If you’re in pain, don’t “be positive.” Be honest.

If you’re in pain, don’t “be positive.” Be honest.

By Tom Seaman.

I often hear people with pain and other chronic health conditions say the following: “I am trying to be positive, but it is so hard!” Other people see us suffering and sometimes tell us to “just be positive,” as if that is going to solve our problems. I live with a painful, life changing neurological movement disorder called dystonia and I know how hard it is to be positive and how it feels to be told that all we need to do is be more positive, which is basically a disregard for how hard the struggle is.

For many years I suffered with brutal symptoms of pain, along with severe involuntary muscles contractions 24/7, anxiety, and deep depression. “Being positive” was not even in my vocabulary. I wanted to die and everything in life, and I mean everything, sucked! That was my reality and if you read my story, you will see just how profound my depths of helplessness and hopelessness, and I still suffer with all of the same challenges to varying degrees. The difference now is my mindset which has been the catalyst for change.

When our health limits our activities (in my case I could barely do anything other than roll around on the floor all day in pain for years) and we lose parts, if not all, of the life we once had as I did, it is difficult to not be sad, angry, and scared, to name just a few emotions. This is why “being positive” is so hard. But what exactly does one mean when they say, “be positive” or “I am trying to be positive?” It is a different answer for everyone I’m sure. I think more than anything, it means being optimistic, but as I discuss below, we have to be optimistic about something tangible and realistic based on positive experiences and outcomes, such as a treatment that helps or when others understand our plight (just two of many examples). Any ounce of help gives us hope which creates optimism about getting better, fostering a “be positive” attitude; and when you find things that help, hold onto them for dear life.

To me, being positive is a mindset where we acknowledge the struggle and focus on solutions rather than problems; looking at obstacles as challenges to overcome rather than setbacks. It does not mean denying the existence of mental and physical pain that everyone experiences to varying degrees. If we deny it or ignore it or try and “be positive” when all hell is breaking loose, there is no way through whatever challenge we are facing. There must be more than just saying the words. There has to be meaning and purpose to our lives beyond suffering that we strive to achieve, and it must be practical and attainable to feel hopeful. It also means taking good care of ourselves, which can be hard because most of us want to do more for others than we do ourselves and live with guilt for putting ourselves first, so maybe do so with this thought… treat yourself like someone else you are responsible for taking care of.

For those who have read my book (Diagnosis Dystonia: Navigating the Journey) and/or my articles and blogs, you could make the claim that I am all about positivity. This is only true to an extent so let me clarify; my message is not, “just say and think positive thoughts and everything will be fine.” Not even remotely close, but that is how my message is sometimes perceived and how some people mean it when they talk about “being positive.” As many of you have probably experienced, it doesn’t work long term because that thought alone is essentially meaningless. Other thoughts and a proactive plan that produces favorable results must accompany it.

Without a plan (setting attainable goals and steps to achieve them) attached to “being positive,” for a lot of people it ends up turning into more suffering because they think they have a handle on their situation by only saying the words, “be positive”, because this is what our culture jams down our throat. When the you know what hits the fan, these people fall even harder and hurt more because they feign positivity and avoid confronting their suffering. It can be a dangerous game. Except in certain situations and around certain people, there is no reason to wear a fake smile and pretend that life is nothing but a bowl of cherries if it isn’t, so don’t deny it. Let it be what it is and express your emotions.

Those of us who suffer with anything in life (which basically means everyone if you are alive) need to grieve short and long term life challenges, and with that comes a lot of emotions that may be viewed as negative… but they are all okay to have and healthy to express. In fact, I think it is actually a positive move on our part because expression of true feelings means we are facing our problems honestly. It is more stressful living in a fake world of positivity or a chronic world of negativity, especially when neither is reality.

So instead of “being positive”, be honest, realistic, and proactive. Work hard to accept that things are tough, roll with them, be in a solution-oriented mindset rather than a reactionary one, and if you have moments where you need to scream and yell and cry, by all means do so, but if you live in this place all the time, it will only make suffering worse because it will ramp up your stress hormones.

I like to say, “how do I/we make the best of a difficult situation.” This is a non-reactionary, non-emotional, rational way of recognizing that a tough situation exists and there are ways to make it better if we are open to options, rather than shutting down and giving up and being angry. No amount of anger will take your pain or other symptoms away. Anger only stirs up stress chemicals which make our symptoms worse. As much as you may resist this next thought, we MUST find a way to cohabitate with our pain/problems, no different than anything we don’t like such as the shape of our nose, grey hair, wrinkles, excess weight, or anything else we would prefer not have.

Also critical is to not get too high or too low emotionally, so the way we characterize life events is very important. Be as even keeled as possible. An aroused nervous system cannot heal, which is why we MUST calm our minds. If you want to fight something, fight the desire to give up on yourself during tough times by viewing your obstacle as a challenge to overcome, which will change your mindset and reduce the negative toll REACTIONS to life events have on your health. Life events in and of themselves are not the main problem. It is how we react to them that determines the long term health of our mind and body. If we can control our emotional reaction to pain or other physical ailments, or any other life experience, we can reduce the trauma it has on us. This is how we win the “fight” and when we can say, “I am being positive”, and actually mean it.

Tom Seaman

Tom Seaman is a Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram.

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Authored by: Tom Seaman

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Steven

Why are our doctors after pledging do no harm are they allowing this genocide? With a national union they could put a stop to it instead of this forced tiereny. This how we got blessed with the second amendment so government could not do this to us. The fore fathers saw us fighting back by millashas. THOSE WORDS HELD UP FOR 238 YEARS. So this what were in those 1000 pages of Obamas health care for all that our rep did not even get the chance to read from about 2010. Remember? Thank for your article! We all can hold out as long as possible.

Alessio, I am very sorry you are suffering so much and not getting the treatment you need and deserve. Perhaps read my article again and see it for what it is and not what you are making it. It has nothing to do with drug therapy. In what context would it even be appropriate to mention opiates in the article that has nothing to do with opiates? Here is my opinion that you seem to so desperately want. Opiates work. They are being stripped from the very people who need them to survive. It is an outrage. Anyone who needs them should not be screwed by any government, organization or agency that is causing more suffering to those in need. I am in full support of opiates. Does this satisfy you, even though it has nothing to do with my article? You asked that I be “truly honest” and “admit that opioid-based pain meds work.” When did I ever once say they were not necessary and did not work? You have put words in my mouth that have been very unfair, not to mention a few other people. But if this is what is needed to satisfy and clarify whatever was READ INTO my article that has nothing to do with drug therapy, then I hope this helps.

Julie Olson

Alessio Ventura. I read both your comments on this article. I am also in intractable pain and have been through similar withdrawals and ignorance. I think I understand what you are going through. Tom Seaman is not against Opiate therapy. He has been devastated by pain and spasms. He has some good points. What I’m reading is: “…we have to be optimistic about something tangible and realistic based on positive experiences and outcomes, such as a treatment that helps or when others understand our plight (just two of many examples).” My tangible positives can be as simple as, “I took a shower today. Or as complex as going to a new pain Doc that agrees to a higher dose of my Butrans patch.” I don’t know if the new dose will be enough but am hoping for enough relief to go back to physical therapy. I start the new patch July 23. My coping methods include: Opiates, many surgeries, injections, Lyrica, Celebrex, Effexor, recently tylenol, PT, recorded TV shows that distract me, crying, prayer, audiobooks, and the hope that we will turn the tide against the current anti-opiate government trend. I get very depressed at times and ensure that I rest until I can feel my brain begin to rise above the pain. I have to put myself first, which is not my usual choice. Yet, I take pride in my calm demeanor toward others, especially in the medical field. I don’t always achieve that at home. Sometimes, I even hope that I can go back to my career, which is unlikely, due to the progression of my decline with EDS Type 3. That said, with out the opiates, I would be dead and am grateful for all the help over the years.

Julie Olson

Well said, Tom Seaman. Your entire article makes that clear.

Let me be as clear as I can for those of who think I don’t know what pain is like and I am all about some tutti-fruity change your attitude and you’ll be just fine approach. I have lived with pain for decades similar as some of you have described so I know first hand what it is like. I have needed and taken powerful narcotics to prevent taking my life. Along with that, I also had to change my mind and use the power of it to help, even if only a tiny bit, which is ALL I am suggesting here. I am not on any anti-opiate agenda or suggesting “mind over matter.” Along with taking the meds we all need, if we also utilize some of the things I suggested, TOGETHER they can change our experience of pain. Please get off my back until you know my story and really read what I write and not force your agenda on me or presume I have one that would do anything to take away your much needed meds. Nothing I write ever suggests that at all.

Alessio, I never once suggested that “coping strategies”‘ were a replacement for opiates. Do you see medication mentioned anywhere??? Along with TAKING NECESSARY medications, we have to find other coping mechanisms because we need both. End of story for any of you who think I am on an anti-opiate agenda. You couldn’t be more wrong.

Alessio Ventura

By sitting around and discussing “coping strategies” we are basically admitting that we don’t have the kind of pain that warrants opioid treatment.

Someone with true intractable pain cannot “will it” mentally into submission. Why? Well, because pain has two elements (1) the physics of pain and (2) an individual’s ability to be stoic in the face of (1).

The physics: When there is a source of pain in your body, say two pars fractures on L5 of your spine, the nerves carry actual pain signals to the brain. The brain then processes the signals, which in most cases results in the sensation of pain. Opioids change the way your brain interprets the pain signals in such a way that you can still sense the pain, but the way the pain signals are interpreted by the brain changes; i.e., there is a “dampening” of the interpretation of pain, which allows you to live with it.

Stoism: In a small minority of individuals, there is the ability to feel the pain yet somehow “go on”. The pain is not dampened, it is felt in full impact, but the individual somehow pushes themself forward. The issue is, these types of imdividuals are a tiny percentage of the population, yet authorities are now pointing to these individuals to make the argument that opioids are not necessary.

Things have gotten so hysterical and mad. I was in the ER once with 3 broken ribs after an accident, and a police officer with a gunshot wound was rushed in. The doctors and nurses initially were hesitant to give the officer morphine, and he sat there screaming in pain for 15mins as they worked on his injury. Finally, a level-headed doc showed up and said, “F&€k the new hospital policy, I am going to give this man pain relief”, and once the morphine was given, the officer stopped screaming.

Insanity is occurring.

Alessio Ventura

Honesty: I’ve had 25 major surgeries since 2010 because of horrific injuries. Many of the surgeries failed. My body is left with unbearable pain. The recent cuts on daily opioid limits in Florida sent me into horrible withdrawal and the pain became uncontrollable. I missed two weeks of work but used vacation days to prevent going on disability. My pain doc dropped me because I complained about the sudden decreaseand simply asked for a more methodical approach.

Solutions: I have tried meditation, counseling, group sessions, epidurals, steroids, yada yada, basically everything. I try to exercise and do physical therapy and I am exploring the possibility of medical marijuana. I am also seriously considering the black market as a source of pain medicine. I cannot take NSAIDs because I get severe cramping, diarhea, and other gastrointestinal pain (severe).

More honesty: If you are truly honest, then you will admit that opioid-based pain meds work. This is why Green Beret medics carry morphine sticks to the battlefield. They don’t give a downed soldier ibuprofen. If you truly have experienced true intractable pain, then you would not even be mentioning “coping” strategies as an alternative. Again the battlefield analogy, the medic does not ask the downed soldier to meditate. My son is a Green Beret medic and he is REQUIRED to carry narcotics to the battlefield. He has assessed my pain and he does not know how I keep it together. He tells me that without narcotics, I am at high risk for suicide. He has seen soldiers commit suicide because they could not stand the pain left by their injuries (e.g., severe nerve pain even years after an IED event or a gun shot wound).

The REAL solution: Big Government (aka, the “Nanny State”), needs to GET OUT OF OUR HEALTHCARE). My physicians know how to treat me, not beauracrats at the FDA, or failed politicians like Chris Christie who leads the president’s commission on opioids, or attorneys general of various states who sue big pharma. Everyone who suffers from pain MUST SPEAK UP EVERY DAY AND DO IT LOUDLY. If we sit here and keep taking it, then we will continue to suffer.

Root Cause: BY FAR the root cause of the “opioid crisis” is the black market. Government imposed restrictions on the legal market simply push pain patients to the black market and marijuana, a very dangerous combination. But that’s the direction I am going in, and many of us are going. Overdoses and suicides will rise.

Kris Aaron

A positive attitude demands a realistic assessment of our individual situations. Chronic pain patients are up against a culture that has been taught to loathe anyone who relies on opiates for ANY reason, including pain control. I’m looking at YOU, Jeff Sessions, whose advice to pain patients is “…take some aspirin sometimes and tough it out a little. You can get through these things.” It’s frightening to realize that the top law enforcement officer in America is this unforgiveably ignorant, and that he thinks we can “get through” spinal bifida, MS, massive burns, severe back injuries and other painful disabilities.
But J. Beauregard Sessions isn’t alone. Far too often, we are seen as “junkies” and “drug seekers” by medical professionals who really should know better. Our own families may even dismiss our pain and demand we “fight through it” or “tough it out”.
We can’t rely on pious platitudes and simple-minded solutions handed out like cheap Halloween candy. Too often, medical professionals and even family and friends have difficulty accepting that we may not improve beyond current levels. They resist our decision to focus our limited energy and resources on something other than what they’ve been taught is a solution to our pain and disabilities.
And then there’s the blather of those who try to use us for profit. How often have we seen infomercials touting a cure for disorders that scientists and our own physicians tell us cannot be cured? Scammers dearly love sick people, and sick people in pain (who are desperate for relief) are a gold mine for the dishonest and greedy! Guess who gets the shaft?
Remaining positive against the onslaught of this much foollishness is difficult, yet it has great rewards. Razzing salespeople pushing goldmines is fun outlet for frustration. Educating ignorant medical providers and family members can be highly satisfying, although some doctors are insulted when a patient (who can’t possibly know more than they do!) disagrees with their expertise.
Our power is in accepting that this is as good as we get. That we’ll never, physically, be what we were. Positivity is the willingness to move forward from there while demanding others do the same and work with us, not with some comforting fantasy version of our real selves.

Alan Edwards

An uplifting article. Cerebral Palsy can be confused with dystonia. I have the spastic type.

I am honest about my comorbid- multiple disease state. My limp and Macrocephaly are visible. My fluid filled skull will not fit into any hat and barely the adjustable welding helmet I wore when I worked in the severest of pain.

I think daily about my former job- in my dreams I can move easily, walk, run, weld, fabricate steel, and after work play with my dogs
who have since passed away.

Then I awaken. I cannot move. Cannot stand, and end up falling into furniture which I grope to get to the kitchen to prepare toast.
(I need to mow today or may get ticketed by the police.) The mower is much more difficult to push than two years ago.

Things are bleak when diseases team together and intractable pain conditions make fixing meals and brushing teeth impossible without a chair.

I, like many intractable pain patients, became unproductive when our pain management experts slashed our dose and dosage of opioids. .I now suffer advanced cancer pain and beyond without the cancer. My conditions cannot be cured unlike cancer, which is not always fatal or painful.

I used to visit cancer patients and noticed they could move better
than myself and were not in pain depending on the shift doctor.

And yes, I had skin cancer at 30. Had intractable pain before then and was not treated. The cancer was painless.

Now, safe, effective meds are demonized and many patients are homebound because of absolute cruelty and incompetence.

Motivated individuals in extreme pain are now immobile or not ambulatory with their muscles wasting away. Maybe 500,000 to a million.

The voluntary CDC guideline of 2016 targeted all intractable pain patients. The DEA and police are not knocking- they are battering down doors without warrants if you have a legal script.

Two years later, now 2018, the disastrous consequences of the CDC guidlines have destroyed my life and only in my dreams can I function and work and make a decent wage..

The CDC decided, illegally, to listen to the highly motivated, Andrew Kolodny and make him rich and infamous.

Tracy Crocker

As often as possible I think local, not global, in terms of my current life. Two years ago my hopes were sky high that another surgery was going to restore me to my former pain-free, active self. It did not and I crashed badly. My situation worsened and I lost my vocation which plummeted back into despair and depression. I have come to terms of agreement with myself in that I focus narrow on today, and future anticipated joy, however simple or trivial that event may be. I am not Pollyanna here. I have potential surgery looming, health insursance issues and other negatives.
I just try not thinking of the big everything: me before and after. Pain and restrictions, and I avoid problem stacking, where the everything conjoins with the doctor’s appointment or any of those hurdles.
I really appreciate your writings here and can’t wait to order your book.

Heather

I would love to see more content like this or from this writer! Way to keep it real!

I made some big realizations that I wish I would have understood early on after my diagnosis. I learned that my emotions are valid (and if I ignore them instead of acknowledging and exploring them, they’re just pressure on a dam that is likely to break), I can’t lie to myself (I know when a situation sucks, and I just try to figure out how to move forward), my life has changed. For real, my life will never be what it was before. I’m doing the best with what I’ve got.

I think one of the worst things about chronic pain or chronic fatigue is that it’s isolating. I miss a sense of feeling a deep, real friendship. I am an honest person who is having to learn the hard way that people can’t cope with my life as it is, as it truly is. They want the spit-shined version, the pretty, skippy happy unicorn fuzzy puppy version. The few people who have treaded lightly into my true reality, I fear of losing. They saw the tip of the iceberg, and seemed OK with it. I’ve had people I trusted tell me things like “You’re too sick for me. It would be so much better for you if you could try to stay positive” and “you don’t live up to my expectations” (because I couldn’t walk uphill carrying a casserole dish in a part of town I have only been to once on a 90+ degree day). When people think they’re doing you a favor, it hurts… and those words played over and over in my mind, and sometimes they still whisper. That pain is so intense.

And yes, I know they weren’t my true friends if they did that to me. I know. But I let them in. I trusted them.

The medical system offers more abuse. What if they treated cancer patients like they treat us? Well, they kind of have started to. I’ve heard of cancer patients not getting pain management. There are programs for people who are diabetic, who have cancer… they guide you about how to live with a LIFE-CHANGING health issue. Chronic pain patients really only have each other for support. Some of us don’t even have our families for support. It’s really heart-breaking. I’ve got my mom… My mom is living with pain. I may be seeing my future in what she’s living with now. I don’t know. She’s had two spine surgeries, will have one more, possibly two more and has arthritis all through her. My arthritis is in most joints of my body. It started in my early 20’s and today is my 39th birthday.

I’m doing OK. I don’t see any unicorns though.

Steven

I would agree except one thing our doctors have been told to reduce our medicine to 90mme no mater what. For most of us that means death and soon. How is that for honesty? I will be in hraven by Christmas. Home for the holidays. Instead of 30 years I get gyped of I have to say hello Jesus. Thats not so bad. You cdc, fda, dea can just go suck eggs.