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Chronic pain: The “invisible” disability

Sometime back in 2010, a good friend of mine from college who had since become a pediatrician posted a complaint on Facebook about “made up” health conditions. “Fibromyalgia, I’m looking at you,” she wrote. At this time, pain was more of an occasional visitor in my body rather than the permanent tenant it has since become. Still, I was offended on behalf of those patients with the disease.

Fast forward to today and my life is all about pacing. This is because everything I do — cook, sleep, work, walk — takes time. This gradual approach to every aspect of my life is not about enlightenment or mindfulness. It is about pain. Or more specifically, trying to evade or minimize it. To minimize is key because I’ve learned it can’t be avoided, at least not entirely, no matter my effort. For me, fibromyalgia became a default diagnosis — a catch-all phrase the doctors slapped on me to encompass all the aches and health complaints that had begun to persistently plague me. I received this diagnosis even as imaging showed degenerative changes and other damage in my spine and hips, even as endometriosis was confirmed to be spreading like strands of spider web inside my abdomen, wrapping its tendrils around my organs with the insidiousness of an invasive plant. When the pain reached the point of making it impossible to work more than on a very part-time basis most weeks, I began to inquire about disability. But my doctors — the same ones who diagnosed me, treated me, and viewed my MRI results — all shook their heads and refused to sign off on any paperwork.

“You don’t seem sick,” they said

This was the same line I was offered in college after extreme intestinal distress caused me to lose more than 20 pounds in a single semester. But the school nutritionist thought I just wasn’t eating enough bananas. “You have such shiny, healthy-looking hair,” she explained, pinching a lock of it between her fingers as though I were a doll on display. “People who are really sick don’t have hair like yours.” A colonoscopy showed nothing visibly wrong, so the doctor diagnosed me with irritable bowel syndrome and treated me as though I was a hopeless neurotic. “Stop being so stressed and eat your greens,” he scolded. Two years later, a laparoscopic surgery would show widespread endometriosis, a large portion of it choking my colon. Its removal eased my GI complications considerably. But by then I learned the hard lesson that doctors often erred on the side of disbelief when they couldn’t see something plainly… or even when they could.

I have heard an extensive list of reasons why I can’t be in as much pain as I say despite my test results… and besides my shiny hair, like: I am too young; I have good teeth; I’m too thin to have back problems. Yet, these haven’t granted me immunity from illness, and they have not prevented pain.

Only recently has medical research started to catch on to what patients suffering from chronic pain have long known. As reported in a New York Times Well column written by Tara Parker-Pope in 2011, a study by the Institute of Medicine discovered that pain can endure long after the illness or injury that caused its initial onset has been treated or healed, until it eventually evolves, or devolves, into its own disease. That is, pain is no longer indicative of another prognosis — it is the prognosis, and a disabling one at that.

Specifically, under the strain of prolonged pain, nerves not only become super-sensitized to pain signals, but begin amplifying them. Once these changes occur, they can be extremely difficult to undo. Meanwhile, most medical students are woefully lacking in training in chronic pain, usually receiving only a few hours’ worth in their entire education. In fact, veterinarians receive more training on how to treat animals in pain than medical doctors do for their human patients. Unfortunately, without an adequate understanding of pain and its mechanisms, many medical practitioners are quick to downplay the experience of their patients as faking or exaggerating. What this translates into is denying a disability because it is invisible to the naked eye.

Wiser doctors needed

What would help me at this point would be to have practitioners who are not only more well-versed in chronic pain, but are willing to acknowledge its disabling impacts on their patients. In other words, doctors should start believing their patients when they say they are hurting. Validation is the first step toward a solution, or at the least, toward offering alternative adjustments and treatments that can accommodate a pain patient and bring them a better quality of life in the absence of a long-term cure.


As a service to our readers, Harvard Health Publishing provides access to our library of archived content. Please note the date of last review or update on all articles. No content on this site, regardless of date, should ever be used as a substitute for direct medical advice from your doctor or other qualified clinician.


As a patient advocate, healthcare writer, and peer to peer website moderator, I frequently communicate with people like Laura Kiesel. She is one of (literally) millions of women who are regularly written off as head cases by incompetent or poorly trained physicians who have little familiarity with the assessment of pain. As a result of this pattern, women reporting to emergency rooms with chest pain have a substantially higher likelihood of DYING of heart attacks than do men. Likewise a substantial majority of people diagnosed with chronic pain conditions are women whose treatment has been delayed long enough to exacerbate and complicate their underlying conditions.

Early this week, I gave a 3-minute presentation before a panel in an FDA workshop on “educating physicians in safe prescription practices for opioid medications”. At least three of us spoke on behalf of chronic pain patients during the public commentary periods of this workshop.

My personal input was that the Workshop organizers should feel a deep ethical obligation to adjourn the event without offering recommendations on “safe prescription practices”. This is true in large part because the March 2016 CDC guidelines on prescription of opioids do not comprise a safe or reliable standard of care. In fact, there is compelling evidence that the CDC guidelines were influenced by financial and professional conflicts of interest among the core group of consultants which wrote them. Moreover, this group cherry-picked studies from the medical literature in a deliberate and biased attempt to prejudice their findings against opioids and to magnify the percieved risks of this class of medications. The CDC guidelines are resulting in wide-spread discharges of patients who have been stable and well managed for years on opioid medications — and who are fundamentally not at risk for addiction behaviors. This is a fundamental malpractice and an abuse of human rights in denial of care.

When I wrote about the state of American healthcare at the American Council on Science and Health, I titled the article “A Report Card on the American Healthcare System — F”. Particularly for chronic pain patients, that assessment is highly apropos.

I have adhesive arachnoiditis, level 4 endometriosis, and EDS. I have been on the Whole30 since January of this year. I walk 1-1.5 miles everyday, I do private Iyengar Yoga lessons and practice after my walks everyday. I’m taking every supplement known to help nerves, pain, and inflammation. I have medicine to help me get at least 4-8 hours of sleep. I have a large support system including a therapist. I meditate every day to work on my chronic pain. I have a TENS unit. I have lidocaine patches. I take epsom salt ice baths every night. I fasciablast and dry brush to move my lymph and release my bound fascia. I work damn hard and I am STILL IN PAIN. I still need something to take the edge off. Gabapentin only worked for 1 month, 1 MONTH! Lyrica made me plan out my suicide, thank goodness my sis in law was getting married because that saved my life. Cymbalta gave me a three day migraine where I couldn’t leave the bed. SO WHAT OPTIONS DO I HAVE LEFT. As it is now the only thing I’ve been given to deal with the pain that I’ve had for 2 years is Tylenol 3. Nerve pain is different than normal pain and until they come out with options that are ACTUALLY DESIGNED TO TREAT NERVE PAIN, the chronic pain community needs access to opioids. If we don’t have them you will see the death toll go up, it’s not an opinion, it’s a fact.

For 49 years whether it was muscle spasms, displaced vertebrae, tingling in my arms and legs, blackout causing headaches; I was told it was all in my head or to exercise more. This being said to a woman who played basketball and volleyball 6days a week. Ran 2miles a day 7miles a day. I believed the doctors that there was nothing wrong with me.
In reality there was a lot wrong with me, chronic meningitis, degenerative disc disease, cauda equina, advanced adhesive arachnoiditis with ossification, scoliosis, bulging discs, arthritis, undiagnosed fevers and rashes. These conditions could have been minimised had I been diagnosed and treated early on in my life. At age 48 I could no longer hold a job. My life is constant unrelenting pain. Coursing shafts of electricity through my arms and legs strong enough to kill every battery powered watch I’ve owned.
And at age 58 I was blessed yet again by doctors who scared of the government powers that be discontinued all medications to control my pain. Irreguard that every other non opiate I was given produced violent allergic reactions whether by rash, fever or incoherent speech.
I have lazy egotistical doctors to thank for many of my problems, and scared cover-my-ass doctors who put my life in jeopardy by removing my access to the high doses of fentanyl in one day. No medication to help with the withdrawls. Excuses about cdc rules and state laws. The truth was and still is my condition is pallative, there is no hope for full recovery, the only thing a doctor could do for me is help manage the pain. By doing this my life was ok, I was able to feel like I contributed. Now I sit and hurt, the pain is too strong to concentrate on anything else. It is a force stronger than me that gets me out of my bed daily. But that force is losing its hold, I think more about when I die than what life I have to look forward to.

So thank you Doctors in my past for not being good or even decent at your jobs. For not living up to your oath of do no harm. Thank you for ruining my future and my past. And yes now I really should exercise.

I have degenerative disc disease, severe arthritis and now I have Arachnoiditis (a very rare disease that for me affects my low back and nerve pain down my left leg). I live in Alabama where there are not enough doctors that know how to treat chronic pain and more importantly don’t know how to treat Arachnoiditis. I am now at a clinic where a pain management doctor who has a practice in D.C., comes down once a month because of the lack of PM doctors. I can tell you that if you saw me out in public (which only be one dr. appointment days) that without a shadow of a doubt you would know chronic pain is NOT invisible. I stay bed ridden most of the day because the CDC has their head in another world, they are making it impossible for doctors to treat chronic pain patients with the right medication so we don’t have to suffer. If the CDC doesn’t allow PM doctors to prescribe the medication necessary NOW, the suicide rate is going to skyrocket! There are patients whose medication has been cut in half. I’ve been on just about everything out there that the doctors are able to prescribe and I’m still in pain. I’m scared to death that when I go back to the doctor next week, they are going to tell me their hands are tied because of the CDC guidelines and they won’t be able to give me enough medication to help my pain.

Thank you so much for writing this article. It’s a voice for so many people like us. That have no voice. I have a long story that would take pages to tell. In a nutshell, I was a very active outdoors person, trained and rode horses avidly among other outdoor activities, was an extremely ambitious worker, and was completely independent. I was in a series of three car accidents over the space of seven years, beginning when I was 31. The first 2 we’re very serious, the first I was ran over by a car. The second I was T-boned at highway speed. I got relatively lucky because I “walked” away from both. I did not receive very thorough medical care, so I do not know if I actually broke any bones or not, but it was said that other than a rib or 2, I did not. I did end up with quite a few “mild” bulging disks in my neck and lower back. Because I am extremely stubborn and extremely tough, my injuries did not keep me down in the beginning years like they would’ve other people. I also was religious about doing physical therapy, and did not believe in opioid therapy. Through a combination of exercise, physical therapy, other alternative therapies, good diet, exercise and some other medically advised procedures, I was able to stay working and almost as active as I used to be for several years. By age 37, adter some events, I realized that my injuries were going to catch up to me and I wouldn’t be able to use my body to make a living much longer and that I also wanted to achieve my longtime dream of becoming an engineer or scientist. Or both. So I packed myself up and moved several hours away to a college town and began college. There, I was in a third accident that was relatively mild. I received treatment for that, but my health rapidly deteriorated. For the next 5 years I was in excruciating pain (still am). My feet were on fire all of the time, I had pain in my legs and back, pain in my neck and down my arms and numbing in my fingers. I lost count of how many doctors I went to in the end, but it was well over 20, maybe as many as 40. Before this I had had the pain of bulging disc’s, and other pain. The pain that I experience now was/is severe and debilitating. Instantly upon standing or sitting, anything that was not laying down, my feet start to burn, and it is horrible horrible pain. Not being able to stand or sit without pain interferes with basically every single activity that I do. I tried to maintain my life for a while, but went from a 4.0 GPA to flunking two classes. I’ve never flunked a class in my entire life, in fact I rarely had ever gotten anything below a B, and certainly never anything lower than a C. I went to doctor after doctor trying to find help amd answers. I did not want to let go of my life. But the pain I was in was – and did – destroy my entire life. In a nutshell I was told multiple times things like I was just not being tough enough and I needed to learn to cope “with the kind of pain that happens as you age”, I was told that I “must have had psychological trauma” when I was young and it was now manifesting as a physical pain as an adult, I was told I was faking, I was told I was lying, I was told that since nothing showed up on my blood tests or on my MRIs that therefore nothing was wrong with me and that I “just” needed counseling. Somewhere along the way a doctor, or two maybe,
diagnosed me with fibromyalgia, but then other doctors told me that that was just a “fake” diagnosis and wasn’t a real disease therefore I wasn’t actually sick. This is all while I’m so disabled that putting on my own clothes, getting my own meals, driving myself places and getting groceries were so nearly impossible that I only did it because I am extremely tough. And stubborn. I know other people that could not have done what I did. And because I was so tough and got through it, that actually my doctors disbelieve me even further. I was told that if I could get myself to the grocery store then I wasn’t disabled. It didnt matter to them that I would have to rest in my car for 20 or 30 minutes before going in AND after coming out before I could drive home. I didn’t matter that I couldn’t walk one direction across the entire store therefore was not able to make a whole grocery run in one trip. It did not matter that often I would barely make it across the store to get my groceries, and then the line would be too long (more than 1 person ahead of me) and I would have to abandon my cart and go home. Never mind the fact that if I did not drive myself I literally had no other way to eat and would have starved to death. I’m the kind of person that could break a leg in the mountains and would crawl 10 miles to help – but was told multiple times that since I did not have hospice care, I was not disabled. I was told I needed to pray more, I need to find God, that I needed to find support groups to get over my pain. I was told that I needed to eliminate all negative thoughts, and only be positive and that would fix my pain. I was told that I needed to eat certain foods and That would fix my pain. When I asked for help for disability I was told that I wasn’t disabled enough, that I was too young to be disabled, I was too young to be sick, was told that I was a beautiful woman and therefore was not disabled, I was told that I was overweight and that’s what was causing all my problems even when I wasn’t overweight when they began. I was told that I had beautiful skin therefore was not disabled. (The “beautiful skin” I had was make up). I have heard all kinds of ridiculous things. By the time I finally got the diagnosis for what was wrong with me, I was so beaten down mentally that I was terrified to even talk to this doctor because I was so sure he was going to also send me away telling me that once again there’s nothing wrong with me. I truly wanted to die. I could not handle the pain and stress and doctors not helping me. in the end my adrenal gland’s stopped working from the pain, other organs started showing signs of stress, and I began developing mental problems and cognitive processing problems from the stress and the pain.

I did somehow find enough courage to follow through with seeing this last and final doctor. He diagnosed with a really horrible disease called adhesive arachnoiditis. It is severe inflammation inside the spinal cord that leads to swelling of the nerves and then them sticking together and scarring to themselves and to the sides of the spinal cord sac. It matched every one of my symptoms. It is extremely painful. It is incurable. The symptoms are barely treatable, and pallative care is the only option. When I went back to some of my doctors to say that I finally have a diagnosis and that I needed their help with local treatment, I was met with disbelief, and told that the diagnosis was incorrect. And then reiterated to me that there is nothing wrong with me. I was actually told just the other day that I could not possibly be in as much pain as I thought I was in and I must just be imagining the level of pain I was in. It is astounding to me at the lack of compassion and understanding that the medical community has towards people with chronic pain. I have come to believe that everyone compares their own pain to what other people say and are unable to imagine that there is more severe pain than what they themselves experience. I would think someone that was intelligent enough to make it through medical school, should also be intelligent enough to imagine that a patient coming in and telling you their experience is true. And that it just might be worse than what the doctor themselves experienced. And yet doctors are encouraged now to only believe established text book diagnosises. As if everything about the medical body has already been discovered. And anything new, different or unexplainable “simply” does not exist.

Then there is a further component to the chronic pain patient now where there is now the stigma that if you’re in chronic pain you’re automatically a drug addict or “pill seeking”.
So now just the plain act of stating that I am in pain, and that I need help with it, makes the doctors compartmentalize me, putting me into an unfavorable category, as though I do not deserve medical treatment since MY ailment happens to be pain. And yet I have never used my medication to get high, I have never sold it, I have never taken more than the amount prescribed, I am None of the things I hear on the news. Yet I am labeled a possible criminal because I ended up with a disease I neither asked for nor wanted.

Because being in chronic pain makes you so desperate to not be in chronic pain, many of us have tried many many many things. I for one have tried just about everything I’ve ever heard of. Including special diets, special foods, meditating, positive thoughts, counseling, essential oil’s, herbs, vitamins, supplements, acupuncture, prolotherapy, physical therapy, chiropractic, etc – you name it I’ve probably tried it.

And what have I learned?

Pain is PAIN. And the only thing that helps pain is to either cure the cause or to give you medicine that numbs it. Period. not every cause can be cured. So not all pain can be cured. Sometimes the only option is to numb it. And sometimes the treatment for the cause isnt an already known treatment.

Chronic, severe, intractable pain is a real medical problem. And it’s turning into an epidemic. It is crucial that doctors be trained in it, but instead they are being trained in things like the pain is all in the mind, that you can overcome it with things like positive thinking. True pain cannot be overcome by positive thinking. Positive thinking can keep you from killing yourself over it, but it certainly cannot make the pain LESS. If that were so then we would be able to cure ourselves of cancer, broken legs, diabetes and heart disease soley with positive thinking, without any sort of medical intervention.

Thank you for your article. Thank you for having the courage to say publically your on chronic pain treatment via opiods.
Im sorry for what you’ve experienced, but is very true. There is a huge hole in the medical community lacking information and compassion around how to treat people in chronic pain

What Causes Sciatica?

It’s bad enough to develop pain in your lower back, but when you experience symptoms that radiate down your leg, the problem packs more punch. Such is often the case with sciatica, which can come with a range of unique symptoms you’d rather avoid.

To take steps to prevent sciatica, it’s crucial to understand what leads to the condition in the first place. The team here at Mountain View Headache & Spine, led by Dr. Ruchir Gupta , pulled together the causes and risk factors of sciatica .

Sciatica 101

Before we explore the causes of sciatica, it’s helpful to take a quick look at the anatomy involved. Your sciatic nerve is the largest in your body, and it’s formed by five different nerve roots — two from your cervical spine and three from your sacrum.

These nerve roots create the large nerve, which then splits into two, traveling down each side of your buttocks and into each leg, down to your feet.

When this nerve root is compromised or irritated, you can feel symptoms in the immediate area and symptoms that travel down the nerve. These symptoms can include:

It’s very rare that both sides of the sciatic nerve are affected, so the symptoms of this condition usually only affect one side of your lower extremities.

The causes of sciatica

Technically, sciatica isn’t a primary condition but a symptom of an underlying problem in your lower back.

The most common cause of nerve impingement is problems with your intervertebral discs, such as a herniated disc or degenerative disc disease. Outside of disc issues, sciatica can be linked to:

  • Spinal stenosis — a narrowing of your spinal canal
  • Sacroiliac joint dysfunction
  • Spondylolisthesis — a vertebra moves out of position
  • Muscle spasms
  • Arthritis

In very rare cases, sciatica can develop because of tumors in your lower spine.

Risk factors for sciatica

While there may be little you can do about certain conditions in your back, there are factors that place you more at risk for developing sciatica, such as:

  • Carrying extra weight
  • Standing or sitting for prolonged periods
    Pre-existing conditions like diabetes
  • Aging

While you might think that there’s little you can do about a risk factor such as aging, you can acknowledge the risk and take steps to shore up the support in your lower spine through exercises and stretching. When the support systems in your lower back are strong, it takes some of the pressure off of your discs to avoid rupture and sciatica.

Physical therapy is one of the best ways to offset sciatica, no matter which risk factors you have.

If you do develop sciatica despite your best efforts, the good news is that this condition is rarely a long-term problem and does get better with time and treatment.

If you’re struggling with sciatica symptoms, we urge you to contact our office in Phoenix, Arizona, so that we can help you find relief.

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