It is my fervent belief that yoga saved me from a life of chronic illness, but when my neurologist at the time, Dr. Purcell, suggested it, I didn’t have any idea of the healing powers that yoga offered. I was just so desperate to be well that I would have done anything that might actually help. It was only later that I came to understand why yoga healed me the way that it did.
It shocked me at the time that my nausea went away almost instantly after starting yoga classes. I couldn’t account for it, but I was grateful for it beyond words. The constant year-long nausea and vomiting had been the worst part of my illness, by far. After that, I quickly re-gained the strength, stamina and motivation that had abandoned me, and I began to live again.
It took years to obtain the diagnosis that eventually led to a coherent treatment plan. It wasn’t until well after I recovered that the label “spasmodic torticollis” came into my life. I had to google it to understand exactly what it described, having never heard of it before. It’s such an unusual and odd sounding term that when people ask for my diagnosis and I give it to them, they usually give me a blank look and say, “What was that again?”
In his book, Healing Yoga: Proven Postures to Treat Twenty Common Ailments—from Backache to Bone Loss, Shoulder Pain to Bunions, and More, Loren Fishman, MD has a fortuitous little blurb about my condition. He writes, “A third condition that occurs in the neck isn’t as common, but if you’ve had it or even if you’ve seen it on someone else, you won’t forget it. It’s called spastic torticollis—literally spasmodic turning of the neck. It happens when one group of muscles gets really tight and turns the neck. Sometimes the head turns in jerking motions, and sometimes it turns and stays in an unnatural place.” (Fishman 122-123).
For some time after recovering from the worst of my illness, I had the jerking motions Dr. Fishman describes above. My head would involuntarily turn to the right over and over. It was embarrassing. During the day, when I was in public, I would fight the head turning with everything that I had, and completely exhaust myself. At home, when I was alone, I would relax and let my head do what it would, leading to half watched TV shows and great difficulty in keeping my place when reading. Fishman writes, “This is a condition so painful and so intransigent that you may need a yoga therapist or a doctor who can give an injection that will alleviate it at least temporarily” (Fishman 122-123).
Dr. Fishman’s assertion that spasmodic torticollis is extremely painful is, I think, the reason that my diagnosis and treatment took so incredibly long to obtain. I don’t have much pain at all. I have the odd headache, and my neck and shoulders tend to be a little bit sore, but I really don’t have significant pain. In the very beginning of my illness, my ears and my scalp on the left side of my head hurt, making it difficult to sleep or wear a headset, but that pain went away fairly quickly.
Doctors kept asking me about pain, and when I said I didn’t have much, they immediately dismissed me as a “hysterical woman” trying to get attention for something that wasn’t really very bad. I would like to point out that pain is not the only thing that makes an illness terrible. In fact, I probably would have preferred pain to the ongoing nausea and vomiting that I endured for a year and a half. At least people that are in pain can eat, and they don’t starve to death.
However, Dr. Fishman is right about the injections. Every three months I go in to see my current neurologist, Dr. Matich, who is wonderful and warm and helpful, and she uses a machine to measure my involuntary muscle contractions. She does this by inserting a probe into each affected muscle and listening to the sounds they create through a special machine. Sometimes my muscles whoosh and growl like storms. Dr. Matich then injects botox into the extra loud muscles to help them relax, and I can hear the muscle-storms grow calm. Over time, this has been a helpful addition to my care, but I honestly don’t think it’s nearly as helpful as yoga.
In Healing Yoga, Dr. Fishman describes how “Laboratory and clinical studies have confirmed that pain from upper cervical joints and muscles can be referred to the head” (Fishman, 121). I think this was exactly the complicating factor in my own illness. I believe that what happened to me goes something like this: the whiplash injury that I endured caused the upper cervical muscles in my neck to go into spasm, which irritated muscles and nerves in my head, leading to migraine symptoms, but no pain. I had the visual disturbance, nausea, vomiting and cognition problems that go with severe migraine, but the pain never showed up, which confused everyone—including me.
If he had known about me and my illness, I believe that Dr. Fishman would have backed up my neurologist’s suggestion that I treat my symptoms with yoga. Dr. Fishman writes, “Appropriate yoga is good for almost anything that ails the neck and for pain referred from the neck to the head. . . It improves suppleness of the neck muscles and increases the versatility of the joints so they can move more easily in many different ways. It refines the coordination of the various muscle groups, so muscles aren’t pulling against each other with such ferocity” (Fishman, 123). I believe that these benefits are part of the reason that I began to feel much better quickly after beginning my yoga practice. With my neck muscles in spasm, I needed something to interrupt the process of pulling muscles irritating the tissues in my head, and yoga miraculously did that for me.
However, I think there was another contributing factor. I think that the muscles, nerves, and other tissues in my neck and my head were terribly inflamed by the whiplash injury, at least partially causing the migraine symptoms. Multiple studies have shown that inflammation is a leading factor in many of the chronic illnesses that people suffer from, such as fibromyalgia and chronic back pain. Treatments for pain often focus on decreasing inflammation using NSAIDs (non-steroidal anti-inflammatories), such as over the counter ibuprofen, or stronger prescription versions, like Naprosyn. Many people, including myself, take a daily turmeric pill, which is a spice used in some forms of cooking, because it’s been shown to have anti-inflammatory qualities.
I didn’t know it at the time that I started my yoga practice, but yoga decreases inflammation too. Dr. Fishman writes, “We physicians can’t do much apart from medication for swelling of joints; your body can do more by itself, using a molecule called PGC-1alpha. This is a potent endogenous anti-inflammatory that reduces swelling anywhere it occurs in the human body. Gentle activities such as yoga and tai chi, and especially yoga done for long periods of time, encourage the body to release this miraculous substance from your muscles” (Fishman, 122). The joints in my neck were certainly inflamed after the traumatic whiplash injury that I suffered, and I believe that getting involved in yoga significantly helped to reduce that swelling through the release of PGC-1alpha. How miraculous!
Because of its anti-inflammatory effect, I believe that yoga should be a frontline treatment for any physical ailment that is caused by inflammation. Can you imagine the wellness that would result if doctors would prescribe yoga for arthritis, fibromyalgia, back pain, and any of the other ailments that they usually prescribe pain medication for? I truly believe that the world would be a much healthier and happier place.
Speaking of happiness, I’d like to say a little about how chronic illness affects mood. Dr. Fishman writes, “. . .chronic pain does more than cause people to lose days of work. It’s depressing. It produces anxiety. It makes life so hard that sometimes it doesn’t feel worth living. I think it’s extremely important to address pain that could be or is becoming chronic and end it as soon as possible” (Fishman, 86). While Dr. Fishman talks about chronic pain being depressing, I would like to add that chronic illness is depressing whether pain is involved or not. Before my injury and subsequent illness in 2011, I was the happiest I’d ever been. I had found a group of people where I seemed to fit in completely for the first time in my life. I was active and social and enjoying every minute of it. Then, the whiplash injury happened, and my happy life became very small and extremely unpleasant.
As I sought help, doctors kept telling me that my symptoms were the result of anxiety, and they kept pointing out how anxious I was in the appointments, and how sad and alone I was. I argued that I was anxious because I kept seeking help from professionals who dismissed my symptoms, and I was depressed because I was terribly ill and unable to do the things that made my previous life so wonderful. But the doctors continued to insist that my symptoms were the result of anxiety and depression, not the other way around. I found this incredibly frustrating and demeaning, and it’s refreshing to have Dr. Fishman acknowledge that chronic illness leads to a life that doesn’t feel worth living, because it absolutely does.
However, it appears that the psychological effects of chronic pain and illness are even worse than I previously thought. Dr. Fishman writes, “. . . there is a less-recognized reason: chronic pain that lasts more than a year seems to have negative effects that last much longer. A study done at Northwestern University shows that a year of chronic back pain actually shrinks the gray matter in the brain by as much as 11 percent, the equivalent of ten to twenty years of normal aging, and that loss is directly related to the duration of the pain” (Fishman, 86). Ten to twenty years of normal aging caused by one year of chronic illness! Honestly, that blows my mind, but I’ve seen it happen.
In my own case, after my illness went into remission, and I got treatment that made sense, it took a couple more years for me to be able to focus on reading a book, or to be able to write the way that I had prior to getting sick. I’m sure that recovering from brain atrophy was one of the reasons that it took me almost 10 years to get my book project together.
My grandmother became ill within the past few years. Within a year of getting sick, she went from a vibrant older woman who managed a home of her own and loved to sew quilts, to a woman who needed 24-hour care and couldn’t recognize her own grandchildren. Now she’s living in a nursing home that specializes in dementia care, and I’m certain that her illness was a major contributing factor to her mental decline.
Truly, we must take chronic illness and chronic pain seriously. It not only decreases life satisfaction, causes anxiety and depression, it actually causes brain damage. The good news is that in addition to other wonderful effects we’ve already discussed, yoga can help with the terrible mood and brain problems brought on by illness. Fishman writes, “Clinical trials confirm that yoga helps reduce distress and depression and promotes a sense of calm well-being” (Fishman, 191). He also explains that yoga is being used to treat PTSD. “The Naval Medical Center in San Diego and other military VA hospitals are offering yoga to help Marines, soldiers, sailors and others wounded in Iraq and Afghanistan who are suffering from post-traumatic stress disorder. Preliminary military studies have found that the calming effect of yoga can assist PTSD patients in dealing with hypervigilance, flashbacks, depression and anxiety” (Fishman, 201). Honestly, I think yoga is the cure-all that people are looking for, but it is under-prescribed and under-utilized.
Please spread the word about the healing effects of yoga. Even though it’s more work than taking a pill, I think it’s more than worth the effort. It saved my life. It could save yours too. Dr. Fishman lists multiple ailments that he has personally and effectively treated with yoga, including: back pain (both neurological and musculoskeletal), rotator cuff syndrome, headache, weight control, bone health (osteoporosis), insomnia, scoliosis, premenstrual syndrome, depression, restless leg syndrome, bunion, and plantar fasciitis. While this is an extensive list, I’m willing to bet that there are many more conditions that would respond positively to treatment through yoga, and I encourage you to give it a try.
Last week, I got the clean-out-the-closet bug, and I decided to start with the bathroom medicine cabinet. In true Marie Kondo fashion, I pulled everything out of the cabinet, and dumped it all into the sink, filling it up with random bottles of pills and personal hygiene products. After wiping down the empty shelves, I examined each item in order to decide whether to keep it or throw it away. Quickly, I discovered that this wasn’t an ordinary clean-out-the-cabinet moment. This was the moment that I had chosen to throw away all of the expired bottles of medication from my illness in 2011.
The bottles had been sitting there, undisturbed, for nine years, because I wasn’t yet ready to look at them, and the idea of letting go of any of the medications that helped stop my death was terrifying. After a pause and a deep breath, I threw every bottle into the trash, except for the zofran. After nine years, I’m still not ready to throw away an expired bottle of anti-nausea medication that I no longer take. That’s how traumatized I am by suffering through a year-and-a-half of nausea and vomiting.
Ironically, I had the time to perform this mini purge because I was listening to a continuing education course taught by Dr. Bessel van der Kolk (see below for a link to his website), a prominent psychotherapist who wrote the book The Body Keeps the Score (see below for a link to purchase the book), which is about how our internal nervous systems hold trauma, and the importance of physically working it out instead of trying to think it away. The difficulty I had with throwing away bottles of expired and unused medications is an excellent example of my body holding the trauma of my illness, and the act of throwing those bottles in the trash is one of many physical ways that I’ve moved tiny bits of trauma out of my system.
Just at the end of my illness, as the nausea was passing, I scheduled a massage. I thought that it would be nice to receive some caring touch after such a terrible experience. I’d never met the massage therapist before that massage, and I never went to see her again, but that massage was the first time I experienced how body work can move trauma. When the massage therapist touched the place on my lower back where I’d had a lumbar puncture, I began to cry. The tears intensified, and flowed down my cheeks freely, as she touched other places on my body, such as the inside of my left elbow where I’d once had so many IVs that I had track marks.
As I continued to move through my house, throwing out remnants of my past, Dr. van der Kolk said something that gave me pause, and I stopped working so that I could listen more closely. He said that there are two experiences that lead to the formation of Posttraumatic Stress Disorder. The first piece is the traumatic experience that happened, and the second piece is not being seen and supported by your community.
He gave the example of the destruction of the World Trade Center on September 11th, 2001. According to Dr. van der Kolk, very few people who witnessed this terrible event developed PTSD because they were supported openly by their communities. There was no shame in what they had experienced, so they could speak authentically about it with each other, and receive open support from others who understood.
However, in many more personal traumas, the experience of being supported and witnessed is missing. For rape victims, there is a wall of disbelief and victim blaming. For incest survivors, there is shame, and years of fear that if they tell, things will only get worse. Silence breeds shame. The more unable the victim is to share openly about what happened, the more the shame grows, leading to the perfect breeding ground for PTSD.
As I stood frozen, listening to Dr. van der Kolk explain how it isn’t just the traumatic experience that leads to PTSD, it’s also the quality of support from the community, I began to realize exactly why my illness was so intensely traumatic. The medical community did not see me. Instead of believing what I told them about my neck injury and subsequent illness and helping me to find a treatment, they told me that the neck injury couldn’t have been the cause, and that it was really only anxiety. Then, they prescribed anti-anxiety pills and sent me home. Here are a few of the things that medical providers said to me during my search for help:
“Your symptoms don’t make sense.” (Said by the first neurologist that I saw).
“Oh, you again?” (Said by an ER nurse who must have attended me on a previous emergency room visit).
“You seem pretty anxious. Maybe you should admit to yourself the possibility that this is all just caused by anxiety, and perhaps some mild depression.” (Said by an emergency room doctor).
“I think this is something that is going to get better with time.” (Said by yet another neurologist).
You get the idea.
They didn’t see me at all. They invalidated my experience and minimized the fear that I was feeling as a result of severe physical symptoms; not as the cause of those symptoms. Perhaps even worse, because trained nurses and physicians, without any evidence, blamed what I was experiencing on anxiety, so did some of the people in my life that I desperately needed to validate and support me. As a result, except for a couple of incredible people who truly stepped up to the plate, I went through a year-and-a-half long illness alone.
It’s been my conviction since the time of my illness, that the callous treatment I received from medical practitioners made me sicker, but I’ve had trouble articulating exactly why. Suddenly it’s clear to me that each time a doctor told me that it was probably just anxiety, or a nurse greeted me with “Oh, it’s you again,” when I went to the emergency room, my nervous system was becoming more and more traumatized by not being seen and helped.
Unfortunately, this treatment is deeply rooted in the medical system due to the medical history of hysteria (see link below for additional articles), which says that people (most often women) often have medical symptoms that don’t have a medical cause. These symptoms are caused instead by the repressed emotions of the patient. While this idea is now called other names, like somatoform disorder, the idea is still alive and well, and doctors are encouraged to root out the “hysterics” from the “truly sick” people so that they can focus their efforts on people who are treatable. Even when the patient denies being anxious or depressed, the doctors don’t trust them because the very foundation of the idea of hysteria is that the patient is repressing the emotion. Medical syndromes that used to be dismissed as hysteria include: asthma, fibromyalgia, chronic fatigue syndrome, and endometriosis, and epilepsy, just to name a few.
As a result, patients who don’t readily fit into a diagnostic box are often dismissed without any testing or treatment. In a medical system where patients often don’t get to see the same doctor again, or they choose to change doctors after not being heard, that original doctor never learns the true diagnosis, if anyone ever does. Diagnosis and treatment are delayed (if they ever happen as many people give up), often leading to disastrous medical outcomes for the patient. I’ve read stories of cancer patients who died, but could have been saved if the doctor had done a simple test instead of sending them home with a “You’re fine. It’s just anxiety.”
I would like to submit that the damage caused by the idea that repressed emotion is the cause of outside-of-the-box symptoms is even worse than missed diagnoses and delayed treatment. It is also the cause of medically-induced trauma. Patients whose terrifying medical experiences are dismissed out of hand without testing, are experiencing both of Dr. Bessel van der Kolk’s criteria for PTSD; a traumatizing event (the illness) and an unsupportive community (the dismissive medical professionals).
It is my hope that by sharing this realization with you, I’m taking a step towards changing the way that the medical community interacts with patients. It doesn’t cost anything to listen to someone, and the cost of not listening is great–in traumatized patients and lives lost.
If you have experienced, or are experiencing, a wall of disbelief from the medical system, you are not alone. Please continue to advocate for yourself. Keep asking to see another physician for a second opinion until you get someone that will help you. You are the authority on your own body. You live in it every day, and know what you are experiencing better than someone who met you 5 minutes ago and came into the room with the historical bias of hysteria.
In my own case, I went through several neurologists, until I got to Dr. Ian Purcell (see link below for his website), who is a super-specialist. He and his staff listened to me. They never once blamed my symptoms on anxiety, and through a combination of medication, physical therapy and yoga, I got well. Keep trying until you get to your Dr. Purcell.
Like the rest of my personality and life, my illness was outside of the proverbial box, and I had difficulty explaining what had happened to me when I was seeking help from medical professionals. Part of the difficulty was due to the cognitive effects of the injury that I sustained, and another part was due to the pure strangeness of the circumstance. Whenever I said that I had a whiplash injury, people would assume that I had been in a car accident. When I said that I’d sustained the injury while dancing, people would dismiss me as overreacting to a minor injury. I actually had several medical professionals laugh.
Since I’m writing this blog in support of the book I’m writing, I’m Sick, Not Crazy: How I Took Control of My Health When Western Medicine Told Me it Was All in My Head, I think it’s important that you understand the injury that kicked off my illness, so here’s the description from chapter one of my book (names have been changed to protect the not-so-innocent):
The night it happened, Michael, who organized the events, asked me to dance. I was a little bit surprised. My relationship with Michael had been awkward, for reasons that I didn’t fully understand, and for months he hadn’t asked to dance with me. He was highly experienced, so he was fun and exciting to dance with, throwing in moves that I hadn’t been led into before. Our dance started out fun and easy, and I relaxed into his practiced lead. Then, to my complete surprise and chagrin, he grabbed my ribcage under my armpits with both his hands, and forcibly flung my upper body backward into a dip.
As my spine curved as deeply as my body would allow, my head flung in an arc. Having trusted Michael to lead me with respect, I wasn’t guarding myself, so my body was warm and pliable. Mid-forced-dip, I did my best to flex my muscles and protect my body, but it was too late. Michael abruptly pulled my body back up and out of the backbend. Centrifugal force had its way, and my head continued backward as the rest of me was pulled upward, and my neck made a loud CRACK sound and stretched out from my shoulders like a slinky with a bowling ball stuck on the end. Something at the base of my skull, on the left-hand side, seemed to become loose and squishy. Wow, I thought, that felt really weird. After what seemed like forever, my head caught back up with my body and I stood upright in front Michael, dazed.
He grinned and said, “I know you like it rough like that.”
I frowned at him. He didn’t seem to notice my distress at all, and just kept leading with a self-satisfied look on his face. Shocked into silence, I unenthusiastically kept following his lead, waiting for the song to end so I could get away without a public confrontation. When the song ended, and Michael let me go, I was relieved. I sat down, shaken; taking stock of my body. Rolling my neck from side to side, checking the range of motion, and moving my limbs around told me that my neck wasn’t broken. I told myself that meant I was OK, and I got up and got back into the dance.
In the morning, concerned for my own wellbeing after the dipping incident of the night before, I went to Urgent Care. The doctor took X-Rays and told me that everything looked fine. No lasting damage. Relieved that it wasn’t more serious, I resolved not to dance with Michael anymore, and mentally planned to get back into my regular routine.
That night, I woke up a few hours after falling asleep and vomited until the sun came up. Over the next few weeks, things steadily got worse. There were days where I felt mostly normal, and days when I felt like I had been filled with poison and couldn’t see or think straight, and the worst was the nights spent on the bathroom floor vomiting into the toilet. Never having sustained an injury that didn’t readily heal before, I thought that if I waited it out, I would start to feel better.
With the attitude that this was all quite temporary, but that I should get looked at anyway, I decided to go and see my own primary care physician, Dr. Benavides, and explained to her the injury that I had sustained and how I was having so many problems afterward. I felt certain that she would know what to do. All of my experience of the medical system before this had shown that they would be able to help me when things got rough.
When I had pneumonia and was so weak that I couldn’t make a fist, there were antibiotics. When I had labyrinthitis and was so dizzy that I had to crawl back and forth from bed to the bathroom until it cleared up, the doctors had known what it was and what to do. I had even been hospitalized a couple of times, but the doctors had been able to diagnose and treat my symptoms effectively. In my mind, I wouldn’t be alive if it weren’t for Western medicine.
Dr. Benavides listened to my story and then had me put my arms out straight ahead of me and resist her while she pushed down. She said that it seemed that my body was stable, and she wanted me to engage in physical therapy. She made the referral and I started seeing David, a physical therapist, a couple of times per week. He was tall and thin, with the coolest hands I’ve ever encountered, which felt delicious when he worked on my neck. The poor man spent an inordinate amount of time working in my armpit, and he kept telling me to place my hands on either side of open doorways and then stretch my arms open against them to open up my chest. He said, “I don’t think you could do too much of that.” I did the exercises he prescribed religiously, but things only got worse.
My buttocks were extremely sore for several weeks, to the point that I had to buy a cushion for my seat at work and sitting down after standing was so painful that it I groaned. I started to have a sensation of strangling across the front of my neck. It felt like I was slowly being garroted all of the time, and sometimes I felt I could hardly breathe. There was numbness and tingling in my forearms and pins and needles in the back of my neck. My head felt unstable on my neck like my muscles were suddenly too weak to hold it up. I was frightened.From I’m Sick, Not Crazy by Jennifer James
Things only deteriorated from there. It’s still not clear exactly what happened inside of my body, although I have some theories. Diagnoses ranged from brain cancer to occipital neuralgia to multiple sclerosis as I went through multiple medical tests to try to find out what was wrong with me and how to treat the problem. The testing process was traumatic, and didn’t ever give a definitive diagnosis. Eventually, I had to accept that my body was never going to be quite the same, and start looking for ways to minimize the impact of the injury on my life, and maximize my ability to live.
As it turned out, Western Medicine didn’t have the answers I needed, and it wasn’t until an inspired neurologist suggested that I start practicing yoga that I actually began to heal. My book describes the descent into illness, and how I managed to pull myself out of the hole through alternative treatments. I believe that those of us with outside of the box illnesses don’t have to rely on a medical system that doesn’t know what to do with us, and often blames us for what we are going through. We can take control of our own healing and move toward wellness through multiple avenues. It can take some trial and error to find what works for you, but I encourage you to explore, and yoga is a great place to start, especially for physical injuries.
I was 34 years old when I went through my serious illness, and I’ve always looked young for my age. As the illness progressed, I became extremely thin, which made me look even younger. People expected me to be healthy and happy because that’s how I looked to them. One day, while sitting in the lobby waiting to see a neurosurgeon, because an MRI scan had shown a brain abnormality that the neurologist thought was a tumor, an elderly man looked at me and said, “You don’t look sick enough to be here. You look too young and healthy.”
His words struck a painful chord in my heart. By the time that I got to that neurosurgeon’s lobby, I’d been accused of lying about my illness so many times that I’d actually begun to question my own veracity. Not because I wasn’t being honest about my illness, but because everyone around me seemed to believe that I couldn’t be as sick as I was. Multiple doctors told me that the problem was really anxiety or depression. If I’d had the energy to appreciate irony, I would have smiled at their desire to diagnose me with a mental health problem instead of a physical one because, as a psychotherapist, I was just as qualified to diagnose anxiety and depression as they were. I was afraid, yes, but it was as a result of the illness, not the cause of it.
After being disbelieved and turned away, my desire to be heard and to be helped with what I was going through became somewhat desperate. This didn’t help my situation at all. The doctors felt my desperation, and it further convinced them that I was simply an anxious person, not a sick one. A cycle developed.
As a psychotherapist, I was taught that I am not the expert on what the client is going through. Clients are the experts on their own experience, and it is my job to explore and respect that experience. It’s my belief that if medical professionals would adopt this stance, people would get the help they need to get better much more quickly and easily. Patients would feel heard and understood, and there is evidence that experiencing compassionate understanding is medicinal in itself.
Injuries, like the one that led to my illness, can happen to anyone at any age. Illness is the same. In fact, there are illnesses that primary affect the young. Just because people look OK on the outside, doesn’t mean that they are OK on the inside. I would like to ask the world to stop telling other people what they feel, what they are experiencing, or who they are. If you think about it, it makes no sense for me to tell you what you are experiencing. How on earth could I know? Ask questions. Reserve judgment. You’ll be surprised by how much you can learn about someone if you do. And you never know; the knowledge you gain might just save a life.
Every year in January, I get an MRI of my brain. This has been going on for 9 years now, so it’s not really a big deal to me, and I don’t expect that I’m going to get bad news anymore. It takes about a half an hour of being in the MRI machine, which doesn’t freak me out as long as I keep my eyes closed. I learned my lesson quick on that account when I opened my eyes during one of my early scans and saw the top of the tube right in front of my face, and nearly went into a claustrophobia panic. For the first twenty minutes of the scan, I just lay in the tube and try not to be deafened by the cacophonous clacking of the magnets, and then they pull me out of the tube and inject a contrast solution and put me back into the tube for another 10 minutes. The purpose of these scans is to make sure that a spot they found in my brain during my 2011 illness doesn’t change. As long as it doesn’t change, they tell me that they just want to let it be. I do my best to trust that they won’t ever have to do anything more invasive to my brain.
This year, I scheduled my yearly brain scan in a new location thinking that it would be more convenient for me. Getting ready for an MRI is kind of like going through security at the airport in that they are quite concerned about metals of any kind on your person. They ask if you’ve ever been exposed to shrapnel, if you have any metal implants of any sort, and then they make you strip and get into a hospital gown just in case. I hope they never start doing that last part at the airport.
Arms wrapped around myself to ward off the chill of walking around in a hospital gown, I got into the machine with the help of the MRI tech and the nurse, and was prepared for it to be the same routine as every year for the last nine years, but this time, when the tech pulled me out of the tube to do the contrast injection, it was quite different. Since I have an aversion to needles, I looked away as he prepped me by wrapping a tourniquet around my upper arm and told me to make a fist. Then he told me that there would be a slight sting, and I prepared myself for the usual injection pain, but this time it was so much worse that I started to sweat and got woozy. It felt like the vein in my right arm was going to explode.
I told the tech, “Wow. That hurts a lot more than usual, and it’s making me feel faint.”
He said,”Oh, don’t worry. That’s just the pressure of the contrast against the walls of your vein.”
Trying to take deep breaths against the pain and wooziness, I said, “I’ve had this done a bunch of times and it never felt like that before.” I didn’t want to say it, but I felt like he had the needle in wrong.
His response was, “I’ll just do it as slow as possible for you.”
Um no. “Actually,” I said, “please finish as quickly as you can. I need to get this over with or I’m going to pass out. I have a history of doing that.” This is true. I’ve always been squeamish around medical stuff, but due to my protracted illness in 2011, my medical trauma has made my squeamishness exponentially worse.
He finished the injection, and said, “Never had that response before, huh?”
“No,” I said, taking deep breaths and trying to mentally be somewhere else . . . somewhere cool, like Scotland.
With that, he put me back in the MRI tube to complete the scan.
Now, it’s entirely possible that I just had a bad reaction to the injection, but the tech’s assumption that it was my problem, and not anything that he might be doing wrong was triggering for me. I’ve had blood draws before that were terribly painful and left bruises because the phlebotomist made a mistake, so I know that it’s within the realm of possibility that the extreme pain of the injection this time wasn’t just my own reaction, especially since this is the ninth time I’ve done it, and I’ve never had a problem before.
The reason that I bring this up is that one of the main premises of my book, I’m Sick, Not Crazy, is that the medical system needs a huge compassion overhaul. During my 2011 illness, I was shocked by the number of times I was told that the problems I was having were likely “just anxiety.” They definitely were not due to anxiety. It’s true that I was terribly afraid about the awful and unexplained symptoms I was having, but I knew that they were due to a neck injury I’d sustained. It took months to get any doctors to listen to that explanation.
I went from doctor to doctor without any relief, and a huge increase in stress and sickness. Eventually, I came to a frightening conclusion. I believe that there is an entrenched culture in the medical system of blaming the patient when the doctor doesn’t know what the problem is. I also believe that this bias toward blaming the patient is a major barrier between patients and the diagnoses and treatments that they need. My hope is to spread the word that a small increase in compassion and the ability to listen to what patients are saying would create a huge shift in the wellness of the community. I hope that you’ll join me in the work to spread this message.
Every three months I go to see my awesome neurologist for botox injections into some of the muscles in my neck and along my spine. After a severe injury in 2011, I was terribly ill, and had a slew of diagnoses before they finally settled on spasmodic torticollis, which means that the muscles along my neck and spine have a tendency to contract involuntarily, causing me to sometimes make odd movements with my head and my shoulders. Every now and then someone will point it out, but most of the time people can’t tell that it’s a problem from the outside. From the inside, the worst part is a sensation of movement under the skin, like bugs are crawling along the back of my neck and head. It’s not painful, but it’s frustrating and distracting, especially when I’m trying to sleep.
Today, as my doctor inserted a probe into neck and back so that she could listen to the muscles, which gives her information about how much botox to inject, we discussed the fact that we both work as providers for Kaiser, (her a neurologist, and myself a therapist) and that we are mostly lucky in our patients. I agreed that most of my patients are lovely people, and I feel honored to help them. Then she said something that resonated with me. She said, “The ones that aren’t nice to us have been through a lot. They have a lot of somatic symptoms, and they’ve been minimized to the point that they feel defensive.”
She didn’t know it, but she had stepped into one of the main themes of my book; the fact that when people are ill and seeking help, and they come up against medical professionals that minimize their symptoms and tell them that they aren’t real, it’s harmful. It causes them increased stress, which has been shown in research to exacerbate symptoms of illness, shut down healing, and erode DNA, causing aging. Research has also shown that a small amount of compassion on the part of healthcare providers/medical professionals goes a long way towards decreasing pain and healing times, as well as helping patients to understand their treatments in a way that leads to better compliance with medications and procedures that their doctors recommend.
Hearing my neurologist acknowledge the struggles that some people go through trying to get help while they are also suffering with any number of possible illnesses, and how negatively that affects them, was a beautiful thing to hear. It not only led me to trust her more as a person of empathy and professionalism, but it also motivated me to continue the work that I’m doing to get my ideas out to the world, and to you.