Finding Hope in Possibilities

By Mia Maysack, PNN Columnist

My journey in advocacy began and revolved around healthcare reform. I’ve since stepped back from that pursuit, the main reason being that the medical-industrial complex isn’t the only system in need of dismantling. It didn’t make sense for me to focus solely on one aspect, but rather all of them, and the ways in which they are polluting the same corrupted river.

My efforts started out fixated on neurological disorders, because that’s what I’ve endured for most of my life. But I believe each diagnosis matters equally, and whether I’m able to personally relate to them has always been irrelevant to me. I still care about everybody’s dignity and I believe most patients appreciate my efforts.  

I’ve met some of my absolute favorite individuals through this work, but a large percentage remain stuck in their grief and mourning or wrapped up in their pain identity. I get that because I’ve been there.

Despite my patience and understanding, that’s often not what I receive in return.  I’m thankful for the inner work I’ve done, which provides strength for me to withstand those who so boldly mistreat me. I also understand that it is more about them and their inner climate than me. That doesn’t mean I am better than anyone, but that I operate from the bigger picture.

Despite having every reason a person could think of to give up, I have not. What I offer the pain community is a new way of thinking: hope in the possibility of brighter days ahead. 

I’ll never understand why some choose to remain miserable when they don’t have to. It doesn’t make sense to me how people can sit and complain about not being well enough to call a legislator or advocate for themselves, but devote so much energy and time into diminishing those of us who try to turn our misfortune into something that all are able to benefit from.

What hurts more than the attempted character assassination is the fact that we continue losing so many to suicide, not just in the pain community but the world around us. I reflect on how the cruelty I’ve endured could be the last thing someone encounters before they choose to just finally throw in the towel. It’s infuriating because it means we’re essentially playing a role in murder.

I am sorry if your life experiences have led you to feel as though the only thing you’re able to do is to attempt to hurt other people. I know that those frustrations are not to be taken personally, but stem from the doctors, trial and error treatments, and the broken society that has failed us. 

You should know that I’m strong enough to lovingly receive the hate, but not everybody else is. Please think twice next time you are compelled to try ripping someone else into shreds. Ask yourself, does it really make you feel any better?  

When I say “get well soon” -- as I did in my last column -- I wholeheartedly meant it.  I’m living proof that it’s possible, and no one gets to belittle or reduce that in any way. If and when you’re ready to come out of the darkness, I’ll still be here.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

How TMS Helped Me Feel Better Physically and Mentally

By Madora Pennington, PNN Columnist

Chronic pain is often accompanied by depression. Many clinicians used to think that pain was caused by psychological distress, so they offered patients antidepressants with the attitude that their suffering was “all in their head.”

But now it is better understood that chronic pain can cause depression. Both conditions have a similar pathology and change the brain in similar ways. That is why treatments that work on depression (like antidepressants) may reduce the brain’s sensitivity to pain.

“Regardless of the cause of the pain, anxiety and depression increase the sensation of pain. Pain increases depression and anxiety, creating a vicious cycle. Breaking that cycle can help decrease pain,” says integrative physician and pain doctor Dr. Linda Bluestein.

I have Ehlers-Danlos Syndrome (EDS). Debilitating pain has been my companion since I was 14 years old. My body makes collagen that is not structurally sound. Because I am “loosely glued together,” I get injured easily because my joints are unstable and my body has a poor sense of where it actually is in relation to itself and the outside world. My thin and stretchy connective tissue sends pain signals to my brain, even when I am not injured.

It is probably not realistic for someone with Ehlers-Danlos to expect to have a life without pain, so I welcome medical treatments that might lessen my pain, even if they don’t eliminate it. My goal is to have pain that does not incapacitate me or ruin my life by taking all my attention. Thankfully, there are modalities that do this.

MADORA GETTING TREATMENT AT UCLA’S tms CLINIC

The last one I tried was transcranial magnetic stimulation (TMS), which stimulates the brain through a magnetic pulse which activates nerve cells and brain regions to improve mood.

TMS treatments are painless and entirely passive. The patient just sits there and lets the machine do the work. A magnetic stimulator rests against the head and pulses, which feels like tapping or gentle scratching.

TMS has been around for almost 40 years. The first TMS device was created in 1985 and the FDA approved it for major depression in 2008. Since then, its use has been expanded to include migraine, obsessive compulsive disorder, and smoking cessation.

While other medical procedures work on an injured body part, TMS targets the brain, where pain is processed. This helps the brain shift away from perceiving pain signals that are excessive and have become chronic.

“Many people are surprised to learn that stimulating the brain can help alleviate pain that is felt in an arm, leg or some other part of the body. We explain to patients that because pain is perceived in the brain, it is possible to reduce or sometimes even eliminate it by stimulating specific brain regions,” says Andrew Leucther, MD, a psychiatrist who heads UCLA’s TMS clinic, where I was treated. In addition to depression, the clinic also treats fibromyalgia, neuropathy, nerve injury, and many other causes of pain.

“Most patients are much less bothered by pain after treatment and report that they are functioning better in their work and personal lives,” Leucther told me.

Many insurers cover TMS for depression, but it is not generally covered for pain alone — although many doctors will add protocols for pain when treating depression. This is how I got my 36 sessions of TMS treatment, the usual number that insurance will cover and is thought to be effective.

Repetitive TMS stimulation to the primary motor cortex of the brain has robust support in published studies for the treatment of pain. It seems to work particularly well for migraines, peripheral neuropathic pain and fibromyalgia. Like all treatments, it may not work for everyone.

TMS practitioners recommend four or five sessions per week, gradually tapering off toward the end. My body is so sensitive, about three per week was all I could tolerate comfortably. The appointments lasted a brief 10 -15 minutes. A downside of the TMS machine is that it puts pressure against the head, which could be too much for Ehlers-Danlos patients who have uncontrolled head and neck instability.

TMS gave me relief in different ways than other methods have.  One of the first things I noticed was less negativity and rumination. It was like getting a nagging, negative person out of the room -- or rather, my head. I felt less heartbroken over the major losses of my life, such as having spent so much of it totally disabled.

I also noticed a big difference in my PTSD triggers. I found myself shrugging off situations that normally would put me in a very uncomfortable, perturbed state. Keep in mind, I was getting TMS applied to various points on my scalp for pain, depression and anxiety.

Since having TMS, I notice that my body is less sensitive to touch. From spa treatments to medical procedures, it does not hurt as much to be poked at or pressed on. The extra comfort TMS had given me, both mentally and physically, is a lot for someone with medical problems like mine that are so difficult to treat.

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

A Pained Life: Me and My Shadow

By Carol Levy, PNN Columnist

Pain shadows a lot of life's experiences. If I'm pregnant, at some point I'll think about childbirth – and the horrendous pain of labor. But to torture a musical metaphor, at the end of the shadow, the sun will come out tomorrow. At the end of labor, the pain stops, and the happiness of a newborn baby is the result.

If I'm going to have surgery, I may think about the pain that comes after surgery and during recuperation. But I can also be buoyed by the knowledge that at the end of my recovery, the pain of what brought me to a surgeon in the first place and the pain of getting over the operation will be gone.

When I have an appointment with a dentist, just thinking about the appointment is painful for me. The visit means triggering my trigeminal neuralgia facial pain as soon as they ask me to “open wide.”

There will be no sun, just shadows. The appointment will end, but the pain that was triggered will last for hours. I can’t run away from it.

Another dental appointment will have to be made, hopefully later rather than sooner, and I will be forced to invite the pain back again.

Is the pain awful when it is triggered or is it the fear of it being triggered that sets it off? Some doctors will say it is psychological and that fear is causing the pain, not the actual actions that trigger it.

Is this true? Sometimes I like to think it is. After all, if it is fear, then I can try and work on it in my mind, to release myself from its prison. If it is the pain, and when or how they will set it off, I cannot talk myself out of it.

There is no way to negate the reality of the pain or its triggers. The sun does not come out for us and the shadow of fear is not a metaphor. Pain is our reality. The fear of setting it off can be as dark as the pain itself.

That’s something that we and our doctors, colleagues, family and friends need to understand and accept as the truth of our life experience. And the reason we are often unable to participate in life.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

Are You Suffering from Toxic Stress?

By Ann Marie Gaudon, PNN Columnist

There is no such thing as life without stress. It’s both a physiological and psychological response to a real threat or a perceived one. Stress tends to resolve itself naturally and in a timely way as the situation resolves, but “toxic stress” is different.

Frequent chronic stress, in the absence of adequate support, has harmful and potentially lasting effects on a person’s physical and mental health. It can affect anyone at any age, and no one is immune.

You are at risk for toxic stress when the stress is persistent and severe. You may have multiple stress factors and the body will react to them. One reaction will be that the body’s fight-or-flight, faint-or-freeze response is activated too often or for too long. This results in the release of stress hormones, one of which is cortisol. Long-term heightened levels of cortisol can become dysfunctional, inducing widespread inflammation and pain.

There is a very real biological link between stress, anxiety and pain. Toxic stress makes you more at risk for many types of chronic illness and pain, a dampened immune system, infections, mental health issues, poor emotional regulation skills, and even substance abuse. You can become sick and stay sick.

Toxic stress will also make you more vulnerable to chronic anxiety, which can include panic attacks. You may become hypersensitive to threat and to pain severity. Your behaviour will also likely change, which can mean trouble for relationships. In short, toxic stress will invade every thread of the fabric of your life.

Types of Stress

Center on the developing child, harvard university

Stress Buffers

Toxic stress can’t always be avoided – the loss of a beloved one, a nasty divorce, conflict in the home, chronic depression, feelings of betrayal and other life changes are sometimes inevitable.

However, a relationship with an adult who is loving, responsive and stable can help to buffer against the effects of stress and stop it from turning toxic. Other buffers include high levels of social support, consistent nurturing, and confidence in your problem-solving skills are just a few in an umbrella of many.

There are strategies you can do on your own to help buffer yourself against the consequences of toxic stress. Crucially, it is important to focus on what you can control, not what you have no control over. Toxic stress may include factors that are actually beyond your control, leaving you more distressed and overwhelmed, so it’s very important to become aware of the differences.

Write a list of what you can and cannot control. Take the reins on what you are able to, even if it’s as routine as what you’ll eat for dinner each day. Spend your time and energy on things that can improve your situation and can get a handle on. Remember, when we rail against that which we cannot control, that is when our suffering soars.

Healthy Living

Focus on a healthy lifestyle. Toxic stress can easily slide into unhealthy habits such as smoking, too much alcohol, overeating, overworking and the like. You may get temporary relief from them, but in the long-term these poor coping mechanisms will serve to worsen your stress. Eat well, exercise, get outside into nature, and try as best you can to get good sleep while practicing sleep hygiene.

Some people have a tendency to isolate themselves when stressed, yet one of the most protective buffers against toxic stress is support from people who care about you. Never underestimate the power of touch, including deliberate and welcome hugs. Reach out, engage with others, and make plans with others who are close to you. You want to be with adults who are soothing, safe and secure for you.

Find a relaxation technique that helps you lower your stress level. I’m a little different than some, because vigorous exercise is my happy place. Heart-pumping, blood-flowing, rushes of endorphins take my physical pain down and make me feel relaxed.

Alternatively, you might benefit from stillness with mindfulness practice, journalling, yoga or Tai Chi, body scans or progressive muscle relaxation techniques. Find your happy place and go there as often as you are able.

A very wise colleague of mine told me that we need three things to be happy: someone to love, a purpose, and something to look forward to. Go ahead and set goals, and plan for the future.

Toxic stress can have the sufferer believing that things will never improve, which leads to hopelessness and despair. Making plans for the future will give you some direction and purpose, as well as something to look forward to. When a good experience happens, optimism can drop by for a visit to remind you that life won’t always be so challenging.

As always, if you’re really struggling, reach out to a trained professional. We all need help at times in our lives, and one of those times might be when you’re dealing with toxic stress.  Your professional therapist will support you and help you with tools and strategies so that you can in turn support yourself.

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website. 

Staying Active Is Vital for People with Pain

By Joanne Dickson, Edith Cowan University

Chronic pain affects around one in five people and is considered “chronic” when it persists beyond the expected healing time, typically three months or longer.

Along with physical problems, chronic pain can impact a person’s daily activities, employment, lifestyle and mental health.

Doing things you love and having goals are fundamental for wellbeing because they give meaning and purpose. But pain can make doing the activities you enjoy psychologically, physically and/or emotionally very challenging.

Our new research shows the way a person with chronic pain responds to not being able to participate in the activities or goals they value can impact their mental wellbeing – even more so than their pain levels.

We surveyed more than 300 people living chronic pain (that wasn’t related to cancer) about their mental wellbeing, “pain intensity” and how much pain interfered with the everyday pursuits and activities that mattered to them. We differentiated chronic pain from cancer pain due to the differing prognoses and treatments available, and the unique psychological and social factors associated with cancer pain, such as concern about death.

We found pain that disrupted daily life activities, rather than the intensity of the pain, posed the biggest threat to a person’s mental wellbeing.

When pain interferes with a person’s engagement in meaningful daily activities, it causes distress and decreases wellbeing.

The research suggests it’s possible for people to find ways to maintain their mental wellbeing, even when their pain intensity is high, so long as they’re able to maintain aspects of life that are important to them, such as relationships and work.

Find Other Ways to Do Things

We found personal motivational traits – specifically, goal flexibility (adjusting goals in response to changing circumstances and setbacks) and tenacity (persistently striving to achieve a desired goal under difficult circumstances) – were associated with increases in mental wellbeing for people living with chronic pain.

Although flexibility and persistence were both associated with increased mental wellbeing, the capacity to flexibly adjust to setbacks or obstacles had the most significant positive effect in maintaining one’s mental wellbeing.

Flexibility appears to act as a protective factor against the impacts of pain interference on mental wellbeing, to a greater extent than personal tenacity or persistence.

There is often more than one way to modify or adapt an activity when difficulties arise. A walk on the beach with friends, for instance, may be adjusted to meeting at the beach for coffee to fulfil the same goal or value: social connectedness.

Focus on What You Can Do, Not What You Can’t

Psychological processes that can help people to live well in the face of long-term pain have long been overlooked. Research has traditionally focused on unhelpful thought processes that perpetuate or exacerbate mental distress. For example, pain catastrophising and repeated negative self-criticism.

Pain management and mental health are multi-faceted. Previous research has shown pain management should take into account physical factors (age, sleep, injury, disease) and social factors (employment, social support, economic factors).

Our findings add to this body of knowledge. For those living with pain, reappraising and adjusting meaningful life activities and goals, when needed, in response to setbacks or life challenges can help maintain mental wellbeing.

These findings can inform the development of psychological supports for people with chronic pain. In turn, these supports could identify internal strengths, resources, positive coping strategies, self-efficacy, hope and wellbeing – and promote psychological strengths rather than deficits.

Joanne Dickson, PhD, is a Professor of Psychology & Mental Health at Edith Cowan University in Australia. Joanne’s main research interests are in the areas of goal-motivation, prospective cognition and emotion-regulation processes in mental health and well-being. She collaborates with national and international researchers in Australia, the UK and USA.  

This article originally appeared in The Conversation and is republished with permission.

A Get Well Message to the Pain Community

By Mia Maysack, PNN Columnist

One of the things that has distanced me from hands-on participation in the pain community is the persistent negativity. I’m not the only advocate that has picked up on this, nor alone in feeling the need to step away as a result.

Don’t get me wrong. As a former healthcare provider, I understand and am sensitive to the fact that people aren’t chipper on their hardest days or when they’re experiencing a tremendous amount of discomfort. And being a patient myself, there have been and will continue to be moments where I drop the ball in regards to being “positive.” My vision is literally and figuratively blurred on those days -- to the point where it’s not easy to see any bright side or silver lining.

But each attempt I make to provide meaningful commentary on what has assisted, changed or even saved my life is met with objections. One of the most infamous lines goes something like: “Some of us have incurable conditions!”

It’s as if my post bacterial-meningitis intractable mega-migraines, irreparable cellular nerve damage, evolving arthritis, immobilizing fibromyalgia, and the fact I’ve lived this way for two decades and counting doesn’t have any merit or meaning.

It’s quite frustrating to devote so much of your experience, skills and compassion to people who condemn you for attempting to transform your suffering – while they contribute to that very suffering. The whole “misery loves company” thing is a bit played out with me. I believe a much more productive use of energy is to get to the root of our misery, as opposed to clinging to it and passing it on.

Any time I offer up alternative pain modalities that have proven helpful for me, along with millions of others for thousands of years, while always treading lightly on the eggshells of disclaimers about everything not being for everyone, nothing can completely fix our problems, it’s a process of trial and error, etc. –  I’m torn down by the very same people.

How is this supposed to elevate anyone or make anything better?

I’ve been mocked, ridiculed, silenced and even threatened when mentioning things such as mindfulness, meditation and neuroplasticity. But companies have invested in and now offer all of those therapies.

This is in part what led me to step away from patient support groups, because most don’t desire actual support, but seek more space to complain. I wholeheartedly understand and believe it is of utmost importance for our grievances to somehow exist outside of ourselves, but I’ve found that support can only get us so far.  It then becomes more about self-help, which is something that most people have a difficult time realizing or pursuing, especially when illness or pain are major obstacles blocking the way.

Sometimes, those of us who have risen from the depths of our own versions of hell are judged and labeled by remarks that we couldn’t possibly be sick. That somehow, we’re more privileged than the next patient or had opportunities that others don’t have and cannot get.

In actuality,  we are revolutionaries who saw that treatments were not working and made a conscious decision to devote our lives to assisting others through their hardships. Not because anything is gained or money made, but because it is the right thing to do. We were once consumed by the fire as well, but now venture out with buckets of water for the rest of you.

It is mostly thankless, often torn down, and difficult to take on the weight of what can feel like hatred, all the while attempting to balance and manage the ailments that already threaten us. Irony is found in the fact that so much of the condemning originates from people who do the absolute least for this community. 

The time has come to understand this conduct as a sickness in itself, and that it causes a negative ripple effect that limits us all from the ability to move forward.

I’m thrilled to see articles about things such as how healing is just as important as pain relief, or how childhood experiences that seem to have little to do with our current conditions can still directly impact how our bodies and minds feel.  And it’s always encouraging to come across a list of low-to-no side effect modalities to at least consider, if not try.

This doesn’t mean belittling anybody's experience. Release the illusion of stories you’ve always told to yourself or were told to you. Make room for a new chapter and fight for your lives, not against those who want you to thrive. And get well soon.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

How to Live Longer and Healthier with Chronic Illness

By Barby Ingle, PNN Columnist

Have you ever wondered what living with chronic illness or a rare disease does to your lifespan? I have.

My primary care doctor recently conducted a seminar about living longer and healthier. He gave the attendees a great resource: a “health span” guide that outlines five ways to enhance your day-to-day life and live longer. The guide got me thinking. As a person with rare diseases and chronic pain, can they help me achieve my goal of living to 100 years old? 

Step 1 of the guide is to eat a Mediterranean-style diet. Studies show that people who eat a diet rich in fruits, vegetables, fish, whole grains, nuts and legumes live longer and have fewer instances of type 2 diabetes, obesity, heart disease and cancer.

I believe in individualized care for my health. As I have talked about in the past, I did microbiome testing to assess my gut health, using an at-home test made by a company called Viome. The results I received revealed that many of the fruits, veggies and nuts that I loved were not suitable for me because of my genetics. My DNA would rather have me eat a rack of lamb than a tomato!

I think getting that kind of detailed, personalized health information is better than following a one-size-fits-all diet.

Step 2 of the health span guide is to exercise often. It states that people who exercise between 2.6 and 4.5 hours per week have a 40% lower risk of dying. 

I have found that exercise means different things to different people. When I was younger, I was an athlete. Today, I cannot imagine doing a simple jumping jack. Nevertheless, moving as best we can each day, without going into a pain flare, sounds reasonable. That is what I strive to achieve.

I try to do what I can physically and not get too down on myself for the fatigue, pain and times when my body is dystonic. I hope that will be enough “exercise” to reduce the risk of other chronic illnesses, such as diabetes or dementia. I know people who have diabetes who were able to exercise, change their eating habits, and live longer. But my father, ten years after being diagnosed, still passed away early. 

Step 3 of the guide is to manage your stress and mental health. Those of us with rare and chronic conditions often have increased anxiety. Who wouldn’t be depressed learning how to live with a new normal? Chronic stress reduces life span and ages us faster from the chemicals and bodily changes that occur.

Step 4 of the guide is to make good sleep a habit, which is not easy when you have chronic pain. But a night with 7 or 8 hours of restful sleep can help reduce pain levels and lead to a better, more productive tomorrow.

When our sleep is disturbed long-term, it can affect our mood, organ function and contribute to an early death. I remember back in 2009, before I began infusion therapy, I tried many recommendations for better sleep, such as a warm drink before bedtime, having a set time to go to bed and wake up, and cutting out caffeine. After the infusions, when my pain was better managed, I realized just how bad my sleeping was and how much I needed 8 hours of sleep. Here are some tips for better sleep from the CDC.  

Step 5 of the guide is to build strong social circles. Having at least six different social connections each month has been associated with better health. I have found that people who are not chronically ill have difficulty understanding why we don't get better. They make comments like, "Are you still sick?" and "You’re still not feeling better yet?”

It is sad that it is harder for us to make and keep friends who are healthy and happy. A network of friends is essential for many reasons. This New York Times article on “How to Be a Better Friend” has some tips on how to improve our connections with others. 

I want to live longer and healthier, and to work towards it with good connections, preventative care and palliative care. We live in a great time when medical care and genetic testing are advancing, helping us live healthier. Being in the best shape possible to live past our potential expiration dates will help us enjoy our limited time here on earth. It all goes back to being the best you, so that you can fulfill your earthly purpose while participating in society. 

Living longer comes from individualized care and making the most of each aspect of your life. Changing how you live, respond, and act today can make your life longer and more meaningful.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts. You can follow her at www.barbyingle.com 

My Story: Make Your Doctors Accountable

By Crystal Moody, Guest Columnist

From a full-time medical education coordinator to full-time chronic pain patient, I am now trying to maneuver my way through the world from the other side of the operating table. And it is a completely different ballgame. Gaslighting, patient-blaming and condescension are daily players in this game.

I live with chronic back and neck problems, some caused by medical errors, and have undergone multiple spinal surgeries and procedures. I was legally labeled as “physically disabled” in 2018 by Social Security, but it took three years in California and I had to hire an attorney to make that happen. Every player in this game gets paid, except the patient.

It was the beginning of 2016 when I realized I was never going to be able to work in medicine in my former capacity again. However, even if my body was broken, my mind was not. I re-enrolled in college, wanting to keep my mind fresh in between surgeries.

In 2018, I completed my BA in Organizational Leadership at Azusa Pacific University (online and from bed). I then completed my Masters in Public Health from Los Angeles Pacific University in 2021. I am now pursuing a doctorate in Social Work.

I hope that my work and life experiences will allow me to help others, in the same ways that I have needed help. I want to help people with chronic, debilitating and life-threatening illnesses.

CRYSTAL MOODY

In the beginning of my illnesses, I did not understand why I could not just let things go. As time passed, I realized it was because I was witnessing doctors, specialists and clinicians who had no clue what they were doing. Even worse, I was beginning to realize that every doctor I consulted with seemed to count on the fact that I would not have any medical knowledge. They tried to placate or downplay my concerns, and send me on my way.

Initially, I thought it was because of my own ignorance as a patient. But in appointment after appointment, the truth became blatantly clear. If I had had no educational, personal, and/or professional experiences in medicine, they could have fooled me in every visit, every time.

My goal now is to train our doctors and specialists to be more patient, kind, empathic and ethical, by teaching patients how to be investigators of their own health information. Patients need to learn how to advocate for their own health during an era of “sloppy medicine.”

One such lesson is to teach patients where and how to hold their doctors and clinicians accountable. Never check hospital or medical practice reviews of your doctor. Those reviews are biased. As an ex-hospital employee, I can tell you who gets those reviews. Patients whose outcomes are successful and more likely to give positive reviews are noted by hospital employees. They send those patients the evaluation forms.

In the hospital where I worked, many evaluation forms were completed by other hospital employees. Some employees were even patients of the doctors they work with. How is that not a conflict of interest?

Always check for independent reviews through online sites such as HealthGrades. They are much better resources for patients with complex medical histories. You need to know who you are going to be working with, and it is immensely helpful to see other patients’ unbiased reviews of doctors. No one is a better professional in being and knowing you than YOU.

It should no longer be a one-way-street, with doctors doing all the talking during appointments. If patients know the right questions to ask, they will be better prepared to challenge the doctor for answers and direction. Patients deserve to get the most out of every visit. Additionally, I encourage you to observe if the doctor has a partner or assistant join them in your visits.

You should never go to an appointment alone, if you do not want to. If someone can’t physically be there, you can also make a FaceTime call to have a second set of “eyes and ears” at your appointments. The clinicians document your visits and sometimes bring reinforcements. You should, as well. Your input is valuable, and you should be documenting as much or more than your doctor.

The sad fact is that you are worth more to a doctor when you are sick than when you are well. They send you back and forth between their colleagues and specialists. It is time to cancel the hamster wheel of medicine and rebuild it through decency and transparency, with truly informed consent by both patients and doctors.

A poor doctor should not have the same status and pay as a good doctor, but they often are. What keeps a doctor honest if they earn the same despite their poor patient outcomes? Ultimately, for doctors to perform better, patients must be willing to hold them accountable when necessary.

Disabled patients should know there is no guilt or shame in disability, and that disability does not equal stupidity. There is opportunity for positivity in every negative situation.

Crystal Moody lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

My Story: 30 Years of Pain

By Rochelle Odell

Sad to say, but I am entering my 30th year battling the monster called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome (CRPS). After three decades, I just call it by both names: RSD/CRPS

It was bad enough when the disease was triggered when I was 46. I had made a career change from aerospace to nursing, and moved out of California to take a new job not too far above minimum wage as a Critical Care Tech. After being a volunteer EMT, it was my dream to become an RN or trauma nurse.  So, I trekked to Georgia to start reaching for my dream.

My left heel was most unhappy with all the walking. I had a lifetime award for medical due to a work comp knee injury, which caused an abnormal gait and the heel pain.

After six months, plus physical therapy, I had a knee arthroscopy. The surgeon was also supposed to remove a painful heel spur, but didn’t. Instead, he accidentally severed a nerve in my left heel, immediately triggering what was then called RSD.

In less than five years, the monster spread to all four of my extremities. I had every therapy, blocks, multiple implants and other procedures, but all ultimately failed.

Back to California I trekked with unexplained, unimaginable pain. I had no job, no insurance except for work comp, and was alone -- questioning my sanity about the career change.

ROCHELLE ODELL

I was eventually placed on a medication only regimen, and for over 16 years was on high dose opioids, along with high dose Diazepam, high dose Lidocaine, and three other meds. Funny thing was, I did very well with them.

Was my pain gone? With RDS/CRPS? No, but it was controlled to the point where I could function. I drove, took good care of my small home, and remained active despite the severity of my disease.

Fast forward to 2016. Those of us suffering from unrelenting intractable pain remember all too well what began that year. Thank you, CDC. All my meds stopped suddenly, but I had no idea why until 2017. A new life of hell began. I didn’t leave the house and was mostly bedbound, only getting up to let my very worried little dog outside, or for a trip to the bathroom or kitchen. Showers? What was that? Just going to the bathroom completely drained me. Thank heaven for adult wash cloths.

I discovered online shopping, thankfully, so we survived. I had no family where I now lived and felt frightened and frustrated. It was like my world had ended. I no longer trusted any doctor or nurse, because most were condescending and uncaring, which really saddened me. I gave up an excellent career in aerospace to go into a profession to care for others, nursing. What happened to those people?

In 2018, I returned to pain management and was placed initially on low dose Norco.  By then my pain was out of control and I knew this would be a new era when it came to pain management. I also knew I was very lucky to have found a provider who would prescribe any opioid. My dose was slowly titrated up, although it was still only a third of what it used to be. I also became a palliative care patient.

I have learned to make my medications work for me, using less on tolerable days and more on bad days, ever cautious about running out early.  I learned, or rather adapted, to finding new ways to do my yard and housework. The last five years I decorated for Christmas like I never used to and began inviting friends over for holiday meals. I became active in my homeowner’s association and was elected vice president. It’s a large senior community with over 1,000 homes.

Have I paid the price for my new endeavors? You bet, big time, for several days at a time. But I did not give in to the pain.

I had a wonderful holiday thanks to sweet friends, and had two pain friends over on New Year’s Day for black eyed peas. One brought her husband. The other recently lost her husband, so she brought her son.

What’s the point of my 30-year story? To share that life does not have to end due to unrelenting pain. Yes, we have to fight far too many battles and no one should be suffering like we do. I decided not to let my nightmare consume me and refused to let it destroy what life I have left.

I am now 76. At this moment my left foot and leg are throbbing, and my whole spine feels electrified. Pain management ordered a full spine MRI to rule out arachnoiditis and the myriad of other problems already diagnosed. My left hand and arm feel like they’re on fire, but I know that when I finish this column, it’ll be time for my meds and some relief.

I want all my pain friends to stand up to your pain even when you feel you are at your wits end. Resurrect the fighter in you. Call a friend or have one over for tea or hot chocolate with this cold winter. You can do it! Tell your pain where to go, please, for you!

Rochelle Odell lives in California.

Do you have a “My Story” to share? Pain News Network invites other readers to share their experiences about living with pain and treating it.

Send your stories to editor@painnewsnetwork.org.

Learning How to Cope With Childhood Trauma

By Cynthia Toussaint, PNN Columnist

My world became unreal and terrifying when I was 18. Literally, everything looked, sounded and felt distorted. While I’ve long known this experience is called “derealization,” I only recently discovered it’s a form of dissociative coping that sprung from childhood trauma – trauma that also seeded a lifetime of chronic pain, including my Complex Regional Pain Syndrome.

During my trauma-release work last year, I learned that dissociation protects us from experiencing what is too overwhelming: perceived annihilation, if you will. My childhood years were so traumatizing, I now see that my mind made everything unreal to escape the horror of my world, which included domestic violence, mental illness, addiction and suicide.

There are five different forms of dissociation (depersonalization, derealization, amnesia, identity confusion and identity alteration), and my trauma therapist explained that, unfortunately, derealization is the least common variety, with scant research behind it. Also, it’s near-impossible to manage.

When my reality imploded a lifetime ago, my derealization felt anything but protective. It invaded me so dark and destructively, I feared I’d gone insane and that my next stop was an asylum.

It all started by eating too many pot-filled brownies while I was on an anxiety-ridden outing with my abusive brother and his posse. To get home, I was named designated driver because I’d partaken less than the others. I was terrified because I felt like I was on a bad trip. Also, I’m awful with directions and knew my brother would mercilessly belittle me for my wrong turns.               

Still, I took the wheel. Soon, out of nowhere, or so it seemed, I blew through a stoplight and missed a speeding Mack truck by a hair, my spatial abilities incapacitated. There must have been an angel on my shoulder that day as we all should have died. In a way, I did.

After being relieved of my driving duties, the people around me, the cars outside, even my own body became terrifyingly unreal and distorted, like being in a funhouse hall of mirrors. I also had such severe paranoia that when my brother’s girlfriend took a turnoff I wasn’t familiar with, I was certain she was driving me to hell. And when I say hell, I mean fire, brimstone and the guy with the pitchfork and tail.  

The horror didn’t let up for the next couple of weeks as I felt I was looking through a veil of fog. Perhaps the freakiest part was that everyone acted as though they weren’t on the same drug trip. I felt alone, always holding the tears and screams inside. I tried to play along with everyone else’s normal, reminding myself that if I let out my terror, they’d likely have me committed.

Panic Attack

Soon after, when my family took a long-anticipated trip to New York City, I lost my marbles. It was too much of a load of sensory input that I was unable to process in my vulnerable state. One night in our hotel room, I released my panic with a gut-wrenching scream that didn’t let up for hours. Horrified, my family got me to an ER, and I was diagnosed with an anxiety attack. I only wish.

After that, my derealization became my new normal. Good god, it didn’t let up for an entire year. During college and my first professional dancing job, I learned to cope by using distraction and reminding myself that the bad times were temporary, that some days were better than others.

After developing CRPS and seeing my life and dreams crumble a few years later, I had to give in to the spreading, fiery pain by moving back into my mother’s home. Anxiety, fear and despondency took over and my derealization roared back worse than ever. I was debilitated to the point that I could only lie on a bed and stare at cracks in the wall. It was a single crack that looked real to me.

Out of desperation, I saw a compassionate psychiatrist who mercifully blew open my world. I was stunned as he asked questions that lead me to understand that, not only did he believe me to be sane, he actually knew what plagued me. Stunned, I asked him if my symptoms were familiar.

“Let’s just say that if I had a nickel for every patient that came to me with what you’ve got, I could buy something expensive,” he told me. With that, a ton of weight lifted from my shoulders.

This healer put me on a benzodiazepine, Klonopin, and gave me a book that detailed my dissociative disorder. I was no longer alone and, at last, knew I was sane. Regarding the Klonopin, the good doctor added, “I wouldn’t be surprised if your pain lets up as well.” 

Within a few days, my derealization miraculously eased by about 80% and, as a bonus, I went into my first CRPS remission. The word “hope” re-entered my vocabulary, and I was again among the living.           

44 years after eating that brownie, I still wrangle with derealization. If stressed or triggered, the fog closes in, but it no longer runs me. I’m fortunate the clonazepam (generic for Klonopin) is still effective, as I have a brother who isn’t as lucky. He’s suffered most of his life with derealization, and nothing has ever provided respite.

Trauma brings on so much bad in so many ways, and our minds and bodies go to astounding extremes to persevere. Since my trauma-release work, I’ve arrived at surprising new understandings and feelings. I’ve come to a place of acceptance, even a bit of gratitude, for my derealization. It’s gifted a lifetime of protection by shielding me from what I likely wouldn’t have survived. It was simply trying to do right by me. Still is.              

For real.           

Cynthia Toussaint is the founder and spokesperson at For Grace, a non-profit dedicated to bettering the lives of women in pain. She has lived with Complex Regional Pain Syndrome (CRPS) and 19 co-morbidities for four decades, and has been battling cancer since 2020. Cynthia is the author of “Battle for Grace: A Memoir of Pain, Redemption and Impossible Love.”

A Pained Life: The Doctor Complex

By Carol Levy, PNN Columnist

The doctor walked into the exam room. He put out his hand and said, “I'm John Smith.”

For some reason, I did something I had never done before and asked, “Do you prefer John or Dr. Smith?”

“Uh, either is okay,” he said, looking a bit befuddled.  

So, I went with “John.” He didn't look happy with my choice, but he accepted it.

Flash forward to another exam room. Another doctor walks in and extends his hand to introduce himself. “I'm George Midas,” he says.

“Do you prefer George or Dr. Midas?” I ask.

He blew out his chest, like a gorilla in the mist. “I went to medical school and I deserve the title of doctor. You may call me Dr. Midas,” he said.

I returned to the first doctor. I never went back to the second one.

I read in medical blogs about how concerned many doctors are because they feel their elite status in the public eye is diminishing. “Doctor” or “physician” is what they are, so that is what they want to be called. Even the sobriquet “provider” is an affront to them. “Provider” makes them sound like nothing more than a businessperson, and that is an insult.

I remember being in the hospital years ago and my neurologist came into my room. He was wearing a sporty pinstriped summer suit. No white coat.

“I like your suit. You look really nice in that,” I said.

“You mean I don't look professional,” was his reply.

No, I didn't mean that. But apparently the white coat makes the man, and the man is more when he is seen as doctor and wears the uniform. Out of it, he becomes just another person doing business with a patient.

It is an odd thing. We don't call lawyers “Attorney Smith” or architects “Architect Michaels.”

You may recall when the Bidens first came into the White House. There was a hue and cry about First Lady Jill Biden calling herself “Dr. Biden” because, after all, she wasn't a medical doctor. She was “merely” a doctor of education.

Yes, it wasn't medical school, but does that mean that her graduate education was “less than” because it was not a medical school?

I hate to tell those who went through the rigors of medical school that doing so was a choice. No one forced them to become a doctor. And going through what may be the hardest of all graduate studies does not make them better than anyone else.

I will gladly call you “doctor” if that is the only option you give me. But don't confuse the use of your title with me being less elite than you are. Because that is one thing I am not.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The Healthcare System Is Sick, How Could It Ever Heal Us?

By Mia Maysack, PNN Columnist

As a person who has required ample medical attention throughout my life, a constant part of the never-ending struggle for treatment is finding a provider that’s worth-a-damn to administer quality healthcare.

In childhood, I was fortunate to have one practitioner who treated every member of my family. Although most of it was an excruciating trial and error process, I can at least say they tried. When she retired, for continuity’s sake I gravitated toward someone else in the same medical practice.

By then my initial condition (chronic head pain) had not only become more complicated, but I was also battling another diagnosis (fibromyalgia) -- one that the new provider did not seem to take seriously. I chose to dismiss myself from the practice.

At that point, I became more conscious about the sort of doctor I was seeking, so I spent hours researching every clinic in my surrounding area and reviewing doctors’ bios. It was imperative that whoever I chose possess some sort of background or special interest in pain. 

I found a candidate I was so excited about that I left in happy tears after the first appointment. Unfortunately, that did not last long. On the next visit, I was diagnosed with my second round of Covid-19 and they proceeded to blame my chronic fatigue, joint pain and compromised mobility on the coronavirus -- as opposed to the fibromyalgia I’d already been diagnosed with years before the pandemic.

I shrugged it off as a misunderstanding, and assumed they must have meant the exacerbation of my fibromyalgia symptoms was caused by Covid.  

At appointment number three, we discussed preventative screenings due to some issues relating to potential hereditary concerns. After some urging, they explained the process of going in for testing, assured me I’d be contacted by qualified personnel, and guaranteed that I’d receive a direct message from them personally once all this was set in motion.

My only job was to wait, so I did. And I continued to wait. A month later, I’m still waiting.

Of course, I realize I’m not the only patient in the universe. As a retired healthcare worker, I understand the burnout so many providers must be experiencing after the last 3 years.  I recognize the shortages and feel privileged to have any sort of access. That being said, over the last two months at least two members of the pain community have taken their own lives. This is an example of what led them there. 

I vowed this was going to be the final disappointment that I am willing to accept from the healthcare system. I am paying more for medical insurance than I ever have, but receive the least amount of aid.

Given that previous failures are what led me to explore more holistic methods, I do not reside in woo-woo land. Concepts like breath work and herbs felt a bit degrading and insulting at first, but then I decided to set my reluctance aside, remembering how lost just about everything I tried up to then had left me. I reflected on the fact that I almost didn’t survive long enough to even consider something different. 

I’d never suggest that natural treatments will cure whatever horrendous illness a person may be enduring, but I’ll point out that many holistic remedies go back thousands of years. Ideas that were once dismissed, such as gut health being correlated to mental well-being; inflammation being the main culprit in overall sickness; oral hygiene (or lack thereof) directly impacting the heart; and how exercise improves mood and health are now widely accepted as mainstream.

Some of these ideas have gained traction, but utilizing things like plants won’t ever be fully encouraged or supported because it takes money away from Big Pharma – which ironically produces medication that is often derived from natural sources as well.

All of this is an open invitation to explore different ways to care for ourselves. We can remain distraught over our lack of support or we can be empowered by seeking out what we can do, as opposed to what they’ll “allow.”

I don't know about you, but continuing to put the quality of my life in the hands of those who repeatedly demonstrate their lack of concern and who are in the business of profiting off sickness is a death wish. The healthcare system is not only guilty of this, but sick itself. How could it ever heal us?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

The Real Hoax About Prescription Opioids

By Barby Ingle, PNN Columnist

How many have to die? How many have to be denied? How many have to suffer unnecessarily?

Those are some of the questions I’m asking after reading a recent article in The Guardian about the CDC’s revised opioid guideline. The article has a few misstatements about prescription opioids that I have issues with. 

Before I share my take, I want readers to know that I do not take opioid medications myself. I have taken them in the past, but found other treatments that were more effective, so I stopped taking opioids in 2009. I also have an allergy to OxyContin, which I discovered after a knee surgery.

In 2018, I underwent pharmacogenomic testing, which I highly recommend for anyone who has chronic physical conditions. It has given me the best precision care available. I still live with multiple chronic pain and rare diseases, and will need treatment for the rest of my life.

You may be aware that I recently stepped down as president and a board member of the International Pain Foundation (iPain). It was a completely volunteer position. I have been advocating through many nonprofits since 2006 and have always been transparent about any funding that the charity or I received. I also have a degree from George Mason University in Psychology.

Which brings me back to the claims about addiction, opioids and patient advocacy that Dr. Andrew Kolodny, president of Physicians for Responsible Opioid Prescribing (PROP), made in The Guardian article. This quote is from Kolodny about patient suicides:

“This is a really serious issue. But what the opioid advocates, many with industry ties, disclosed or undisclosed, pushed was this false narrative about an epidemic of suicide and so there was a manufactured backlash against the CDC guidelines.

“The notion that there are patients losing access to an effective treatment, and therefore they have no choice but to kill themselves because they’re in so much pain now, that’s a hoax. But the idea that someone in the context of acute withdrawal would kill themselves, that certainly could be real because it’s so excruciating.”

From the perspective of a pain patient and a former nonprofit board member, I want to set the record straight about Kolodny’s alleged “hoax.” Yes, addiction is a serious issue. Under-treatment of chronic pain is also a serious issue. Any mistreatment of people with chronic care challenges is an issue.

The healthcare system in the U.S. is working as it was designed and needs to be thrown out. We are all individuals and should be treated by the providers of our choosing to get the care that we need — not as the healthcare system dictates. Not every provider is great, not every patient is great, and no treatment works for everyone. 

In America, we live in a “free” society. I believe we should be able to choose our own care and moral stance. But I wonder why Kolodny believes his moral stance should supersede what a provider and patient feel is best, whether it’s addiction treatment, pain management or any particular choice of care.

We should have full access to whatever we are willing to do to our own bodies. I have said many times over the years that I do not want to be a guinea pig anymore. I work hard to manage my pain levels, my surroundings, my energy pennies, and the people around me.

‘Advocates With Industry Ties’

Kolodny claims that many “opioid advocates” have industry ties and manufactured a false narrative about patient suicides in a backlash against the CDC guideline.

As a patient advocate who has been working with nonprofits for almost 20 years, I believe that the pharmaceutical industry should be giving money to the pain community to help us with tools and resources that make our lives better.

People think it’s easy for advocacy groups to get funding from Pharma, but that is not true, at least for the small funding that I was involved with. I know firsthand the many checks and balances that are needed before any grant money is provided. It did not matter if it was $100 or $10,000. Nonprofits have to account for it on their tax returns and through audits.

Since 2015, grant money from Pharma for iPain completely stopped, even the small amounts that we were getting. We went from completing over 200 grant applications a year, and getting less than 5 percent of them approved, down to a 0% success rate. There is nothing to report when you receive nothing, which is how it is going now for most patient advocacy organizations and support groups.

Receiving nothing from Pharma did not change our opinions or goals. We found other ways to accomplish them on a shoestring budget. I wish it was easier, but being hard does not stop the movement, because it is a matter of life or death in too many cases. Our work at iPain continued, because it was never about spreading whatever Pharma wanted. It was always about helping patients get individualized care. And all options, including opioids, should be on the table.  

Our work continued on a smaller scale and more creatively than if we had a large budget to get things done. At about the same time that our funding dried up, social media took off and it became easier to reach more people and actually be heard. We were still able to accomplish our goals, at less cost and with less funding.

I do not have the time, energy or space in this column to go into the many financial ties — disclosed and undisclosed — that Kolodny and PROP have with law firms involved in opioid litigation, which funded their efforts to take opioids away from patients. Good God, what is the point of him being so moral in his own eyes, that he does not let other people choose what is best for them?  

Patients losing access to treatment is real. So are patients dying or contemplating suicide. I receive emails and calls from them regularly, even since stepping down from iPain.

The first patient I lost due to being cut off from medication was in 2012. She was one of my best friends at the time. I talked to her often. She was on a medication that was helping. The provider cut her off and put her on a different drug. Neither were opioids. She was stable and doing well with the first medication, but not on the second one. My friend decided that jumping out of a 10-story window to her death would be better than not having the medication that was giving her more quality of life.

Kolodny says someone in acute withdrawal might kill themselves because it is so excruciating. Yes, Dr. Kolodny, withdrawal is hard and you are forcing it on people who are already in pain, who did not need or ask for your opinion. That is the real hoax.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com 

A Pain Poem: Only the Family Left to Tell

By Ingrid Hollis

How many pass, sight unseen
Only the family left to tell?
Yes, we know all too well
It was the pain.

Untreated, unheeded, so it goes
How engulfed in a fiery foe, left untended
It grew from head to toe.

Only the family left to tell,
How this kind of pain, left untreated,
They quickly go.

We cannot afford to go backwards in time,
Too many lost to pain unheeded
To "it’s all in your head” and “no one dies."
For die they do, a horrible fate.

When pain can be treated,
Make no mistake,
Pain knows no limits when untreated it goes.
Intractable suffering, it's horrible blows, becomes 24/7, and it never goes

How long can a heart beat, and a soul keep alive
When a body is stressed beyond limit?
And remember…
No one wants to die

Pain can be treated, make no mistake
Please discard this meme, this heartless theme
"Pain never killed anyone."
We've done it before.

We can't go backwards
We're better than that, we can do more.
Who decides our fate, it hangs in the balance
If intractable pain comes knocking on your door?

Will you be told to go away,
”Pain never killed anyone.”
Now please go away?

Ingrid Hollis is a person in pain and patient advocate. Ingrid recently retired from a leadership role in the Tennant Foundation’s Intractable Pain Syndrome Study and Education Project to care for her family.

Why I Am Stepping Back from Patient Advocacy

By Barby Ingle, PNN Columnist

Each year at Thanksgiving, our family has a tradition of choosing a community project to support. Every year we do something different: caroling, feeding the homeless, or spending time at the local nursing home. But 2006 was different. The year before, I was diagnosed with Reflex Sympathetic Dystrophy (RSD), a chronic nerve disease that my late stepsister also developed.

We had much trouble getting help and care, so at our Thanksgiving dinner in 2006, we decided to start a 501c3 nonprofit to support the RSD community. Although we had joined other support groups and worked with other nonprofits, it was not what we expected. We wanted to be something different. We wanted to be inclusive of patients, caregivers, providers, legislators and providers treating RSD specifically.

But after the first year, we saw that the same challenges we were working to overcome with prevention, diagnostics, treatment and long-term care were happening to many patients dealing with other chronic pain conditions.

BARBY INGLE

Since helping to start the Power of Pain Foundation – also known as the International Pain Foundation (iPain) -- I learned a lot. I went to classes to learn more about RSD, as well as over 150 other chronic and rare disease conditions.

I would say I became an RSD expert, and over the years taught many healthcare professionals, patients, caregivers and industry leaders about treatments, long-term outcomes, and how to navigate the system from the patient point of view.

I have learned that not every patient wants help, not every patient needs help, and not every patient wants the help that you can give. Having a degree in social psychology was helpful. I understood why there are haters, naysayers and pessimists in the pain community. They are in all of society, why would they not be in our community? 

I remember when I was coaching Deb, our marketing director, she would tell me: “Everyone needs a break sometimes. Take your vacations, take your days off, and leave the job behind.”

Well, when you have a chronic illness, you can’t just leave it behind. I have tried. However, you can take time for yourself. It is not your job to help everyone, even if you want to. It is even more necessary to take care of yourself first.

Therefore, I am following Deb’s advice and stepping back. Mostly it’s because I grew tired of the negativity and hate that comes from being in the leadership position that I was in. Whenever we did an iPain project or chose a “Hero of Hope” recipient, I was thanked and would tell people that I only had one vote. But some did not understand that I literally had just one vote.

Today, I have no vote. As of January 1, 2023, I am no longer President of the iPain Foundation. I still love iPain, and I am still going to volunteer for projects and events. But I am going to take the next two years to do other projects and things for me as a patient, wife, sister and human.

The amount of hate I received over the years for doing something that I have passion for became just too much. I was often told, “You only get to do this because of your position” and “If I was in charge, I’d do it differently.”

To those who said that, watch what I do next. You can do many things, whether you have a position of leadership or not. You can take classes (there are many great ones online) and learn how to do the things you think are important. I have done that and will continue to do it. I will show the pain community that you can do big things without a leadership position. Yes, you can be a leader in action, without the title.  

I wish the 2023-24 leadership of iPain all the best, and hope they succeed everywhere with all they take on, create and produce for the pain community. I am glad to have the stress of the job off my shoulders. Am I done? Yes, I am out!

We will see if I join another board of directors in the future, but for now I will do what I have always done as a pain patient: go into the world to make a difference. I am excited to get back to writing columns for Pain News Network and iPain Living Magazine. I am working on a few more books to publish, some additional presenting, and working on legislation in the coming years.

I have a few of my bucket list items to check off, and I will go on more life adventures with my husband, Ken. Most of all, I will be excited to say more and do more of what I want to do, and not out of obligation for a position I was voted into.  

To the pain community: Be good to each other. Remember you get the help you can be given, not always the help you need. The anger, frustration and negative feelings you face are yours. They are normal feelings for a person in pain, but please also remember the person you reach out to for help may not be able to provide the help you want.

Keep going forward. The help you need is available, how you get there is optional. Taking out those negative feelings on others, especially the ones closest to you, is the ultimate way to drive others away. It is your choice. I choose to get out of the negativity and to work on making a difference. To be a little bit more concise, “You be the best you, I will be the best me, too.”

It can be a win-win situation for us both, which is always good. 

You can find me on my personal social media, you will see more articles from me at PNN and other outlets, and you can always check out my personal website to find out what I am up to next. There will be much more to come, and I promise to continue to make a difference and help in ways that I can. I hope I motivate you to do the same for yourself.  

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. Barby has received over 25 awards for her advocacy efforts over the years. You can follow her at www.barbyingle.com