Chronic Pain Patients – Suffering But Still Battling

Chronic Pain Patients – Suffering But Still Battling

By Liza Zoellick.

Always keep fighting, because you are not alone.

This is something I do not think enough of us hear. Chronic pain has an insidious way of making you feel ostracized because you find out, sooner or later, that you can’t do the things you once did or keep up with activities you did. It makes maintaining friendships difficult; it makes making new friends difficult and also makes family relationships difficult because people have such a hard time understanding that what you are going through is as much mental as it is physical. I do not think you can be in chronic pain for 6 months or longer and not feel depressed about your condition at some point. I have had people tell me that I just need to “get out of this funk.” How do you explain to someone who has no experience with chronic pain/illness, the incredible amount of motivation it takes to simply get out of bed some days? That this is far more than just having the blues and not having a good day. It’s day after day, hour after hour, pain that may vary in intensity, but is always there. So, what happens is that you begin to withdraw yourself from these people who do not understand, in favor of people, who while they might only be on social media, understand what you are going through. You isolate yourself because on top of hurting, who wants to be around people who only think it is your mental frame of mind and surely you can get past it?

Liza Zoellick

I can’t even calculate the number of people who have messaged me with remarks relating to hope. I gave them hope. That they read something I wrote and where they had been hanging by a thread, ready to give up on things until they read my post and felt like they were not alone. When I read those messages they really get to me. I want to reach out and give a collective hug to everyone and reassure you that you are not alone. I know it can feel so very lonely in this place. Even before my chronic issues, my bipolar left me in some pretty dark places. Scary places. I am acutely aware of how that darkness can creep in and steal every shred of light and suffocate you until all you want is to die. And the truly horrible thing about that feeling is that it renders you numb, and you forget all the good things you have because there’s just this one giant microscope that is focused on the bad. Even if there’s a shred of you that wants to get back, that doesn’t want to die, you look up and that tunnel to get back seems interminably long. It’s almost as horrible as the darkness. I’ve clawed my way back a couple of times and here is what I will share with you about it. 1.) The guilt you feel over being inches away from leaving those you love is not worth it. Even after time has passed, the mark you left on their soul never goes away. There is always a lingering fear you might give up. 2.) You realize, that there is a world beyond you. You awaken to a clarity, a knowing, that people suffer everywhere. For some, it is a state of existence, and still they fight. Some people are staggeringly alone, and they fight too. Why do they fight? Because, every moment we are alive and taking part in this life, it is an honor. Which leads me to the last. 3.) Some people don’t get to live the entirety of their life. Whether they are taken too young by illness, or violence, they do not have the chance to live. I know it is difficult to think of our situation this way, but it is an honor and privilege to live this life.

The only thing I can offer as a means of something to hang on to, is that you are not alone. I would recommend reaching out to those in the pain community, reaching out to bloggers, such as myself who understand and can maybe offer some insight. I think keeping connected with people who live around you is also important. They may not understand, but I can guarantee you they do care. And sometimes, just talking to them and sharing with them how you feel can really open up the lines of communication. Those who do not live with pain every day are at a disadvantage when trying to see the pain someone else might be living in. Our perspectives have a whole lot to do with our experiences. If you do not have that experience, how can you understand? Not everyone can empathize as well as another, so try to forgive their limitations too, and maybe with conversation they can understand this is more than just something you will recover from- that this is life. It’s scary to think that someone we care about will never get better.

Keep fighting. I know the road is tough. But you are not alone. I am right there with you. An invisible warrior beside you. We can do it together.

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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Authored by: Liza Zoellick

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Ann m lambertson

Hi LIza
My name is ann i am a chronic pain patient times are hard for people that have chronic pain people look at you like you are the scum of the earth bit the worse part is from month to month always the unsurity of weather you will be able to get your pain meds its awful i have a really good dr who i have been with for 30 years he knows everything about me he knows all that i have gone through and all i am going through yet the government is continuing to try and stop those in chronic pain from getting the only thing that enables me to get up in the morning and have any quality of life and the only thing that government officials have said to me is sorry but you are collateral damage in are war on drugs well i say to them we are more then that we are human beings with rights we have the right to have are pain alleviated but everytime i feel like things are getting better suddenly they are targeting us pain patient’s once again sorry im ranting things are getting bad again and i have no one to talk to and im losing hope.
Sincerly annie

Necia Saltmarsh

63 yrs old, palliative care, will die in agony. I am on the chopping block. I thought I would be spending this time with my grandchildren. But this atrocity will not stand. I will not live to see it, but for Jackson, Emma, Devon, Sterling and Violet and all of your precious babies and grandbabies, find your voice, and become your reps worst nightmare. If we are going through this, what will they go through? Extermination in the womb?

Alan Edwards

Debbie D. you have come to the same conclusion as I. What country did you decide on? There are several but one is a definite pick and an ally. If funds permitted I would emigrate. They do give hope, treatment and I could find work. That place is Israel. But I do not want to overload this tiny country.

Maureen M.

Yet another awesome writing Liza! Thank you for more encouragement.
Know that I am an invisible warrior alongside you too! Keep smiling. Maureen

Tess

Its so hard to keep fighting when ur own government is against u and trying to take ur life away. Because of what our government is doing my husband has been forced to hire a disability attorney. This is a job he has worked very hard to get and keep while having adhesive arachnoiditis, degenerative disc disease and chronic kidney disease. There are very little doctors that even know about AA and that has been a fight alone.Now our government has taken our lives away.My husband has dealt with stigma for years because people don’t see or know anything about this disease. He has tried steroid injections which we now know any invasive spinal treatments are strongly advised against unless life or death.physical therapy caused him flares.And chiropractors won’t touch him as soon as they find out he has AA.So please tell me whats left?He had been high functioning for years working a extremely physical job only because of pain control. And i feel thats the only reason he has not become bed or house bound by intractable pain.His insurance company hss denied his med saying it has not improved function and pain meds don’t work for chronic low back pain.But chronic low back pain is not his diagnoses.No policy makers are changing even though they know the cdc was wrong and all this built on false and inflated data.Addicted people are allowed medicine to promote stability and function but people with rare debilitating medically documented history are not.I just feel defeated and betrayed.

Bart Eason

Chronic pain for 15 years and all the meds..quit the methadone cold turkey to try to just live with the pain..had forgotten it..isolated, hurting, sick, fatigued..fear of next 20 years if I lived that long..close to 60..weed helped but illegal and arrested with two joints..while getting records together for new pain management Dr to give me some meds I tried KRATOM..was trial and error..threw up twice! Taste so bad..then one day in extreme pain ate 6 grams in yogurt..have not looked back..it has changed my life..i can function..i can fish…i can cook and eat..taken everyday now for 6 months..i felt so bad before I thought I had cancer..dr looked for everything and took many blood tests..nothing..just the fatigue associated with pain from my spine..because I can be active I can sleep now..no more thoughts of suicide..the future is so bright I gotta wear shades..THANK YOU KRATOM

Jim Moulton

I can understand what you mean. Sometimes I battle , sometimes I feel suicidal. My shrink is lowering my serax, which I have taken for 20 years, it is a mild benzo,which has helped a lot with anxiety and depression. My doc put me on gabapentin, which helped at first, but does not help much now.

Tired and hurting

I have suffered with fibromyalgia, CFS, degenerative disc disease, pain from 2 spine fusions a life threatening stricture stomach surgery, and the list goes on and on for the past 15 years. I stay with the dr I’ve been with for about 10 years because he prescribes my opiods to an extent, and i don’t have the energy to find another dr who I would need to try to give all my history and possibly have to fight to get the same medications I’m taking now, even though his office staff (most of them anyway) are idiots making minimum wage walking in off the streets that don’t really care about one patient or the next pained voice on the phone. I struggle to take a shower and brush my teeth a couple times a week. I worked and loved the same job for 30 years but had to go on disability in 2016 following two major surgeries within a year. I’m still fighting to be approved for SSDI. I’m sick to death of my dirty, cluttered house because of not enough energy to do anything about it. I just want to thank all of you for listening to me get this off my chest and wish you days with less pain, depression, frustration, and all that goes with having these chronic issues we suffer with from day to day.

Debbie D

I have had problems for about 20 years and I have been working then no doctor wanted to continue to help me. 8 months as I was in a wreck and NOW I have chiari malformation and the symptoms were awakened so now I am worse than before. We have decided that the country we live in has no concern for those of suffering on pain. We have found a solution after much research..
. we are moving out of the country so we can have a life. It only gets worse here everyday. The US can’t ever criticize another country on how they treat people. I suggest you do your research, sell your stuff, and get your stuff ready and get out of here and take your life back.

Cheri Furr

Thank you for this article. It’s nice to hear from someone who totally gets it, when no one else does. Losing my husband and living caregiver recently has made me feel closer to the edge. I am struggling every day to do the things he used to do, and it’s difficult not to give up. But he did not have a choice when his life ended. I want to stay alive for my daughter and my grandchildren. I know I have to keep fighting.

Fighting the tunnel

You touched me ! The struggle is real ! Very hard to share that struggle! Putting on a smile posting others trying to lift others is easy ! But is the darkness the lonely long nights that are hardest ! The fight you must struggle alone with ! You are right the tunnel is very long with many curves yesterday maybe good ! Today might not be so you back up in that tunnel . Two steps forward one back tomorrow is a new day ! As we struggle on ! Today we won ! Will we tonight ? Question becomes real in the wee hours of the night without anyone to hide from ! 😔

Bruce Stewart

Good blog post, Liza. I realized some time back that their problems are generally confined to the mental realm, which is why they think that we can use brain power or willpower to get us out of our situation. That’s how they supposedly get out of theirs. They think that pain is something that goes away eventually if you just wait it out. I mean, WE didn’t know that pain like this existed before we got ill, right? The sad fact is that we’d probably do something similar in their situation. Think of it that way. Like I always say – I can’t remember the last time I woke up and the only thing that hurt were my feelings! Rock on

Heather

(cont’d…)

People I know who are addicted didn’t get their meds at the doctor’s office… but if they had access to someone’s pills, they would. People I know started with alcohol, “experimented” with a street drug, and then it seems that when they faced some adversity in life, they blamed it for why they became addicted (one person blames his daughter because she ran away and acted out, and he “had to” use.)

Our society tells men, especially, to suck it up. Therapy is frowned upon and “weak.” But, we admit life is hard. So, let’s really actively build people’s coping mechanisms, their self-soothing skills. Let’s identify the hardships that may contribute to substance abuse and form a support structure for those situations instead of just having support groups for people AFTER they become substance abusers. Let’s not make people feel like they have to deal with everything alone… isolated.

PS – The Captcha codes are kinda killing me. Folks, copy your responses to another program before you post, just in case something goes wrong. It helps. I am sure I got the codes right before, but it says I didn’t.

Heather

Thank you for this post. I feel for my friends who are suffering through having their medications reduced or taken away. I’m afraid to lose them. We are vulnerable, and what is happening is unfair — even discriminatory — even persecutory!

I’ve felt closer to people online who understand my suffering than people I see every day. In fact, there’s a “wall” between me and people in my daily life. I have to remind myself what NOT to say, how to act so that I don’t make “normal people” uncomfortable.

It works against us, though, because it’s “normal people” who are making this legislation, who are influencing the media. I wince when my friend reminds me of how she gets by with Advil — she’s told me the extent of her arthritis — and since I’m younger, I also should follow her treatment plan. I was open with a newer friend when she said about the opioid epidemic, telling her that I take an opioid. She looked at me with a sideways glance and spoke with hesitation about how I need to be careful because she knows people who deal with addiction.

I know. I’m not blind.

So, I handle my meds carefully – with respect. I used to keep in contact with my doctor more often, but this opioid crisis makes every conversation with the doctor feel like I’m walking through a mine-field. I’ve always used alternative methods to deal with pain — hot showers, over the counter creams, heating pads and (self-)massage tools. I’ve added on meditation, too. I have a litany of self-care ideas (these are just the ones that come to mind! I even use green tea, which is a natural muscle relaxant!)

I’m not afraid of my meds but I respect them. I know that I can’t expect them to make me pain-free. I just want to continue to work, to continue to take care of myself, to get enough relief that I can sleep at night.

DEb

Very well said. Living with chronic pain is something I too have lived with for longer than I care to think. I retired early because of the pain and I have to walk with not one but 2 canes. Walkers are too low and using 2 canes is actually easier. There are times of depression but I get through it with prayer and the help of my husband. The hardest part for me is not being able to do the things I used to do.

scott michaels

Until the dea focuses.on illegal drugs.and leaves our drs.alone I fear.drs will.not help us.twithout the drs we have no way to get the medicine we need. THE DEA MUST BE STOPED THIER ILLEGAL ACTIVITIES ARE GESTAPO LIKE. THEY GET AWAY WITH MURDER.

Gary

Should our tax dollars fund the DEA. OR SHOULD IT BE DISMANTLED

Kris Aaron

Excellent comments, Liza!
I’ve come very close to putting an end to the chronic pain I’ve been living with for the past 18 years. People who don’t share our condition can’t understand that “chronic pain” isn’t about being tied to a stake and set on fire. By itself, the pain may or may not be devastating. But combine it with the fatigue, loss of energy and stress that comes from basic self-care (a shower and brushing my teeth can wipe me out for the entire day), and it leaves me feeling less than human.
Now, add in depression. No, Prozac and Zoloft won’t help. They treat the symptoms, not the reason. I’m depressed because I hurt constantly. Make the pain go away and the depression will lift!
Of course, our physicians don’t dare prescribe sufficient (or any) opiates to us, as the DEA will be arresting them and confiscating their assets in a heartbeat. So we’re left to suffer, cry, and consider taking a chance on illegal drugs purchased on the street.
Every day I ask myself if risking an overdose of fentanyl is worse than what I’m “living” with, and so far the answer has been “no”.
But that “no” is getting softer and softer. Chronic pain grinds our personalities down and turns us into zombies. Is this “living” or a living death? WE are the only ones who can decide, and we have to do it every day.
An estimated 10 million Americans are facing a lifetime of chronic pain. We are collateral damage, victims of a misguided war on “drugs” that has its missiles aimed at us instead of the enemy: overseas fentanyl and heroin manufacturers and importers. But it’s so much easier for the government to come after us, people too ill to fight back, than bring an end to the illegal importation of deadly narcotics.
And I’m afraid the government, in all its idiotic glory, is winning.

Jul

Yes, we must fight but why? Doctors r scared but have our medical records…a legal document…and in the previous years and still today, we r being thrown into a cage like experimental creatures…we are humans and as I see it, have legal grounds for being tapered and denied critical medications. Period.4

Thank you for sharing this story Liza. It is spot-on to say the least! Unless someone else you know is in chronic pain they could not begin to comprehend. Other than God above and my little niece, I’ve pretty much given up on everyone I know with the exception of my physician, my pharmacist’s and their staff. Life as I once knew it is gone. People do expect you to just snap out of it or want to blame it on depression one. If we could just snap out of it there would be no need for the National Pain Report. It has absolutely nothing to do with depression either for that with myself was very short-lived, my depressed days turned to days filled with anger for a country that calls itself the land of the free and the home of the brave. They got the second part right that’s for sure. Little by little everyone disappeared and I’m okay with it. In a way it’s for the best, I don’t have to hear their comments or the whispers behind my back anymore. I’ve heard everything from A to Z and chose to just keep silent. It use to hurt but not anymore. I’ve gone from a chronic pain patient to a chronic pain warrier and darned proud of it too. One either fights or dies, the only thing in between is one’s bed. I continue daily to pray for everyone of us with all the faith I can muster, many times I pray for folks by name. I would really like to hear from a lady who went by Lucky S. I’ve not seen a comment from this lady in months. The last one I read said she had a bullet with her name literally written on it and an empty gun under her bed. She had already talked with her husband and two young boys. The three of them agreed that if she had to leave this world due to such a decrease in her pain medication, that they would let her go. When they said an opioid crisis, they were spot-on also for that’s exactly what it’s turned into….

Virginia

Beautiful, Liza, but you forgot one important person who helps all who will call upon Him in all our needs. Our Lord, my Lord, the Lord, and Savior of the whole world, Jesus Christ!
I can, and have to do all things through Him who gives me the strength to do all things. If I didn’t have Christ, I would not be alive today.
I don’t mean to preach, and I certainly don’t want to offend, but if there is anyone out there who hasn’t tried Christ with all their heart, mind and soul and strength, then do so. He will take you through all things and give you a hope, promises you can count on, and life more abundantly. I’m a loving, living miracle of what He will do, if you will but ask.
This is my bio-feed back, my spiritual therapy, and my coping mechanism for dealing with my chronic pain and the crap I have to deal with on a daily basis with bureaucracy and physicians who are less than willing to listen, etc.
You see, this life is not all there is. There is a life coming which is much better. So chin up y’all, the best is yet to come.

Tabitha

We need more than hope now we need to fight and start suing the states amd cdc for neglegence . Call your senators and represenatives and demand THE CHRONIC PAIN PATIENTS PROTECTION ACT NOW.

joseph weis jr

[edit] For 40 years I fought and fought and fought against pain offer pain pills offer pain clinics offered this offer that I turned it down because it wasn’t good for me about 2 years ago I got tired of peeing in my pants before I got to the bathroom got tired of [edit] in my pants because I couldn’t get to the bathroom time out of my bed so I went to a pain clinic finally and I got relief my quality of life went from 10% to 80% and I didn’t get any more in 2 years I stay the same way now they’re taking it away from me all of us actually and that has taken my quality of life from 80% back down to 30% so I believe in quantity of life does not cover quality of life I would rather have 6 months of good quality than 5 years of measurable quantity obviously do not live in severe enough pain

James Thorne

That is a very well written and hopeful article. I grew up with a chronic pain sufferer in the 60s and the pain eventually broke their spirit and their mind, they withdrew into another world, and they slowly agonizingly died with no pain support at all. I was vaccinated against giving up. But since then, i have studied the issue. Constant intractable pain has an array of complex complications that affect every system of our bodies including our hormonal , nervous, cardiovascular, brain and adrenal systems. We are slowly shut down hormonally and our nervous systems begin to attempt to reset in an effort to counteract the state of constant agitation that constant pain causes. The result is a drop in levels of all hormones so that we become less adaptive and less human. Less oxytocin causes us to lose our will to live. Less thyroid and we lose our appetite. Less adrenal and we have no energy. We slowly shut down. Our brain can slowly go into a near coma state if confronted with continual unbearable pain. So never imagine it couldn’t happen to you. It really could if you are in a regressive, politically motivated Nazi sadistic, murderous, callous disregarding of life policy environment opiate policy like we find ourselves in now. The current administration is actively attempting to murder 10s of millions in order to cut costs. Just the opiate meds cost over 600 billion in 2014 to insurers. But the insured paid insurance premiums. That isn’t the issue. The insurers still consider every claim to be a loss of their money. So they invent a false narrative. Blame opiates for all the ODs in America when they know the Mexican Cartels importing Heroin with fentanyl analogs is the real problem. They don’t want to go after the mexican cartels because the cartels pay the government and the DEA to leave them alone and they would start killing politicians and DEA agents if they were bothered. It is so much easier and more lucrative to attack pain clinics and pain mds. and by putting them out of business, save the cost of all the pain meds by depriving all the disabled veterans and chronic pain pts of their meds. That way 10s of millions will die prematurely and or suicide so social programs will save over a trillion a year and the government can also sue the opiate manufacturers for $Billions. That is how corrupt our Government has become. They are killing us because it is the expedient way to make money and promote their policy of GREED.