Chronic Pain is Not A Competition!

Chronic Pain is Not A Competition!

By Ellen Lenox Smith.

Living with chronic pain is an incredible physical burden and at times a monumental emotional challenge but it is not a competition.

It is difficult to live with chronic pain and hear someone suddenly telling you how their circumstances are so much more difficult than yours. On the other hand, it is also difficult when one assumes that because you have too much on your plate, that sharing their difficulties would make you uncomfortable, so they don’t share any of the difficulties in their lives. I want to address both these issues and hope people will think about the consequences of words and actions.

Ellen Lenox Smith

Let’s start with those that attempt to make sure you know how much worse they are from you. Of all people, others suffering with chronic pain, loss of normalcy of life as once known, and the hardships that can be brought on really don’t need to hear judgements relative to one’s pain level. Judgmental comments should not be part of a pain warriors vocabulary, but it happens. Right now, I am out of the wheelchair, which I lived in for four years, my neck has been fused again with amazing results. However, this was my twenty-fourth surgery and life has been a huge dangerous life-threatening struggle. I may look much better to others, and presently I am, but my life will unfortunately be tenuous with my two incurable conditions. So, celebrate with me the progress I live with right now but don’t belittle what it has taken to get to this point!  We should all know that you can’t judge anyone by the surface appearance. I don’t know about you, but I can’t handle someone telling me how much worse their life is than mine. Maybe theirs is, but what is the point of trying to compare? I try hard to stay positive and care about others and pay forward anything I have learned to try to lessen the horror to the next person. But I do believe it is damaging to insinuate and compare pain levels or the severity of symptoms. We must simply respect the fact that we are experiencing suffering but comparing degrees of suffering is fruitless and can harmful emotionally. Chronic pain is not a competition and one should be listened to and cared about, not judged and compared.

And then there is the topic that makes me feel as if I am not still here living life. These are the times I have had people, who mean well, tell me finally about something difficult they have been facing but didn’t want to bother me. The comments are thoughtful, generally sharing that as they felt my condition was so much worse. These individuals felt that their issues were trivial and thus not worth focusing on. I know these people are trying not to compare and they clearly mean well. We all must face different challenges and who are we to say what is worse? When one finally shares something so important to their lives they have been trying to cope with, it makes me feel sad and left out to have not known they were struggling with difficult issues. I wish I had known and been able to extend compassion to them! I am not the one comparing and feeling my life is so much worse. We are all adults and have lived long enough to understand that life brings on so many different challenges – whether health issues, losses of love ones, jobs, home etc. So who are we to compare what is worse? At least these people are showing concern towards us, but please know we want to feel we are still here living life and caring about you. Let us return compassion to you and know we would appreciate you keeping us in the loop. Please don’t stop sharing your difficult challenges. Sharing is not the same as comparing. They are just as worthy of our concern and support despite us living with chronic pain.

The first example is generally brought on by one that is a bit more self-centered and needing us all to know they are having a difficult time that we need to be sure to notice. The second one is brought on by someone that cares so much that they believe their own lives do not have as much on their plates and feel selfish sharing their challenges. Either one, please know those of us living with chronic pain are trying to live the lives we have been given and would appreciate you knowing that we want to be part of life, be compassionate and caring about others, despite our challenges. So share your life with us, let us care and support you in return! And those that compare, please consider letting that go and instead remember you can’t always see what another is coping with. Just because someone chooses to smile and try to be pleasant, it doesn’t always mean their live is smooth sailing!

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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Authored by: Ellen Lenox Smith

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Geoffrey Nielson

What are the steps to finding a Certified Specialist of CRPS?

Kathleen Kaiser

This is the exact reason why I hate it when people are quick to tell everyone in a pain community that they have CRP and how bad it is because it is rated high on the Pain Scale or something to that effect. I once found out that a pain Warrior was telling everyone he had CRP and he was managing it without drugs. Everyone admired him for it and then I found he diagnosed himself with CRP. He said it was because he didn’t like going to doctor. who knows if he really had it or not. I’m sure he had pain I do not question that but to state unequivocally to everyone a diagnosis that he made up himself but he passed it on as a verified condition… just really bugs me.

Notasheep

I have never gotten the need for some to point out their pain is listed somewhere as the worst, or their pain is said blah blah blah. No matter how bad you are, I guarantee their are others worse. It is NOT a competition, if it is take me out of this game! We all have read stories and thought oh God, how do they manage to even stay alive? Stories of unknown strengths, perseverance and the ability to be factual with horrific circumstances. I am in awe of the human spirit exhibited here on these pages!
Just like the 1-10 pain scale, each person’s experience is individual and not measurable except to their own past.
This is the only undeniable truth, I hurt. All you have is my word for it. I hope you believe me, as I believe you when you say it. Simple.

Dooney

I have had my pain doctor comparing me to other patients multiple times and it really pisses me off. Ive been through a lot in the past 2 years; husband lost job, I was laid off from 25 year job, got pneumonia which turned into an empyema and had major surgery, lost health insurance, and rest too long to list. Seventeen years in chronic pain. I lost it last month and had a major mental health crisis. When I talked to my doctor about how difficult its been and how Im struggling, she makes reference to other patients and how well they do with adversity and why cant I be like that. Well Im not other patients. She also doesnt take into account the fact that my pain is undertreated and that makes dealing with life so much harder. People make you feel like your a loser and weak. Never any pats on the back for dealing with this horrific disease.

Ellen

Well said I have had issue of now that I have not been working and on disability and have a rare illness I feel forgotten My also an RN husband walked out on me 2013 and he was my best friend
We talk a lot about chronic pain and culturally many do not understand the ongoing need pain management which longterm opiods due work as shown by people on them for years, many without dosage adjustments
Reason chronic pain needs ongoing treatment is because the illness , trauma, cause pain is not
fixable
This is going come out wrong and I don’t mean it too but I sometimes wish I had a type cancer that was found early and treated and now life back normal even working again I devoted my nursing career to cancer so I have seen first hand how awful side effects treatments are or they die slow sad thankfully end of life care is so much better as are treatments. But these illnesses were so many are uptight
About our chronic pain treatment especially pain with opiods forget the illness causing the chronic pain is not curable, able be put in remission but with us because illness is with us rest of our lives.

B. Gould

Excellent article! I wonder how many are like me? I rarely speak to anyone about my condition and I am somewhat cut off from people. Sometimes I think I would like to unload my burdens and other times I don’t want to speak of my trials and tribulations..i was in counseling for a while but now I am too far away. Regardless of my condition I must put my family first even if it means sacrificing some help. My family has suffered enough because of my condition. But, I see others struggle when I do go to my Doctor’s appointments and I allow them the time to talk if they need it. It is so important to listen and it’s not a competition everyone is suffering in different ways.

Christina Johnson

I believe forcing people to limit their intake of opioids will be coming to Colorado this next year

ElizabethR

I’m still pretty new to this group (about 3 months)–and to admitting that I now belong to a collective that I seriously wish I didn’t: chronic pain patients. I’ve had back problems since my early 20s, but thanks to 3 reasonably successful surgeries, they didn’t adversely impact my quality of life until I hit 80 (2 years ago).

I have yet to experience either side of the competition coin and am somewhat, although not totally, surprised that it exists. We’re all basically in the same boat to one degree or another.

Rosanna Zaffiro

Dear Ellen,

I always enjoy reading your articles. They hit home every time!
Oh, I’ve talked to people who tell me they know what I’m going through because they’ve thrown their back out. Ha!! I wish that’s all my problem was!! I have 8 spinal fusions, nerve damage etc…
What hurts me the most is when I have to sit out holidays, bdays, weddings etc… And hear people remark that I have to toughen up and just attend. Or when I do make it to social functions and have to leave sometimes after 2 hours, people telling me to just hold on longer because they want me to meet their relatives who haven’t arrived yet, or wait for dinner to be served. They dont understand that at that point, it’s no longer a choice. I am suffering! I have always suffered in silence because not only do I not want to cry and complain, it’s best for my mental state to act as if I’m okay. But those who know me, know my plight. Why not just trust I know what’s best for me! I used to feel so guilty that I was letting others down. Not anymore. Today, I just smile at their requests, no more explaining, and do what’s best for me!!

Janet Oney

I struggle with pain from 3 level cervical disease.
I have pain pills I take.
The worst experience was an episode of Cymbalta Withdrawal Syndrome. I had trouble getting my refill. Then about 7 days after being without, I passed out. When I came to I couldn’t move my left limbs. I was pouring sweat. I had trouble speaking. The EMS thought I was having a stroke so they called a Life flight helicopter to get me to the hospital. It was such a horrible experience. I thought I was dying. I am back on it and it is effective with pain and also sweats (from arimidex), but I had no idea about the withdrawal syndrome until my husband started researching my drugs. It is not on the patient information from the drug manufacturer, Eli Lilly. It is not listed or mentioned in providers prescription information. Sad to find out the hard way, then you become angry it could have been prevented.

akbj

Thank you so much for writing this! Very thoughtful & well put. I have been around people who talked a great deal about their pain & seemed to assume that because I choose not to that my pain must not be severe. I also, along with many other’s have just begun to be titrated down on my pain meds last month. After having had the same provider for at least 10 years who moved to another state last spring I had to get a referral to a pain clinic. I ended up seeing the clinic director who also retired 4 months after I first saw him. I instinctively liked & trusted him but the new physician I was put with seems to be a pretty awful human being. She of course started titrating me the first time I met her without asking anything of my history, & is pressuring me to get several nerve blocks & other procedures of which I am leery. I had them done many years ago & felt they were more harm than good. They tried to pressure me to sign the release paperwork & would not allow me time to read the information. I have not scheduled the procedures & since they hold all the cards I’m guessing they won’t be happy. Those procedures bring a lot of money into these clinics & they push them by implying they will not prescribe to you if you won’t get them done.
She told me to try meditation & yoga as if in the 25 years I’ve been in pain no one had ever mentioned them before. I tried everything I could think prior to going on pain meds. Using those allowed me to work. (Am on SSDI now) I’ve taken the same amount of pain meds for 15 years. I’ve never taken anything illegally. She knows nothing about me. She also told me to take Tumeric which I dutifully ordered on amazon. I am just so irritated that a physician can do things that will make such a difference to me without knowing anything about me. I have no family nor friends in the state I live in, (Alaska) am widowed, no children. Thanks for being here.

Valerie Hirschberg

Ellen, that is so well written. You read my mind and shared exactly what I have observed. Thank you. Much application.

cindy

Thank you for this. I have one friend who has a lot of problems but focuses totally on my chronic pain and feels she has no right to complain at all. But she does. I just sent her this article.

Luckily, I haven’t met anyone from paragraph 1 yet.

And, I’m like you. My pain is awful but I still look at cup half full. Although sometimes reading these columns makes it harder. One recent column verbalized how we are slaves to the calendar and more — things I knew but never put into words or gave special thought about, as until I read that, I just viewed it as I view other immutable things in life that everyone has to live with in the background. These columns have made me aware that we should not have to be slaves to the calendar and all the rest and that I should fight for change. Which can be depressing and stressful. Sometimes, ignorance is truly bliss.

But with the gov’t attack on pain patients, that is no longer a luxury any of us can afford. I only learned about the issue about 3 months ago when my pain manager warned me of the CDC 90 mme standard and of likely upcoming changes to my meds — which is when I got on line for info and found this NPR and subscribed. My med reduction happened at our last visit..

Jon

First I have to say how grateful I am that I stumbled on to this site. Second, you hit the nail on the head. Every person’s pain and experience is their own and what might seem mild to one person can absolutely be a significant amount of pain for another. Thank you for sharing!

You bring up an excellent point Ellen. We should talk amongst ourselves not comparing or judging. Chronic pain is chronic pain no matter how one slices it. After all, those who don’t experience it can’t comprehend it. I realize some want to but for the most part, they can’t. They’ve never lived life in those shoes so how could they truly know? Not long ago I was deemed under the influence simply because I was seen walking down a flight of stairs holding onto the handrail and taking each step one by one instead of the traditional way. I will spare the details but I was humiliated, hurt, shocked as well as angry! I have two metal screws in my ankle and can’t walk stairs any other way. I never thought much about it and was horrified that others see me under the influence for taking the stairs the only way I’m able. It had great consequences and impact on my entire life. I was attending a very important class, though even with my doctor’s written statement to these people, it didn’t change much and they still look at me very oddly. I’m still in shock and dismay, after all what is a handrail for if it’s not to be used? At the time I also had a UTI and was bent over from stomach pain. With all of that being said those of us that are in chronic pain need to team up and be more understanding towards one another and with each other. There’s an entire world out here that doesn’t want to understand or can’t comprehend anything we’re going through. They’ve never experienced chronic pain so how would they even know where to begin? They wouldn’t and they don’t. That’s a lot of what’s wrong with the opioid crisis as well. People just don’t want to understand, just look at the repercussions that have followed this horrible Injustice. In all actuality it’s bad enough that those without chronic pain judge us for our disabilities. We in the chronic pain community shouldn’t start judging each other for that will simply make our world a much sadder place than it already truly is.

Well said.

Mike Greer

I am dealing with chronic pain from a spinal cord injury. I have tried everything, but nothing helps enough that I can function without my pain meds. I would like to know of every thing I can do to help change the legislation that is making it hard for me to get my meds. Who to write. Groups to join. Petitions to sign. And anything else I can do. Without my meds I am not able or willing to do very much. With them I can get the things I need to do done. I’m not getting the same amount that I have in the past so with less meds I can’t do as much.
Help me get in touch with others that have the same issue so we can band together and get the DEA out of my doctors office

Judie Plumley

I totally agree. I do find comfort in my groups, in knowing I am not alone in this terrible pain struggle. I haven’t met anyone yet who led me to believe they are in worse shape than I am but I know for a fact there are many. My group friends are kind and caring. I am blessed with family and friends who love me just for myself.
I don’t think the powers that be understand what an emotional toll they put on us. It’s hard enough to be in pain but this added stress is a killer.
I had 7 teeth pulled last Monday. My doctor had graciously given me 1 Xanax. It was the only way I could deal with the phobia I have. I asked about other ways to make me feel more comfortable when I got to the dental clinic. No. Any antibiotics or pain meds? No. Dentures right on top and I have a bone spur in the side of my gum where one was pulled 6 weeks ago. I have been really sick since then.
What I was shocked about was how much worse the added pain made me feel. I was up a lot last night because the joint pain in my hip is on fire most of the time now, so I cried myself back to sleep.
I know the pain in my mouth will go away. The pain in my back, hip and leg will not.
My heart cries for the torture they intentionally put us all though. It is so sadistic!
Pain hurts no matter where it is. I agree it is not a competition. Depression is still depression no matter what the reason.
I know for a fact if I did not have all of you and my family to support me, I would have no reason to live. And for all of you: I am so sorry for your pain, but I am so thankful you share.