Chronic Pain and the Grieving Process

Chronic Pain and the Grieving Process

By Jessica Martin

“Sometimes to stay alive, you have to kill your mind.” – Unknown

The things in my life I feel that I have lost as of late are difficult for me to face at times.  However, when I look at the picture above just taken this past Friday, Earth Day, I am reminded that I survived the biggest “loss” I thought I could ever lose: myself.  I will be thirty-five in June and this past Friday was my dad’s birthday and he turned sixty.  It was the first time age actually scared me and yet at the same time helped me to count my blessings.  I started thinking back to when I was in my young twenties and on the verge of ending my own life because of chronic pain.  Had I not faced the grieving process (the chronic pain grieving process) the beautiful child above would probably not be here, my dad may have spent such a beautiful birthday without his only daughter, and the smile seen in this picture would have been as fake as plastic surgery.

The first step I took in facing the chronic pain grieving process was loss.  When most people think of the grieving process they think of a loss of a loved one or even the loss of a marriage/relationship. I was able to find what six things I felt I had lost when I was first diagnosed with chronic pain and entered the Pain Rehab Center at the Mayo Clinic.  I will share them with you now:

  1. Loss of health.  I am in pain twenty-four / seven and spend every second either thinking about pain or taking the next medication or sitting in the next doctor’s office.  I am drinking profusely, smoking tons of cigarettes, and I do not even recognize myself.
  2. Loss of trust in doctors: I feel that all the doctor’s I see think I am making up this pain even though I had brain surgery.  I feel they do not believe me because my scars are not longer visible.  Doctors keep telling me: “This medication will take the pain away” or “Ten sessions of chiropractic work will relieve so much of your pain” etc. etc.  When what doctors or specialists do to ‘make me better’ does not work I feel like they do not believe me.
  3. Loss of social contacts: I have lost so many friends and family members.  I can only really hang out with friends if we are drinking because if not I am one hundred percent focused on the physical pain.  If I go out with friends or family and my pain flares up, I will be miserable and ruin everyone’s time.  Who wants to hang out with someone who is in pain all the time? I do not even like to be around myself.
  4. Loss of family: I have put my family through enough.  They deserve the happy, healthy Jessica they had before chronic pain entered into my life full speed.  My dad has already done so much for me, how can I ask him for more help?  I am too embarrassed to tell the rest of my family and I want them to think I am okay.  I miss my family.
  5. Loss of fun: I used to love reading, writing, laughing with friends, going to the movies, bowling, or just walking around the lake: I have none of that anymore.  Gone.  All my passions lost.
  6. Loss of my dreams: I never wanted anything big.  I truly just wanted to be a mother and have a family and take care of people.  I cannot even take care of myself.  I used to want to be a writer but that’s impossible, I cannot even read for more than one minute without my mind going right to pain which leads right to tears and I feel hopeless.  This has been my hardest loss.  The thought of never being a mom or having a family and helping others truly makes me feel useless and pushes me to want to give up.

When a person losses someone they love they feel some of the following emotions: hurt, emptiness, loneliness, anger, disbelief, sadness, depressed, alone, out of control, and sick.  The same exact emotions come from the feelings of loss due to chronic pain.  When a person losses someone they love they demonstrate common behaviors such as: not eating or eating too much, insomnia/not sleeping, crying endlessly, thoughts that they should just die as well because the thought of living without their loved one is enough to want to end their own life, people with drawl from life and isolate themselves, many people develop bad habits in order to cope with their loss: smoking, drinking, drugs, etc.  I can tell you from personal experience, most people (including the old Jessica) demonstrate all of the above behaviors and had all of the same thoughts because of  the diagnosis of chronic pain.

If people who do not understand chronic pain or the adverse impacts it has on a person’s life, mind, and soul, I urge them to think about a loss he or she has faced in their life and try and remember how awful it felt.  I was unable to get to a good place in my management with chronic pain until I went through the grieving process of chronic pain.  I will share that personal process with all of you tomorrow.  For today, share this with one of your loved ones.  It is very hard for a person to understand an invisible illness.  However, we all know loss.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Jessica Martin

There are 28 comments for this article
  1. Fred Brown at 10:59 am

    Your article was handled well with the exception of one part which I would like to comment about. Perhaps there is too much thinking and when you say “I am in pain 24 hours a day, seven days a week and spend every second either thinking about pain or taking the next medication or sitting in the next doctor’s office”.

    I have lived in chronic pain for 20 plus years now and in the last 14, besides the 4 cervical surgeries, medications, and many different modalities I try and use to the best I can Diversion of the mind even with being on different medications. I try never to use the word pain but rather discomfort. Yes, I do use it when the need is there but not every day.

    I do feel it is healthy to grieve about what medical issue you have but some time and one cannot put a time limit on grieving perhaps look around at what you do have.

    Fred Brown Founder
    Legitimatepainpatients.org.

  2. Jean Price at 12:07 pm

    Alicia,…you are so very welcome! I believe understanding grief can help us in all areas of our lives, not just with pain and the losses like you’ve had. I gladly offer you my email of jeankprice@hotmail.com if you ever want to get in touch. And I am on Facebook also. Please feel free to reach out if you want to, I’d look forward to it. I was just thinking the other day how many special people I’ve met because of pain! And even some fast friendships came from this. Once again I was reminded how good can come from the worst scenarios, with a little help from above! Blessings on your grief work and your dealings with pain.

  3. Alicia smith at 11:20 am

    Thank you Jean…I will look into your recommended reading. I have been diagnosed as having complicated grief and continue to work with a counselor. I appreciate the reality of grief and the resources that you share.

  4. Steve at 5:08 pm

    Very well and insightfully said, Jessica, resonates with me. Thanks for writing. Thinking of chronic pain as a group of losses is very helpful.

  5. Jean Price at 8:57 pm

    Jessica…the world of pain management is so overdue in including the issues of change and loss in treating chronic pain! Most people they see are grieving!! We don’t really choose whether to grieve or not…grief happens, those feelings happen! The choice is whether we grieve in healthy ways or destructive ways. In hospice, grief counsellors rarely used antidepressants/medications except as a temporary crisis intervention. Why? Because it’s important to process your feelings and allow the emotional distress they can cause so you can work through them. Numbing grief only serves to compound it with additional grief somewhere down the road. And most people including those with life limiting pain have unprocessed grief from other changes and losses in life that complicate their present grief work. The classes and experience I had in a job dealing with Seniors and hospice and a grief and loss program prior to my life experience with pain have been an invaluable resource to me AND my family. Grief also touches on our spirituality…the why I am, who I am, and what am I here for questions that we all have in life…and they come racing at us when life with pain happens. When we explore our grief we can also explore our spirituality, and turn from it or strengthen it. Your article starts the discussion of grief…I hope to see more of this throughout care for those in pain. To learn some general issues about grief, most hospices offer classes for the public at no charge. I highly recommend those. There are also counsellors who deal specifically with grief. If anyone feels counseling might help, again I highly recommend starting there. It can help us feel more whole, more worthy, and more able to cope. In short…it can improve your life, and the lives of those you live with. Our families have losses too, due to our losses and our function issue. This can be equally important for them.

    Alicia…you had so many losses, all piled up. I can’t imagine how hard this has been. When we have multiple losses, we have what is termed “complicated grief” or “compounded grief”. And it can be devastating in just the sheer scope and intensity of feelings we deal with. I’m so very glad you have your faith, and it is a life saver for many of us. Prayer is a powerful tool to connect us and faith can help us live one day at a time, one moment at a time. I have a book, “God Calling” edited by A.J. Russell, which has helped me through many long nights and days. It’s not very expensive, usually under eight dollars and I think you’d appreciate it. It was recommended to me and I pass that recommendation along to you. You are a courageous, insightful woman who has come through so much and I send you my well wishes and prayers!

  6. Carol at 7:45 am

    I hear all of you. I have been a chronic pain patient since early 90’s, I am 71 yrs old. I am worried about my pain clinic taking away my pain medication. It helps me and it is unmanageable to think about this possibility. We must fight this with more than long posts. Write to your elected officials. God Bless

  7. Cayce at 5:42 am

    I have long struggled with thoughts of giving up, with grief too great to be dealt with, or so I thought. Turns out, it’s manageable with the right amount and right selection if antidepressants. Not even my therapist was able to help me get here, this level of being is all me & living better thru chemistry. I understand grieving the loss of myself even tho I’m still here. It’s such a frightening paradox, that I cannot begin to describe it to anyone else. I think I’ve depressed other people whom I have successfully explained my predicament, in that I grieve for the multi-layered persona that I once was, with dreams, aspirations, ambition & hope; whereas, now I am a shell or shadow of that person. I am the broken remains of that awesome girl after pain has stripped everything away. This is not hyperbole or some pity party, this is real, this is what happens, this is the natural erosion of the soul that happens to people when pain is all they experience, day in & day out. And while I no longer actively engage in suicidal thoughts, don’t feel like it’s a terrible idea either. I’ve already grieved for myself, now everyone else just needs to suck it up and grieve for me as well, they aren’t losing nearly as much as I did.

  8. Alicia Smith at 7:09 am

    I love the way you explain the details of loss and the feelings of loss of self because of cp.
    I have been in pain for 3 years after having shoulder surgery, which lead to nerve damage..
    Like you said, my whole life revolves around pain. My schedule, social life, etc. It’s hard to explain that I can’t do this or that because I’m sick again. Some people just don’t get it.
    I lost my husband to suicide in 2010, my dad died 21 days later and my mom died 11 months later. To say I was grieving doesn’t even touch the surface. I was devastated to say the least.
    When you talk about crying, I cried for 98 days. Funny how you remember specifics.
    Today, 5/3/16 I just woke up in pain and will spend my morning with the only one who comforts me and has kept me from loneliness, alcohol, drug abuse, suicide, depression, smoking, etc. and that is my personal relationship with Jesus Christ.
    He is the ONE that helps me and never leaves my side. Read Jeremiah 29:11-13. It literally saved my life.
    Thank you for your wonderful post.

  9. Sheldon at 2:22 pm

    I just hope that someone other than CP suffers see this and maybe i can save just one relationship and i will feel like i made just one thing good out of the suffering.

  10. Sheldon at 1:09 pm

    Jessica thank you for speaking about you situation bc other people going through similar situations no there not alone. You are beautiful and have beautiful daughter and if we have anything in common its the fact that our kids make us keep fighting for there sake rather than ourselves sake at times.If you havent had chronic pain you will never truly understand what it does to you and your loved ones. Ive been dealing with C.P for 19yrs and was 23 when i injured my back. Over that time it has taken from me every thing i loved and cared about. I went from working everday and playing sports and just enjoying life to this.For me it didnt take me long to understand that what im suffering through will be the most difficult thing for those who wont listen and try to understand to even sypathize with because i myself didnt understand or want to except it. Im not looking for a pity party just some understanding and help from those that can help like FDA, CDC, gov’t in general with something i have NO control of. What people dont understand is C.P- isolates, depresses, takes everything you have just to wake up and make it through another day of suffering, most important is it changes you in ways you never could have imagined. Noone it C.P wants to tell there children “sorry daddy cant today im hurting”but thats what i have to do way to often. Im getting a divorce and gonna lose what little i was trying to hold on to all because her lack of trying to understand and the fact “sickness and health”didnt matter but there again i dont know if i would understand but what i do know is i would have tried to understand and learn about the person i said i loved. I cant take another day of “YOU LAID ON YOUR TAIL ALL DAY” amongst other demoralizing words. Its sadly better for me to let her go and try to keep what little of myself i have left. So i made the choice that she needed someone that could do more for her. I will probably never find anyone who would understand so that will probably mean more loneliness. I could go on for days about how C.P has changed my life for the worse and im sure i will in the future because i only have my mother that listens and tries to understand. Noone else ive found does,other than this website which ive never been great with computer but i thank god i now have others to share and understand.Now its trying to find a doctor that isnt scared he will lose his career and will listen and understand that medication is all that gives me any relief. i know it will never keep me out of pain but it can help me deal with it and give my kids a small part of there dad back and thats the best i can hope for now. Like i said im not computer savvy but would like to speak to someone that relates and my fingers are tired so if anyone would like to talk i would be willing to talk over phone. Please only use this number if it relates to this blog.(804) 929-6894

  11. Mary Longmuir at 1:08 pm

    Your article hits home without having a pity party we often hide behind our smiles . The old me is just a faint memory just know your not alone and you should utilize every avenue for help ! Thinking of you and I wish for you a pain free day your honesty in this article touches the heart of every person living in chronic pain .

  12. Dee Green at 9:37 am

    It robs people of so much life 😔 Added to that the current opiodphobia that is causing unnecessary suffering in addition to the loss of our former lives and you understand why suicide rates have increased! The lunacy must end! Human kindness must prevail if we are to live in a free society! Because We Are Not Addicts and We Are Not The Problem!

  13. Lee at 4:40 pm

    You wrote so eloquently about a heart-wrenching situation that most people do not understand at all. I was finally diagnosed with Cushing’s Disease after a 5 year battle to find a doctor who would listen to me, and put my history together with the lab results and ongoing health problems. In the following years I dealt with the pain from Cushing’s, and eventually there came the diagnosis of Rheumatoid Arthritis. I’ve been blessed that I haven’t lost myself in some substance, but I have suffered most of the other things of which you wrote. I have apologized to my family several times for my egocentricity, but I truly felt it was a matter of self survival. No one believed me, and my family didn’t understand (so did they really believe?), so I had only myself. I think many of us suffering from chronic pain feel this way.
    Thank you for speaking up, so that others may learn. I look forward to your next comments.

  14. PD at 3:20 pm

    Me exactly! I look into the mirror and ask , Who is this person???

  15. Angie at 2:55 pm

    This is so me the last 10 years. Throw in 2 aging parents in poor health, taking care of both of them and their pain and suffering. I was their only caretaker, no help from siblings. Now they are gone. They were the only onies who understood what I was goingng through.
    People don’t want to hear your problems. I would love to date but who wants to take this on.
    It is very lonely.

  16. Sharon S. at 2:34 pm

    Jessica M. As I sat reading your story I was moved to tears. I have so much empathy for you. You put it so simply and eloquently. Your story is my story as well as many many others. All of as chronic pain suffers have been through so much. Doctors, testing, pt, to, more doctor visits, more testing, more medicine….ect ect ect. They cycle never stops. Now we’re about to go through even tougher times it seems. Getting our pain medication. Due to the opioid/heroin problem in our country it seems we will all be affected by this. I’m sure there are an astronomical number of people in chronic pain who are already feeling this change. We all need to share our stories with the CDC, our state & federal lawmakers. Our voices need to be heard so we don’t suffer anymore than we already do. I understand the epidemic however, not all of us chronic pain sufferers abuse our meds. I don’t know the answer to the epidemic but I do know we should pay the price because of addiction. They are worried about the addicts dying of over doses. Well, what about the people with chronic pain who won’t be able to get any medication? Will they go to street drugs to aleviate their pain or worse, kill themselves? So, I ask of all of us chronic pain suffers to PLEASE get your stories out there to the people who advocate for us so we aren’t the next epidemic they’re trying to stop from dying. Thank you all!

  17. Daniella uminer at 2:31 pm

    i totally relate we have to find friends who have chronic pain and share the same pain as us thats who truly understand…besides groups on f.b we have to find people in our own town that maybe can visit each other etc..even just coffee etc.so we can have friends can do very low key activites etc.

  18. John R at 1:12 pm

    Jessica you have put my past 18 years of life into perfect words that I have never and probably could never express. It is as if we were are the exact same person. I can’t believe how well you have put this into words. Thank you so very much. I have shared it with what family and friends I have left. Maybe your words will help them understand finally what I go through every second of everyday of every year. They can’t understand why there is no cure. They sometimes feel I’m faking or being lazy. Who would want a life like this where your body is driving you almost insane with pain that never goes away. If you’re lucky to get a short time of pain relief people sometimes think even more that you’re faking or doing it for the drugs. Please really!!!!! I’ve had some many surgeries tried so many different drugs and therapies even natural. Nothing!!!!!! I’m not giving up though. Yes I have my highs and very low lows but we can’t give up. I know I’m not putting it in the excellent way that Jessica has but we must all fight back. We must fight the insurance companies, the doctors, the FDA, even the government for more funding and awareness. I want to end this by again thanking Jessica for putting my feelings in such great words. Those words even help me understand my feelings better. Thank you so very much God Bless you and be well to Jessica and all Chronic Pain sufferers out there.

  19. Alyse West at 12:25 pm

    I to cried while reading your post…my heart felt everything you said! Thank you for your post.
    After being diagnosed with CRPS/RSD…I had no idea what my future would be. I was diagnosed in 2005 after two unsuccessful knee replacements. Two years ago on the advice of my doctor…I told my friends and family about what this disease has done for me. My husband is my rock…and love! Never once has he been negative or directed any
    anger towards me. What a blessing God has given to me…my husband has
    learned exactally what this disease can do! I was finally at the point where I could share with my friends and family members. My closes friends have been so supportive and given me unconditional love. I will forever be thankful to my friends. Then over the hurtle…friends now know! A year ago I chose to tell my two grown sons. I listened to my first born son berate me
    telling me that my diagnosis was fake…the doctors use CRPS/RSD
    when they have patients
    that are always complaining and feeling sorry for themselves. My
    so called disease would not kill me! I don’t hear from my son unless I call him….do I call him often?
    I call him every few months just to hear his voice. Do I think about him? I cry myself to sleep most nights wishing he was part of my life. My second grown son…I never hear from him! I lived two blocks from him….four years never seeing him! This past November we sold our home and moved to Paradise (yes…name of the town) My husband felt he needed to move me where there were no memories. Bless him…
    we live in the mountains and everyday … Is blessed! Snow…deer…
    bears…mt. lions…bobcats and the beauty of God’s creations! I don’t have that constant feeling of loneliness to often anymore! Then hurt in my heart will probably
    never go away. Your post has been a blessing…thank you for sharing…with the help of people sharing this disease…I can whether this storm in my life…I know some days will be filled with more pain….
    With the Lord I will get through.

  20. Mark Ibsen MD at 11:04 am

    Pain is an F’N terrorist.

  21. Jeremy Goodwin, MS, MD at 10:45 am

    This is important. It is what even most specialists in pain management, psychologists or otherwise don’t really ‘get’ except on an intellectual level. And that isn’t enough. In someone’s presence, when you can FEEL it as if it were you, then you get an inkling. Only an inkling? Well, the time spent feeling it isn’t 24/7. It is but a powerful moment in time. A moment of insight upon which it is incumbent on you to act in order to end a true helping hand.

  22. Renee Mace at 10:19 am

    Thank you for sharing what all of us feel every minute sometimes seconds of the day and only to be turned down for medication that would give us a better life because of the new law of (One dose size fit’s all) and if you need more then you are a Drug Seeker. I am having a very hard time with this.

  23. Lisa at 8:43 am

    I completely feel the same as you. My heart really felt your comments bc it is like me speaking. Always looking at the world and feeling like your not part of it. Seeing everyone around you so happy and wishing you could obtain it hurts the most.

  24. Cathy M at 7:23 am

    I really appreciate your speaking out, and I look forward to seeing the next part. I also went through (and continue through) a grieving process with my chronic pain – it’s NOT self-pity, it’s a legitimate grief over losing so much. To be harsh with ourselves is wrong; we are doing what we can and I’m amazed at the courage I’ve seen/heard. The US doesn’t really support grief of any kind; we are supposed to “get over it” and get back to work fast – so we’ve lost the community that might have held us as we learned to live with the new reality. I’m grateful for these online communities because they validate my struggle and my grief, and encourage me to keep going. Many times it’s hard to know when to push back (to advocate for more help, more treatment) and when to accept the new normal. That’s an ongoing discernment and it takes a lot out of you, too! I truly don’t think people w/o pain can understand the extent to which chronic pain affects our lives, so we have to keep speaking out so that they at least hear and understand it’s not “just us” but a vast number of people who honestly experience this disruption. Thanks for sharing your story.

  25. Kerry at 7:12 am

    Your article explained exactly the path my life has taken! I was diagnosed with fibromyalgia , lupus, and severe osteo arthritis 8 years ago. Loss is exactly what I’ve experienced. I am no longer that daring fun loving physically active woman I used to be. My days now consist of making sure I get my pain meds on time,going to doctors appts. and attempting to keep up on my motherly duties at home. All I wanted was to be a good mom and I struggle even with that. That’s my story but I am not a negative person. I do deal with those “grief of loss ” feelings every day. I so miss, hiking, bodybuilding, yard work, and traveling . I take one day at a time now and thank God things are not worse.

  26. Candice Peoples at 4:48 am

    I feel this very same way,i just couldnt put it into words as well as you have my friend. I started suffering about a year ago..it started with 2 bulging discs,severe ddd,spinal stenosis. Surgeons say theres nothing they can do,ill just have to live like this for the rest of my life,so everyday i pray it will be a short life. So i feel for this lady,all you can think about is your pain,and the next pill. Then wonder where your pain will be tomorrow. Life is so very sad lately. Your truely,Candice

  27. Doug M at 4:18 am

    Your words are right on. I really like how you broke it down in steps. It all boils down to getting over our self pity. I understand everything you’ve listed and I have gone through every stage myself. I was drinking far too much and smoking like a chimney. Since I realized that my drinking was effecting my marriage more than my pain was. I am currently working on quitting smoking and I only drink now socially, at BBQ’s or if my wife and I go to dinner with friends or family.
    I decided that it was time to quit feeling sorry for myself. Yes, my life has changed tremendously since the injury that thrust me into the world of chronic pain. I used to be a serious outdoorsman, hunting, fishing, softball, snow skiing and golfing every chance I got. Now, I spend more time reading, blogging and talking with others who suffer crippling pain every day. I am happy to say that writing comments and posting articles about chronic pain to social media has been very therapeutic for me. Yes, I miss my morning tee times and the sun on the golf course, but I believe I’m working my way back to it.

  28. Kris at 3:20 am

    I cried as I read your story as you are almost describing me except with 1 of my chronic pain conditions I can not even drink to escape ..so I have not 1 friend..no family cares or the others do not believe..I never thought about it the way you described it.

    But your word’s were perfect as I am now still sitting here in tears…

    My heart goes out to you and everyone stuck with a chronic pain illness that has lost them selves yes we are gone

    healing hugs to you