the bandaid started and it’s still there. After doctors and more doctor I was still was receiving more medication probably patching up what the other medication had caused. I am still in pain but taking a handful of med. why do I take it. I don’t want my life to be longer. Why would I want a long life feeling like a joke to everyone who really knows me. I hate doing this to my children and grandchildren. My siblings are men and they think I am a whining little girls. I always was kind of ignored by all 6 brothers but I was kind if an outsider. I feel that way again. Many years went by and I had

  16. Sally Hewitt says:

    Re: Suicide is not about you

    I have ME, all the horrible symptoms, especially the pain has taken my life away from me. I’ve thought about suicide so often, the ways and how’s and as you said it wasn’t about the anger, although I am angry, hurt and depressed, who wouldn’t be living many years with an invisible illness, I feel I just want release from this. What’s stopped me has always been family. I have found myself so angry at them because if they weren’t there I could just go! Vicious circle isn’t it. I’ve been to so many doctors, specialists, private doctors, every holistic approach I can find, all the different weird and wonderful medications, non of which have worked. Life it only doable if I’m laying in bed, thinking about how it used to be, I try and make an effort for other people who don’t think I’m trying hard enough (😳❗️) and I pay a terrible price for it. This isn’t a life, it’s more exhausting than anything I could imagine. I get so angry at doctors who I know have nothing more to offer me, friends who say it could be worse and terminal illness. What can I say to that?
    I’ve never read anything like your story before and it’s so good that someone else thinks as I have and do.
    I’m so very glad you have found some relief and wish better times in the middle of it all? I hope that for me too. More googling for me perhaps? I’m laying in a dark room, can see sunlight under my blackout blinds, can hear birds and life and just want to be out there, worrying about something trivial like will the traffic be bad driving home from work….. Oh well, it’s my daughters birthday in a week or 2 and she’s getting married in 2017, so haven’t got a choice have I? I can only hope that I be upright, clean and see her!!
    I’m in my 50’s and never ever thought my life would be this way. I wasn’t ill at your age so I’m sorry that you are, I hope life will be easier for you and you can do some of the things you want!!!! Hugs!! Thank you for sharing!!!!
    Sally xx

    • leitis23 says:

      It’s aa very hard life to survive and idon’t most people understand that most of the time we don’t have the energy to be angry. As you said, what we really dream of is release. Release from the pain, the excitation, the assumptions, attempting to meet just afew of other people’s expectations, and facing all of it, day after day. Iknow exactly what I would say to someone who said it could be worse, it could be terminal, because iheard that alot in beginning…I would give anything to know this would end! It’s true. The hardest part is living like this thinking it might last forever.

      • Hamstrman says:

        Everything you said in this article resonated with me so perfectly. I don’t suffer from physical pain (although I do have severe colitis which makes leaving the house not fun), but rather mental pain. I always feel like I have no right to complain because the mental pain, we are told, is all in our heads and if we could just work to get over it, it’d be gone. And, after all, it’s not like the pain is physical, where you can see it on an X-ray or a test.

        The conclusion I’ve come to is that everyone is selfish when it comes to suicide. You, for hurting your loved ones so very much that will linger until they die. But you hit the nail on the head that your loved ones are being selfish for deciding that, no matter how great your pain, they want you to live. It’s better than being dead. For them, not you.

        I agree so much at the perpetually increasing hopelessness with every failed attempt to improve. I also have never felt any anger toward wanting to die. It feels completely rational. Like, wow, why didn’t I think of this before? Anyone would come to this conclusion… You think people will “get it”, but all they do is tell you how much hope there is. That if you can’t predict the future, then how can you say it’s hopeless? I worked in statistical analysis before I lost my job from depression and you can, with a high degree of certainty, determine specific outcomes in life.

        I rather like this quote from comedian Doug Stanhope: “Life is like a movie, if you’ve sat through more than half of it and it’s sucked every second so far, it probably isn’t gonna get great right at the end and make it all worthwhile. None should blame you for walking out early.”

        I’m so glad you found a treatment that improved your quality of life to whatever extent. I hope for that someday too. I hope I’m not insulting you by lumping my mental anguish in with your mind-numbing pain. I also commented on your more recent post:

      • leitis23 says:

        I believe mental pain is just as severe an invisible as chronic pain if not more. The depression that comes with chronic pain is just as painful as the physical pain. Please take whatever you can get from here, I have suffered deep depression and extreme anxiety and those are hard beasts to bear. I don’t know that I’ve written about them specifically because I haven’t sorted how to deal with them myself. So I’m glad you’re finding this useful and if I get the mental health side more sorted I’ll write about it more directly. In the mean time we will both have to sort it out piece by piece.

    • Jane says:

      Hi Sally
      How are you doing? X

  17. kait says:

    THANK U SO MUCH…ive been trying to open talks about this with loved ones, and NO ONE can even seem to make it past thru a few sentences….the several times we did, I ended up being taken to th emergency room and sometimes even kept against my will BC they thought I was a danger to myself….the weird thing was, I wasn’t suicidal then, I was just speculating. Its been years, the pain has gotten worse, I am 30 but have had crps for 9 years and now, multiple other ailments have piggybacked- from addiction, depression,isomnia, arthritis, degenerative disc disorder,thyroid problems, temporary paralysis, neurogenic bladder….the list never ends. I still have the option of ketamine infusions and a ketamine coma (only in Germany n Mexico, not the us)…no one I’ve ever talked to has understood how some days, all I can think about is a release from it, and the only way I know of for sure is death. People think I’m macabre-and I’ve always been a little dark humored—but I am strong and could always push forward, but now I don’t want to. I’m not suicidal. Suicide is to take ur own life, but in some situations, theres not a life to take anyway. I understand why people are scared of it— I would have never given me co sent to someone I loved—prior to knowing how bad it could get. I too, am here for everyone else, though those people get farther n farther away and I grow more apathetic and hopeless….but I push anyway, hoping one day it’ll end for me in one way or another. THANK YOU SOOOO MUCH FOR SHARING some of the most intimate thoughts a person can have with a group of strangers….know that while this may have seemed uncomfortable to u, ur article touched people, made them feel more normal, and gave some hope, validated their right to speak openly about this subject. This meant the world to me today. Bless u ❤

  18. Lauren says:

    This bought tears to my eyes, as all of it reads so true to how I feel at the moment. I’m so glad you’ve mentioned the torment of awaiting diagnosis and the despair that comes with that when in so much pain! As well as mourning an old lifestyle.

    I’m still not diagnosed it’s been going on for years and I manage to put on a ‘brave’ face on marginally better days ( I think it’s because I really treasure those days) but pain really takes you into some dark thoughts.

    I hope I get some light at the end of the tunnel. Thank you for writing a tough but beautiful article about this.

  19. B says:

    Your story is beautiful. It comforts me to see that others with chronic illness are expressing themselves publicly about suicide.

    I don’t believe anyone’s illness is “invisible.” Physical pain happens because there is something wrong and your body is crying for help. I can understand wanting to live if you know you will eventually be cured from whatever ails you, but who is comfortable living in agony? The whole point of life is to be happy. Sure there are usually ups and downs – I remember those days very well, and found joy despite everything I’d been through. But now? Now I see my body deteriorating from mold toxins I acquired from an apartment from a negligent landlord. I see a once vibrant young woman turn into a bitter, lonely, old hag. Nice hair and makeup can only mask how I really look and feel for so long. I may look fine in clothes, but no one can see the muscle I’ve lost and skin becoming wrinkled. And that’s just the aesthetics. The sinus pain, the chronic fatigue, the body aches….the chemical imbalances that cause depression and estrogen dominance (which leads to female cancers). People don’t realize just how powerful hormones are. Mold damages the endocrine system and it’s effects on your ability to function normally are highly impaired. To think I actually DO have a diagnosis, but these doctors are recommending treatments that do not work for everyone. I’ve kept my head above water with supplements, but unless I find a way to kill this elusive fungal infection, the situation can only get worse.

    I see it this way. I will keep trying until I KNOW deep inside it is time to travel to Switzerland to be euthanized. I could never do it on my own because there is always a chance I might live! Oh, the horror of those instances where people survived. Anyways, for now I still have a roof over my head, and a few dollars to try new treatments. When my parents die, I don’t have to worry about anyone missing me. With this in mind, I can be at peace knowing my pain will end and no one else’s will begin. I will honestly be shocked if I ever find a significant other or true friends. I was fine with that situation because I had ME. I love myself, and was perfectly fine with acquaintances, a vibrator, and my health and fitness. But to take away the last two…that is a part of me that’s irreplaceable.

  20. Sue says:

    You probably heard this. It’s the same thing I’ve been going thru for the last 20yrs.,I found a Dr who helped me, granted it was pills. I’d rather be addicted than live in pain. But he closed. I’ve had spinal blocks, Tens, etc…
    Now the good old government is ONLY ALLOWING doctors to perceive certain amounts, and some drugs not at all. I have always kept my medication in a safe.
    I don’t have insurance, I don’t have transportation etc.. I will not live like this anymore. Luckily I have no family /friends, how can you when you don’t know how bad your going to feel day to day.
    Thank You US Government for putting back in hell.

  21. Butter Bean says:

    I found your blog tonight at the point of planning my exit. Both the severity of the pain, and the relentless nature of it, coupled with the accompanying depression and despondency has hit an all time high. Or perhaps it’s an all time low.
    I am (was?) a positive person with a sunny outlook. I’ve become an actress worthy of an Oscar. But right now, alone in a crappy motel room, 500 miles from home, on my heating pad, I’m struggling. It’s becoming more difficult to concoct reasons and inspiration to hang around. Ive fulfilled my biggest obligations; the only thing that keeps me hanging on is weak at best. I’m not sure if it’s enough.
    I’m glad I found your blog, though this isn’t a case of misery living company. I fervently wish that healthy people could understand, but I’m pretty sure that the former healthy me couldn’t have comprehended “this.” (And I’m generally very empathetic.) I’m also a person with much faith in God. Mostly though, I’m tired of pain and weary of being a spectator. I’d rather have a life, but I’m pretty sure my existence doesn’t qualify.
    The biggest gift right now (other than relief) would be someone to hold my hand as I go. Sometimes life sucks.

  22. Herb says:

    By a thread home runm what a wonderfull. Site stumled across thank u god and thank you folks so so very much w blessings hrby

  23. Fisb says:

    Your words are amazing – they articulate the daily thought pattern and planning I have partially hidden from my wife and 4 young children since becoming a nerve pain patient 2 years ago. We have done everything we can think of and more to solve the problem, but like you my body has responded with worse pain, sometimes in other places. The burning is the worst. At first I eagerly traveled all around the country to try new treatments and consult with rockstar nerve specialist. Letting these people cut on me turned out to be one bad decision after another. Now I am permanently broken with pain that does not stop. I am not depressed , but cannot fathom living another month or 40 more years.

    You have said so clearly my thoughts , I’ll thank you in the next life. It’s such a hard decision to make and I’m not sure I have the courage. It helps to know others truly understand the hourly struggle we face.

    Thanks for letting me tell my story too.

  24. I was searching on Google for some statistics and found so much more in your blog! This is a wonderful article and very insightful!

  25. Jesse ODonnell says:

    Hello. My name is Jesse. I’m an older guy in the exact boat you are in but in worse circumstances I think. My spinal stimulator gave me some relief, but not as much as I had hoped for. Been struggling now for 7 years. Opiods, anti depressants, stimulator and a bunch of specialists telling me to learn to live with it. Used to be a Marine and an MMA fighter and now I can barely brush my teeth without hurting myself or dropping to the floor. It’s existing, not living. Could you please email me.

  26. Lisa says:

    Thank you for your article. You spoke everything I feel, and I am sure so many feel. Being diagnosed with 7 chronic dibilitatiing diseases, including chronic eczema and blistering rashes from head to toe, I have mI quality and constant pain, with no cures. I have let my husband know that I will travel out of the country to where assisted sucide is legal.

  27. Jane says:

    our gov and doctors want us to commit suicide, thats why they are denying us pain meds, we weren’t committing suicide fast enough for them, its GENOCIDE BY SUICIDE, they put a black out on reporting it or writing it on death certificates, just like they put a black out on the boys coming home dead from the war, Our gov and doctors want us dead so they can put the saved money in their pockets, were bottom feeders that need to be executed, but this way they can blame it on us, that we took our lives when they know that they force us to do it because we can no longer suffer, Ive had recurring shingles for 16 years I get shingles at least 4 times a year, the nerves have been permanently damages so the pain is 24/7 it is spreading through my body, and most of the idiot drs in WA state dont know anything about shingles, then on top of it I was in a head on collision, and by body was thrashed causing injuries they cant fix that cause pain, I also have fibro, arthritis, hashimotos, and the list goes on, I damaged a nerved in my crotch that makes it feel like i have a UTI and bladder infection all the time so with the shingles and that I cant sit, stand, walk etc without causing severe maddening pain, but the dr is taking me off all pain meds per the new cdc and state law, but this nurse prac at the everett clinic continues to give scripts to people who have shown drug seeking behavior, but if you take them as directed they take you off. This is so absurd, this is inhumane to cause people to suffer to the point they have no other choice but to commit suicide, I know they have parties over the dead bodies!!!

  28. K. Crawford says:

    I too am at this point very soon where I want to end my life from chronic horrific neuropathic facial pain that is every second of everyday of my life, caused by surgery, and like your story, worsened by seeking help from 3 neurologists, various failed nerve blocks, accupuncture, medications that worked at first then stopped working and I have no pain relief, a surgeon who will most likely reject me surgical help in one week (only surgeon I can find in Canada who repairs eyebrow nerves), and am at end of my pain tolerance.

    I have compressed nerves and pain is as follows: BURNING, STABBING, ELECTRIC SCORCHING STABBING PINS AND NEEDLES AND SLAMMING PAIN ON nosebridge and sides, under brows nearest corners of eyes and above brows, and chronic burning electric pain to upper midcheeks which is nonstop agony and I have tried all seizure meds which didnt help and failed and if I’m denied surgical help, I am ready to die rather than live this way for whatever years I have left. Fam and friends think I’m selfish as I talk of ending my life becuz they cannot FEEL THE CONSTANT PRISON I HAVE MADE FOR MYSELF.

    You know truly sad part? I am not terminal, nothing aids pain and because I can walk in a straight line, does my suffering count as any less important than one who is terminal? I have no closure to this nightmare, someone to say at least in 6 months, you’ll pass peacefully in hospice so that you don’t have to die alone and so that family does not judge you for your choice on wanting to die. I have had no quality of life for 2 yrs of misery and much as I want to live, I REFUSE TO LIVE ANYMORE LIKE THIS!!

    TELL ME, DO YOU SUPPORT MY DECISION ON THE RIGHT TO DIE AS MUCH AS SOMEONE WHO IS TERMINAL? When do I get to get to be free? When will I stop being told by drs and friends and family that I am selfish and to basically suck it up- lie in my bed of nails.

    I would gladly like to hear your thoughts as for me there is no hope and I am already dead inside anyway -lost friends, ability to work, freedom, compassion from medical community, and the will to live.

    If you reply you give a shit. If you don’t, you’re like every other person in my life- glad it’s me and not them and hence I am alone except for bf who ignores me too as he as much said we have no relationship.
    Curious for rejection again and again and again and again or a reply.

    Rgds, K.

  29. K. C. says:

    Ps…so you don’t think I am an awful person, your article was one I could have written myself…from the losing my old life, to going to drs and repeated specialists who couldn’t diagnose me and made me worse, from begging for months for meds to get pain reduction by 3% if lucky, to losing contact with friends and family as no one wants to hear from me cuz they can’t help, to everytime I had a new appt, my small hopes were shattered, to being treated like a junkie from Ers and walkin clinics as for years, only benzos helped, and from my eventual conclusion that ending my life was the only way and to now being stuck with the guilt and regret and despair and anger and rage of wanting to live as I did b4 and knowing I cannot and to how I will get friends and fam to stop making me feel guilty when I state my eventual conclusion to die on MY TERMS. I felt this article was/are my thoughts and I sobbed in relief and despair that someone far away understands. I am glad you got help and thank you for this story as I can show it to my loved ones in hopes they’ll see what I could not properly say to them. In time.
    Rgds again, K.

  30. suizou says:

    This much chronic pain in our young people in not in any way normal. I have no doubt that it’s phood and vaccines that have been forced into their lives. Follow the timeline, it’s the only real variable.

  31. Bk says:

    Wow. Tears running down my face. You and all the commenters have written my thoughts and feelings. I had a baby and 6 weeks later fell down a flight of stairs, broke my back and tailbone. My life changed forever in that instant. Chronic pain, auto immune diseases, fatigue, ridiculous insomnia, doctors, meds, procedures, alternative therapies, diet changes, weight loss, exercise, battling disiabilty, blah, blah. I used to be a nurse and cared for others who were suffering. Now I am a hermit. I’m glad to hear you got relief from a stimulator-I had one and it didn’t help. I think about death every day. Or, more accurately, escape from the pain. What I really want is to LIVE without having to experience pain and having to manage my messed up body 24/7.
    I really truly wanted to slap my unhelpful rheumatologist of 3 years when she recently said You have to learn to live with it. Bitch, please! What the f*** do you think I have been doing for 21 years?? But what I did was shut my mouth, realizing once again that Compassion is not part of our system. Why don’t they just say There is no help for you, stop bothering us. ‘Learn to live with it” should be a banned phrase. I can’t think of anything more cruel to say to someone who clearly IS doing that.
    Of course I want to be here for my children, mother, and husband, because I know my death will be hard for them. So every day I find a way, I try to find some joy to hold on to. Nothing about my life is “normal”-I am not a normal wife/mother/daughter/friend. And that’s not fair to them. The “baby” is graduating college in the spring, but going straight to grad school. I do not want my escape to be the reason she can’t finish school, have a good relationship, etc. I feel like I owe it to those I love not to devastate their lives, but how long do I owe them? I also want to be sure my “escape” doesn’t turn into another form of hell on earth and I survive the attempt. I have only ever mentioned that I don’t know how long I want to continue on to my husband and oldest daughter, who say hypothetically they would understand if it gets too bad in the distant future, but I know they won’t. It’s not their fault they can’t.
    Thank you.

  32. caitimagines says:

    I have had to go into chronic illness land too. I would really like to create a blog because I feel misunderstood by family and most people even after my paralysis and Bells Palsy from Lyme Meningitis for a week in the hospital. I would like to create a blog top! I hope it’s not difficult and costly as of course money is the bottom line of my suicidal thoughts since getting sick. How do you do it?

  33. I can’t type for more than 5-10 words as I have MS. I can still walk 10 yds or so, right leg still functioning at near full capacity but for the most part I am disabled and homebound but thankfully, not wheelchair-bound, except when I leave the house.

    Keeping this short, I am fully capable of reading and comprehending even if my ability to respond is limited. I want to thank leitis23 for this writing.. I’m trying to speed the process a person goes to from where he realizes that suicide is the best option to actually committing the suicide. What sucks is, I still want control of legacy and I hate to be viewed as a quitter. I’ll put it this way, for me, sticking around seems absolutely wrong and kind at the same time. I’m suffering, my suffering is worse every day and my disability is noticeably worse every week if not every day. I’m going to be bedridden, I’m going to have to suffer the indignity of not being able to wash or clean myself.
    With that said, let me be clear in saying these circumstances that I just described should absolutely separate myself from those of you who through counsel or therapy, love or compassion from family or friends would enjoy the rest of your lives if only you could dig out of a deep depression through a glimmer of hope. I have absolutely no hope, realistically.

    My question is this; how do I find myself in a perfect world where I will slip the gun out of the drawer, drive to the morgue and pull the trigger. I feel like I’m in a perpetual stall and I attribute his stall to this built-in need to survive and fear of death. In the back of my mind I also have this warning somewhere that if I commit suicide I automatically go to hell. I hate this dilemma or fear almost as much as I hate this disease. In the meantime, I just had my grits and I’m going to sign off. Thank God for talk to text.

    • Keith gray says:

      I am living in hell and want to die, it’s not just about chronic pain but quality of life in terms of debilitation and the emotional toll. Sometimes pain can be managed, but when uve fucked up like I did you want to just get off the ship and quit this life. I was extremely healthy looked after myself religiously, amazing job, career working on spacecraft and whole world in my hands, wealthy, university professor and chartered engineer, then got depressed cos a woman left me in the cold, ended up stupidly taking doctors antidepressants which made me suicidal, then stupidly going voluntarily to a psych ward and poisoned myself by smoking myself to death due to the stress of being treated like a criminal and threatened with electric shock treatment in there… I thought the serious illnesses i develpoed were the side effects of drugs being forced into my ass, but no, the medication they gave me interacted with some herbs Id taken and the serious health consequences and total apathy and brain disabling drugs made me suicidal and chain smoke myself literally to death with anxiety. 8 months later I now have serious neurological issues ALL undiagnosed due to noone believing me…. Nystagmus, oscillopia, double vision, colour vision problems, hearing loss, balance problems, severe tinnitus, my arms and legs feel like they have lead weights on them, memory loss, cognitive issues, hypotension….., the cultured music loving highly experienced and educated person I was is already dead replaced with just a body of my previous self existing like a tramp …everyday and every night is a living nightmare and it’s like I’m trapped in a goldfish bowl suffocating, and all because I made the stupid mistake of trying to get help for my mental health from a doctor. I can’t even veg out and watch TV because my vision and hearing is so bad, yet the ignorance of the medical community and family and friends couldn’t be worse with invisible illnesses…i look totallly normal, people ask when I’m going back to work?? when I try to get help with my vision/hearing/balance problems I am CONSTANTLY told it’s anxiety, I even got thrown back in the psych ward TWICE because I visited so many doctors who just say things are anxiety yet I insist it’s NOT!!, I’m looking at the doctor with my eyes shaking barely able to hear him, while he prescribes antidepressants that kicked me into this inescapable black hole of hell or death in the first place…it’s the emotional toll, I wake up everyday thinking what I ‘could’ have done, another day of people misunderstanding and saying stupid things like ‘go for a run you’ll feel better’ I can barely walk, or saying ‘at least you haven’t lost a leg’, I’d love to have lost a leg… I could still keep my eyes from moving randomly and hear properly. Invisible illnesses are the killer, human nature shows no compassion for things that can’t be seen, my mother says ‘you can still read, it can’t be that bad’, I cannot describe how devastating and debilitating acquired nystagmus is ‘it’s not really significant if you can make a cup of tea’ she says….people take their health for granted and can’t imagine just what some of us have to live with and why we would wish these illnesses were terminal. I loved life, was doing my dream job I’d worked for years for. The thought of killing myself is virtually incomprehensible, it defies logic, there’s not only the physical body of self preservation…. When ppl say Suicide is selfish do they actually understand the immense pain and suffering one must be in to actually visualise it, let alone the courage to execute it! I daily search for professional people who did it as role models for Suicide, to justify it or make peace with it, because I know soon I’ll have to do it, because it’s irrational to continue life so debilitated. I however, look totally normal…

  34. Laura Neighbors says:

    My Dad was terminally ill for 12 years. He took his life 6 months ago and here I am laying in bed at 12:30am looking for answers on the internet. Your article helped me understand things from a different perspective. It wasn’t about me, my Mom or my brother. I knew that, but reading your words and the way you described the pain really hit home. Thank you for sharing your experience. I’m glad you found a bit of relief and wish you well in life.

  35. John says:

    Your story is so moving due to your young age. Very very sad! Breaks my heart!

    I am middle age so I lived a life in my book and don’t feel robbed in any way. I am not angry, sad or depressed. I simply have more pain than I care to keep living with. And yes, it’s my choice.

    I have experienced what started as mild nerve pain to CONSTANT severe nerve pain. The progression has been more than a couple years. Quality of life is horrible.

    YES, sleep is the worst! Can’t function on any level however fight to provide for my children without getting too much into savings. Memory has been a huge handicap as well.

    I feel blessed for two things. #1 I have fairly substantial life insurance #2 I have found a couple companies in Switzerland that offer uthanasia which I qualify for with my otherwise “non”-terminal illness. Many legislators over here in the great USA only consider terminal people qualified. The new proposed Supreme Court justices is completely against uthinasia, otherwise seems like a great pick. (Gorsuch)

    My God are they clueless!!! Don’t they understand we wish it was terminal?

    I currently hold on for smidgen of hope with a university that recently accepted me and I have went thru 13 physicians in 2 years all of which are clueless or tell me flat out the chances of diagnoses let alone cure are remote. I am hoping to see my youngest graduate high school which is a couple years but think more and more I won’t see that. Not just for my sake but for theirs.

    Who wants to make family watch you suffer and deteriorate? Can hide it somewhat but they aren’t blind and dad certainly isn’t going to do anything with anyone such as travel, golf, fish, socialize, go out to dinner…u get the idea. I spend approx 14-16 hours a day in bed with my door locked.

    A couple docs have said I have an auto-immune disease causing a nerve disease that is breaking down the sheathing on my nerves. Started with pain in my feet, then legs, then arms and now my breathing is labored. I also have had bypass heart surgery and have stopped seeing my cardiologist for over a year as well as stopped the meds. Why would I want my heart healthy? Didn’t make sense.

    Anyway, if you also can’t take the pain anymore, a quick google search will find those companies in Switzerland. I have certainly thought of many ways to take my life and of course I have enough narcotics to kill horse as I take 24/7 for the pain as well as many other ways to end this however I choose the Switzerland companies in an attempt to avoid some of the stigma with suicide for my children and other family members. (the prices range from about 5k to 12k) over 40% of their biz is from nerve pain.

    The stigma to family seems to be the worst part of this. If not for that, I doubt I would be here today.

    Yes I know, many people would be furious with me for posting this overseas option. To them, I say, F off as you really have no clue and doubt you would make your dog suffer indefinitely yet for selfish reasons ONLY you would have a family member … and yes you could hold on for that miracle that I for one am happy this original writer did.

    To the others, I certainly hope you never need.

    Oh my previous life before the pain? well traveled, approx 15 countries, took months, even years off work just to play and enjoy family, coached my boys sports, plenty of friends that I now hide from, fairly wealthy (that is dwindling slowly), spent most of the last 23 years with my children, fortunate enough to be self employed and still receive income.

    Well enough blabbering for me … I wish you all well and certainly feel your pain…


    • leitis23 says:

      Thank you very much. I’m glad you enjoyed it. I agree that euthanasia should be available to more than just terminally ill patients. They should consider suffering and I suspect in time they will. It’s just a slew moving process because of that while religious thing, suicide being a sin and all. Humans are slew to evolve unless something powerful is thrown at the like a severe disease that causes them to move faster. We live a rough life that is invisible on the outside making it all the more of a challenge to survive this society. Thank you for sharing your story. I wish you all the best !

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  37. STG says:

    I really appreciate this article. I have been thinking about these issues alot over the last few months and would like to share it with you all. I am deeply ashamed but think it might help to let it out.

    I am 24. My mum has suffered chronic back pain for the last 5 years – she lived with constant pain but managed to have a quality of life. She is also bipolar. In the last 4 months the pain has increased significantly and on frequent days unbearable. She is maxed out on meds and suffers from severe painful backs spasms that last hours. She is moaning in pain as I type from my room. She has tried to take her own life three times in the last 4 months. There is nothing we can do to alleviate her pain right now and doctors seem to be at a loss.

    I cant handle or cope with her pain, I have anxiety attacks and the hopelessness of being unable to do something is paralyzing. I constancy feel physically sick worrying about her pain or just knowing that it is there. I am unable to concentrate or do anything. I just can’t bare her being in this much pain. I am aware it is selfish, but it genuinely seems to be out of my control I cannot seem to contian the levels of fear, anxiety and terror this situations has given me. I have thought many times of her wanting to take her life because of the pain and the truth is I fully support it if it meant it would relieve her pain.

    Here’s the bit where I am a monster. My mum doesn’t actually want to take her life because of hte pain. Her attempts have been regarding feeling hopeless and impulses of wanting the pain to stop in the moment. She told us afterwards she doesn’t really want to die. Obviously that’s good and we have put measures in place to reduce the risks (locking away meds etc). But a tiny part of me wishes she would because I can’t handle her suffering. I feel incredibly guilty for having these thoughts and obviously would never do anything to act or encourage anything like it. However, I have thought that if I were in her shoes I would chose to die but then I am clearly not as brave.

    I have made the decision to try and leave the city and take a job somewhere else because hte truth is I cannot cope seeing her in pain. Don’t get me wrong no one likes it but it just fucks me up in a different way or to a greater extent. I can feel myself close to having a complete breakdown with the pressure and fear of it all. I feel like a complete selfish twat but I realise that I am getting mentally ill and I think it is the only way I can cope. She has been fully supporitve but I still feel like a horrible selfish dick. I can’t do much for her here and my auntie and my grandparents are around and able to help her as best as anyone can. I just want her pain to stop. I just thought it was interesting that I am the exact opposite of the people you encountered. I want it to be over for my own selfish reasons that I can’t cope.

    • leitis23 says:

      Your feelings are completely understandable. Chronic pain is very hard on the care givers too. There are feelings of helplessness and frustration and much more. I’m sure your mum doesn’t want you to worry so deeply because we know better than anyone that there is nothing you can do and certainly don’t hold it against you, but I understand that you don’t really have control over it. I would strongly suggest counseling, these are big difficult problems and having some help is a very good idea. Also don’t be afraid to take care of you, this is hard on you, treat it that way. You aren’t being selfish or a dick and there is nothing to be ashamed of. Every thing you are feeling makes total sense and thus is coming from someone in the other side of that situation. Also, and I know you are going to think I’m nuts, but have you considered sharing all these feelings with your mom?

  38. dan says:

    I too suffer from chronic pain due to a motorcycle wreck. Many times i have felt like ending it either by self amputation of affected limbs or just dying as a more perminant solution. It is true that we feel as though no one understands. When you do try to get relief, you are either breaking the law or you are a druggie, and all doctors care about is “you are hurting your liver” or something stupid like that. Right now the only thing that matters is sleep and some relief. The only out I have is alcohol and pain pills. Anyone who has been down that path knows the kind of sleep you need is not there. Let’s not mention insurance headaches. I am currently awaiting approval for nerve stem implant through insurance. I am losing my mind and not sure if it is due to insomnia or pain. All that to say that I do agree, more awareness needs to be raised.

  39. Bgt says:

    One of the best descriptions of pain and its scar that it leaves on you daily. Ive had 5 back surgeries with hardware, bolts ,cages, 27 fx bones , papaya injections,stimulation tens, therapy. Discectomys were the start of my problens. Then after getting nerve damage and severe pain, this has got to end. Best way i describe my pain let me take a hammer and beat on you every minute of every hour all day and night. Also let me light a fire and stick your lower back and leg in it. Im glad you have found some help. Im 59 with 15 years of this. Now the government saying we do not need pain control and we are causing the drug problem. Most people ,I think, do not get efficient pain control so I think they do take their meds to kill themselves. They do not leave notes because of family and they overdose intentionally. This needs be monintered. I am further down the river than you with pain. So i feel jumping out of the boat so to speak. Bless you. I hope you continue get some relief from pain.

  40. None-ya says:

    Wow. Though I feel slightly different (I’m definitely sad that I’ve been abandoned by those that are supposed to care the most) , I also just don’t know how much more I can take. I have pain from one condition and Dyautonomia so bad I can’t walk anymore. I feel constantly sick, in pain, or both. I don’t want to leave my dog. That and I’m just scared, but if someone told me if would be ok and give me a pill to go to sleep forever, od strong belying consider going that route. I can’t hold on much longer.

  41. pinkrabbits says:

    Thank you for writing this.

  42. Joan Car says:

    I suffer from a chronic illness myself (Chron’s). I’ve been through a lot, tried almost every treatment and nothing helped. I’m currently in a lot of pain. I’m not considering suicide in an immediate future, but if my condition continues to get worse, I’m afraid I’ll be bound to consider it- and I think we should be allowed to talk about it without being shamed for it. I’m not angry, depressed or frustrated. My quality of life is very low and I am aware that it might get worse. I’m in my thirties and I’ve lived with chronic pains for about 10 years now. My health was never good, I’ve had many operations and health problems even prior to Chron’s- basically since my childhood I’ve been in and out of hospitals fairy frequently- but is hard to compare anything with a severe case of a chronic illness. Knowing you (most likely) won’t get better changes everything, doesn’t it? It is a lot to take in and you have to be confronted with that reality on daily basis. It is hard for people to understand what it means not being able to sleep, think and something even breathe. Seeing your loved ones suffer with you is an absolute worst. As I said, I’m not considering suicide at the moment, but it is not a topic I’m avoiding (at least in my head). I think that a person can be ready to die even if that person is not depressed. At times medicine really doesn’t have an answer. So, sometimes prolonging the suffering is really unnecessary. I’m NOT saying that euthanasia is a solution for every patient suffering terrible pains, but there are those (I hope rare cases) when it might be an option to consider. Naturally, it should be avoided…but perhaps not under every cost. It is a hard subject to talk about….there are many people who thought they can’t go on but somehow managed to do it….and sometimes bodies do adjust to terrible things and humans find the strength to carry on even in the most extreme of conditions. However, those ‘miracle’ stories shouldn’t stop us from seeing the suffering of chronic patients and from trying to understand them. Having been hospitalized a number of times, I’ve shared a hospital room with two women who were dying. They were in agonizing pain and one of them was begging the hospital staff and her family to end her life. The other was not able to talk because she had a severe mental retardation but I swear with her eyes she was begging me to die. I cried for both of those women and I was there with them as much as I could (obviously not all the time because I had a hard time getting out of bed myself but when I could I was getting them water to drink, tried to comfort them). Still, there was not much that I could do. I like to think they saw an understanding in my eyes and that it helped them in some small way. I don’t think their families were aware of how much they were suffering because they were not with them 24/7 like I was (because we shared a hospital room). I didn’t actually see them die, but I know one of them did (they send her to an elderly home before her end because there was nothing that doctors could do) and the other was not going to get better- all of her family came to say goodbye and the doctors didn’t give them much hope. That experience really changed the way I think about euthanasia, more than my own experience with pain actually. I know that those cases were ‘terminal’ and here we’re talking about ‘non-terminal’ ones but still I felt like it is something worth sharing. Sometimes the loved ones can’t bring themselves to see in how much pain a person might be- and I totally understand that. My grandmother died when I was 18 (she was 82). For years I would hear her pray to God to take her. I don’t think she ever considered suicide as a option, perhaps it was her way of letting God know she was ready, perhaps it wasn’t. Nobody wants to hear their loved one pray for something like that, but I certainly didn’t judge her for it and I think I understood her- despite being a teenager at the time. She did fight until the end and I think she was glad she did. I’m not considering suicide but when I pray to God, I usually do say- if it is my time to go, I’m fine with it. It is not that I don’t desire to live, I just understand that ‘living at any cost’ may not be living at all. Your words really resonated with me. We are often afraid to speak about this difficult subject. Both terminal and chronic illness are incredibly hard on the family and friends, not just the sufferers. Reading your article helped me tremendously with understanding this difficult subject. It is so easy to brush it aside and say- deal with it but we should never do that. We should encourage people to fight on but still not diminish those whose quality of life is really non-existent.

  43. Joan, your reply to previous posts caught my eye today. If I may, I would like to comment on this and also it applies I believe to original post.

    I have a neurological disease that causes constant pain. Morphine and Percocets. I’m at a loss why anyone would take these for recreation however that’s another subject. They want to put me on phentenol patches now however the side effects imply I may not be able to focus as I still try and work some and lucky I can work from bed and still support family (4 kids).

    Anyway, I have signed up with Dignitas in Switzerland. Switzerland is the only country I have found with “no strings” assisted suicide for foreigners. The cost is expensive and you can basically do the same thing at home thru easy research for under 1k however back to my 4 kids. Who would find my body? Yes, I thought of doing in hotel even however the poor maid could be traumatized. I feel going to a more hospital environment causes the least trauma to those I leave behind so I am signed up and just need a couple more long shot tests/procedures and they are seeing if I could benefit from a study starting at UCLA. Once that is done, provided no improvement as I suspect, as I am a “realist”, I will board the plane.

    My doctors (14 of them) are all aware and my children are also. Recently I have broadened who knows to a few friends and entire family. I have not heard one word that was not supportive. I am shocked others have!!! “Shaming” really? I would sit that person down so fast and explain why I will never see, speak or even think of such a nasty judgmental person again and have the door hit them in their judgmental ass on the way out. I hope you have not been shamed no matter how you deal with your illness Joan! Some Horrible people out there and none of their f’ng Business!!!! Can you tell this subject has me worked up? LOL

    I agree with you Joan, The most difficult part is that your family is forced to watch your deterioration. This is why I must pull the plug after I see thru my final options. They standby hoping and praying there could be something, anything they can do to help.

    I’m not going to live in a pretend fairyland world and pretend everything will be fine, my doctors have told me clearly there is a slim chance anything can be done for me. I will see out there last idas and determine from there.

    I do believe in the miracle stories and if you can hang on you should. Also you should leave no stone unturned as to your diagnosis and treatment. I am an aggressive person so took this head on but it keeps progressing no matter how many drugs, tests, doctors and treatments. I think it’s been four years now of torture. Many times it’s not actual torture and eases up to severe pain but others the pain is so intense even with morphine that my body shakes from the pain for hours and hours and can barely speak. No thanks, I think I have got the life I can get out of this body.

    My only concern with my choice is that Dignitas will not allow or be involved in the harvesting of organs. Not sure if you saw the man from Utah on the National news the other day, but he was wearing a sandwich board with his phone # looking for a kidney to save his wife. I immediately called to see how to see if we matched and try to get around Switzerland harvesting laws. His voicemail was full so I texted and could tell it went thru but no word back yet. Would’nt it be great if us folks stricken down early could have an organized way to donate where they could run their matches and test the organs while alive??? That needs to happen someday to make these illness’s benefit others.

    Never did I think of euthanasia until this. I spent 100’s of hours researching that as well as my condition and am now comforted by the fact I know so many realistic options out of this nightmare. It’s like 1000 lbs off my back that there is a way out. The key is, I had to sign docs as well as my doctors while of sound mind. Wait and you could lose that option.

    Best of luck to all!


  44. Justine says:

    I agree with what you have said about suicidal thoughts & chronic pain. I’m not sure where you got your information from saying most suicide is out of anger & getting back at people. In my work as a community worker what I have seen & read is that most suicide is from loss of hope that life will get better & to escape the emotional torture one is experiencing.

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