Stormy Weather in my Muscles and the World

In 2011 a severe neck injury left me incapacitated.  Not with pain as most people expect from neck injuries, but with an illness with all of the symptoms of a severe migraine, but without the pain.  I couldn’t hold any food down, eating was revolting, my vision was often blurred or doubled, and my thought process was so terribly impaired that I often couldn’t make simple decisions, like whether to turn right or left.  This went on for over a year-and-a-half without explanation or relief, until an inspired neurologist suggested that I begin practicing yoga, and my healing ensued.  I maintain that yoga saved my life.

Through a lot of hard work and time, I’ve healed to the point that I live my life fairly normally.  Eating is enjoyable again, and I can keep my food down.  I love my body in a completely new and different way after realizing that having a few curves means that I’m healthy enough to eat the delicious food around me, which sustains me and feeds my curious mind.  Working isn’t a problem because my thought process and ability to make decisions has been restored, and while the aging process has led me to need reading glasses for close work, my vision is normal again.

However, there are some frustrating and somewhat embarrassing chronic problems that I deal with every day.  The most visible is the fact that the injury to my neck distorts my face a little bit.  Probably most people think that it’s just how my face was made, but whenever I look in the mirror, and especially when I see myself on film, I cringe a little bit.  While I used to have even features, post injury, the lower half of my face pulls to the right, which distorts my mouth and gives me a slightly lopsided appearance.  I do my best to love my face anyway, and thank my body for healing to the point that I can live my life normally again, but I have to admit that it rankles some that my face bears the mark of my illness so clearly for all to see.

The worst of the chronic symptoms left behind by my injury and illness plays out in my sleep.  The stress on the muscles of my face and jaw cause clenching, and I have to wear a mouth guard.  Still, I wake up many mornings with an aching face and jaw.  Yet, it’s something else that plagues my rest.

It started to happen just as the nausea, vomiting, thought process and vision problems began to subside; a strange, involuntary pulling in my neck muscles that turned my head to the right, back, and to the right again, like a tic.  It was humiliating when the women who sat behind me at work noticed.  I could hear them talking about it behind my back.  One even ventured as far as to ask me if I was OK when I was having a particularly difficult pulling episode.  I simply said I was fine.  A lot of the time, the pulling made me want to close my eyes.  It was difficult to keep them open, and when I was alone, I would sometimes sit for hours with my eyes closed, allowing my head to move how it wanted, instead of straining to keep it straight to avoid the humiliation of people staring and whispering.

In addition to the pulling and tension, which I have learned to push back against so most people don’t notice, there is a sensation of moving and crawling under the skin of my upper back and neck.  This is what keeps me awake at night.  Somehow the pressure of my pillow against my head, neck and upper back makes the crawling feeling worse.  Often I sleep without a pillow for less surface area affected by the pressure.  Sometimes I end up laying on the floor instead.  A hard surface means an even smaller area of pressure.  Sometimes, I just don’t sleep.

Working with my neurologist, I started to receive botox injections into the muscles of my neck and upper back every three months in order to get the them to relax out of their constant state of contraction, known as dystonia.  The injection process makes me sweat.  My amazing and gentle neurologist apologizes as she inserts a probe into each of the muscles of my neck and upper back so that she can listen to the level of contraction on a machine.  Don’t ask me how this works, but it does.  Sometimes my dystonic muscles sound like thunderstorms.

The decibel level of my muscle storms helps my neurologist determine the amount of botox to inject.  During the three month interval between injections, the dystonia storms decrease for a time, and then increase again.  I do my best to maintain my physical inner stillness through yoga, chiropractic, meditation (the crawling sensations make this incredibly difficult), and massage.  All of these treatments help.  Together, they keep me sleeping just enough.

This past month, the appointment for my botox injections was canceled due to COVID-19, and since then my muscle storms have been extra loud.  I’ve been spending hours of my nights on the floor, and awake.  While I’m tired and uncomfortable, I count my blessings because my patients tell me stories that are much worse.

I’m working with a man who has severe back pain, to the point that he struggles to get out of bed, can’t function, and is desperately depressed.  His pathway to obtaining the surgery he needs to be able to function is blocked by COVID-19.  I’m worried about his ability to wait it out.

Another woman I work with has lupus, which is controlled via the medication hydroxychloriquine.  The scientifically unfounded assertions that this medicine can be used to treat COVID-19 have resulted in a shortage so severe that she can’t get her prescription filled for the chronic condition that it is actually intended for.  When she told me this, my mouth dropped open in consternation.  Untreated lupus has severe medical consequences.

The world is currently held in the clutches of an acute and life threatening virus, and I understand that my appointment for the botox injections that help me to live a more comfortable life were canceled to prevent exposure to both myself and my neurologist.  I’ll be OK.  However, I question the compassion of a world in which people take a life-sustaining medication away from someone who is uses it for its intended purpose, and redirects it based on dubious, non-medical assertions.

I also question a medical system that makes the cruel decision to keep a man in debilitating pain for months without treatment, relegating him to an existence of despair.  It seems to me that COVID-19 can be dealt with appropriately, and still create space for him to receive the help that he needs.  Our therapy appointments leave me feeling powerless, but I know my distress can’t even touch what he is going through.

My thoughts are with the people with chronic syndromes who are being left behind right now.  Please don’t lose hope.  I still see you, and I hope that in writing this piece others will see you too.  This situation can’t last forever, and I know that the hearts of the world, and the medical system, will re-open to you soon.  In the meantime, I suggest you try some online yoga classes, get outside for fresh air, do whatever you can to interact with your loved ones, and be gentle to yourself about the struggle we’re going through communally.  When in doubt, I always recommend increasing self care, because you deserve it.

 

An Interview with Heather Fenwick, Acupuncturist

In addition to this blog, I’ve been working on an “I’m Sick, Not Crazy” podcast, and I did my first podcast interview via Skype on this past Thursday with Heather Fenwick, who specializes in acupuncture and Chinese Medicine.  The interview was fascinating, and I thought that I would transcribe it so that I could share it in writing as well as video format.  After about 5 hours and 16 pages of transcription, I realized that was a mistake, and I decided to just share a few highlights here with you.  To view the entire interview, please check out my podcast, which is available on iTunes, YouTube or my website http://www.jenniferjames-author.com.

First, I asked Heather to give an overview of how acupuncture works to facilitate healing in the body.  Here’s some of her answer:

Heather: Basically, the needles are inserted in a spot that has a little more conductivity to the brain.  There’s nothing in the needles.  So, it’s just a little signal that says to the brain, ‘Hey!  We need a little more help over here.’  There are certain times where there is too much stagnation we call it in Chinese Medicine.  A stuckness, or a tightness of a muscle is a stagnation, for example.  Often times a needle in that point will just say, ‘Hey, release the stagnation.  Things need to flow through here.’ Heather:

In other cases, we would call a deficiency, where there is not enough energy, not enough chi, not enough blood flow in Western Medical Terms.  A needle in that point would say, ‘Hey.  We need a little more neuron firing.  We need a little bit more circulation to this area.

And the brain figures it out.  The body is healing itself.  It’s crazy to wrap your head around everything that your brain can do.  The needles are just there to sort of tap the brain on the shoulder, and say, ‘Excuse me, Brain, we’re here.  We just need a little bit of help over here,’ and then the brain has infinite organizing power to just figure it out and fix it.  Your body fixes itself.

I love that Heather’s answer fits in with the purpose of my work, which is to help you learn how to take control of your own health and healing.  Using acupuncture, you can get your body’s energy flowing properly, so that you can heal yourself.  How marvelous!

When I asked her about cases that she’s worked on that illustrate how acupuncture can effect healing, she gave this example:

Heather: I’ve had a lot of people with physical pain in the body.  Low back pain that is debilitating, and now they can totally function.  I had one patient who had a pretty severe case of scoliosis, and she’d say ‘I ate ibuprofen.  I ate, like, nine ibuprofen yesterday.’  And then she just can’t even stand up.  So, she could just barely drive herself to the clinic. And I’gave her a treatment.  She left and she said, ‘I feel a little bit better, and then two days later she’s like, ‘I feel amazing.  I don’t know what you did, but I’m back to 100%.’

Every now and then I’ll have somebody who comes in and I’ll say, OK.  It’s going to take 4 to 6 treatments and then we’ll re-assess.  And every now and again, somebody’s like, ‘Oh yeah, the insomnia’s totally gone after one treatment.  I’m fine.  My anxiety level is perfect. I don’t wake up feeling foggy headed.’  So, every now and again, I’m surprised at how well and how quickly the medicine works, but it totally depends on the person and a case by case basis, but, yeah, those are the good moments, for sure.

Although it is the exception to the rule, it’s amazing to think that one treatment could make such a huge shift in someone’s health in some cases.  Even the more normal 4 to 6 sessions to reduce low back pain, which is extremely common and difficult to treat using Western Medicine, is a gift.

Then, I asked her a question I’ve always wondered as an acupuncture patient.  What is it that the acupuncturist learns from looking at my tongue?  The answer is fascinating.

Heather: So we look at the color of the tongue.  If it’s more purpley, that’s a stagnation.  Like a bruise, right?  A bruise is considered blood stagnation.  So purple will point toward blood stagnation.  Red is heat.  The tongue can be divided into anterior, middle and posterior, like front, middle and back thirds.  So, the front third is the upper part of the torso, heart and lung.  If it’s red, that points toward heart heat or lung heat.  The middle of the tongue is the stomach, the digestive organs.  While the sides of the tongue point towards liver and gallbladder.  The very back of the tongue points towards kidney and urinary bladder.  We look at the different parts of the tongue to show us these different organ systems.

The tongue is really cool because if you want to know what’s going on inside of the body, look at what’s coming out of the body.  And the tongue is both an internal and an external organ.

It had never occurred to me before, but she’s right.  The tongue is both internal and external at the same time.

For my next question, I asked her how she sees acupuncture fitting into a well-rounded healthcare regimen, and with Western Medicine.

Heather: Western Medicine can be very good for things that Chinese Medicine is just not good for.  If you break your arm and have a compound fracture where your bone is sticking out of your arm, then don’t come see me.

If you have stage 4 cancer, I can help with the effects of radiation and chemotherapy, but at that point, I think it’s best to go to the Western Medical model.  Obviously, I see some limitation in the Western Medicine model, in that they basically wait until it’s too late to try to treat something.  So, it’s always a band-aid kind of a treatment.

For the preventative side of it, obviously, the acupuncture is best.  If we’re doing preventative medicine at the onset, at the beginning of your low back pain, you start seeing an acupuncturist, and you start doing yoga, getting the corrective exercises, then 10 years down the road you’re not that candidate for low back pain.

I very much see them as integrated medicines.  Integrated, as in, they braid together.  The hospitals in China have acupuncture in the hospitals.  People who get chemotherapy get the chemotherapy in one arm, and Chinese herbs on the other arm. So, they can reduce their nausea and their low energy, and it’s very, very effective.  I would love to see Chinese herbs administered intravenously in the hospitals here, and we are gaining some traction for studies that they do and things that they can treat.

But there are certain things, like IBS, that a lot of people suffer from . . . Western Medicine is pretty clueless about what causes that. And, in Chinese Medicine, we have a theory for what causes it.  It’s liver overacting on spleen, and we know how to treat it very, very effectively.

This image of a chemotherapy patient receiving simultaneous infusions of chemo and Chinese herbs is so wonderful.  It gives me hope to think that these two very different types of treatment can be wedded together to create a more holistic and more effective approach to healing.  The knowledge that acupuncture is effective for IBS is extremely helpful as well.  I get a lot of IBS patients referred to psychotherapy because doctors feel that it is a psychological illness.  Unfortunately, treating IBS with psychotherapy hasn’t proven very effective, in my experience.  In the future, I’ll refer these patients to acupuncture.

After this, Heather and I discussed the importance of self-care, self-love, and seeing oneself as inherently worthy.  She told this wonderful story about the Dalai Lama:

Heather: There’s a story about the Dalai Lama. He had been coming to this science of mind meeting, with like, neuroscientists, or neurologists.  I don’t know.  Brains.  Really smart people, at like MIT.  They started to talk about self-esteem and how that leads to different issues, and he was, like, ‘Hey, can we time out for a second?’  And he went back and forth with a translator for a while about the concept of self-esteem because in the Tibetan language, and the Tibetan way of thinking, they don’t have a concept of self-esteem because every single life is a precious human life.  Every single one.

And so, you could see he was really confused, and he was like, ‘Well, how many—do lots of people suffer from low self-esteem?’ And they were like, ‘Yeah, yeah, yeah.  This is a thing.’  And he was like, ‘Well, how many people in this room suffer from low self-esteem?’ And, like, everybody raised their hand, and he was shocked.  The idea of having low self-esteem was shocking to him.  And he’s not conceited at all.  He’s the most humble human being on the planet.

It’s nice to take a step back and see the things that are just ingrained [like the concept of low self-esteem].  It’s like we’re swimming in this water, and then, hold on a second. What about this water?

If you would like more information about acupuncture and Chinese Medicine, Heather recommends the book The Web That Has No Weaver by Ted Kaptchuck.  She also, quite generously, offers herself as a resource.  She says that you can feel free to contact her at her website, http://www.recoveringgypsy.com, and send her a message through the link to request an appointment.

Youth Doesn’t Equal Health

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.

The Person I Truly Needed to Fall in Love With

I realize that I’m a few days late, but I have some Valentine’s Day thoughts to share. Valentine’s Day is always a difficult day for me, whether I’m coupled-up or not. This year I’m not in a relationship, so I had plenty of time to reflect on past romances. In the initial incarnation of my book, I’m Sick, Not Crazy, I weaved in a subplot of my relationships getting healthier as I did the things that made my body healthier. However, after some initial feedback, it looks like that plot may end up being my second book, but since this is my blog, and I can write whatever I want, I have a few things to say about love.

When I was 18 years old, I married my high school sweetheart. Even writing that line makes me feel painfully embarrassed, but it seemed like a good idea at the time. We’d been dating the entire four years that I was in high school, and I was raised in a conservative Christian home, so marriage seemed like the obvious and right next step. I was excited to get down to the business of being a wife, but the very first week that we were married, I realized I’d made a grave error. My ex-husband was in the Marine Corps, which had been the source of small problems between us while dating, but after the wedding, he began treating me like a drill sergeant treats a recruit.

During that first week of our ill-fated marriage, he became angry with me because I forgot to do something that he asked me to do. It was a small something, and I offered to do it as soon as he brought it up. Instead of accepting my offer to complete the task, he backed me up against a wall and screamed in my face for what seemed like a half an hour. I held my breath and closed my eyes, bracing myself for the punch that I expected, but didn’t come, while tears streamed down my face. Not only did I never forgive him for that, but it happened again . . . and again. Over the six years that we were married, he humiliated me in public, spoke to me like I was an idiot, screamed at me, and generally abused me. I didn’t realize that it was abuse at the time. I believed what he told me; that it was my fault, and if I could just be better, he would treat me right, but no matter what I did, things failed to improve. Now that I’m a therapist, and have training in matters of power and abuse, I realize that he didn’t abuse me because of anything I had done. He abused me because of him; because of his own internal feelings, and there was nothing that I could have done to change them. When I was 24 years old, he left me for another woman that he’d gotten pregnant, and I was relieved.

After my ex-husband left me, I met a man at work that I’m going to call Justin. There was an instant and strong attraction between us, and after he put up some initial resistance, we started dating. One day I was putting on makeup in his bathroom before work, and the bottle of liquid foundation slipped out of my hand, flew through the air, and splattered everything around me, including the carpet. Frantically, I started trying to clean it up, hoping to have it done before Justin saw, but I heard Justin coming into the room, and my heart started to pound. My ex-husband would have lost his mind over something like that. In his mind, there were no accidents, no mistakes, and no forgetting. Instead, Justin laughed and started helping me clean up the mess. I fell in love with him, hard, in that very moment, and our relationship is one of the more positive experiences of romances I’ve ever had. Justin and I had beautiful long talks about everything, and I believe that he loved me just as strongly as I loved him.

Unfortunately, he kept finding ways to sabotage the relationship. He told me that he didn’t ever want to get married and have children again (he already had two daughters from a first marriage). At age 24, I definitely envisioned having children of my own, so I broke up with him. However, he kept changing his mind, and after breaking up and getting back together over and over again for the next 10 years, he finally proposed marriage. We started planning a wedding, and I thought that I was actually going to get the relationship that I had always wanted with a man that I thought I couldn’t live without. It wasn’t meant to be. A few months before the wedding was supposed to occur, Justin announced that he was going to move to Texas because his ex-wife was going to be retiring there after getting out of the Navy, and he needed to be near his daughters.

If they had been little girls, I would have completely understood, but they were aged 16 and 18, and I was in the middle of establishing my career as a therapist. Plus, I was never going to be in a relationship again where my needs were not considered. Justin telling me that he was going to move to Texas, and that I could choose to either come with him or not, triggered my abuse trauma. I didn’t have the language for it at the time, but I felt it in the deepest part of my being that I couldn’t form a life with a man who didn’t talk to me before making a decision about where we would live as a couple. I gave the engagement ring back.

Justin contacts me here and there, but we’ll never get back together. Not because of his moving to Texas just before we were supposed to get married, but because of what happened afterward. After Justin left, I felt bereft and didn’t know what to do with myself. I needed something to put my energy into, and I found it in the local San Diego swing dancing community. The love I’d felt for Justin easily transferred to dancing, and I was dancing 4 to 5 nights per week, until one night a man I was dancing with dipped me so roughly that I sustained a serious whiplash injury. Within a week of the injury I was so sick that I couldn’t keep any food down, my vision doubled, and my cognition was so wonky that I couldn’t even make basic decisions, like whether to turn right or left. This went on for over a year, and at the worst of it, I was certain that I was going to die, whether of starvation, or by my own hand, I wasn’t sure, but I wanted to say goodbye to Justin before it happened. I called him and told him that I was sick. His response was to tell me that he couldn’t keep doing this. I didn’t expect him to do anything except say goodbye back, but instead he made even my illness about himself. That was the moment that I knew it was really over between us.

After a year and a half of an illness that nearly killed me, I was walking down the street toward Mission Beach and I met a man we’ll call Andrew. He was beautiful. Probably the most attractive man that I’ve ever dated. We had a lot of fun together, and traveled all over the world: Australia, England, France, Thailand, and more. Andrew and I moved in together after 3 years of dating, and lived together for two years before I moved out. Living with him was impossible for me. He spent all of his time in front of the television, completely numbed out. The TV noise was overwhelming to my sensitive nature, and living with someone so absent made me feel more lonely than being alone.

After moving out, I decided that I must be doing this dating thing completely wrong. I’d missed the training that most people get in early dating by being with my ex-husband so young, and for so long, so I did what I always do when I need to learn something new–I took a class. Dating coaching was extremely helpful and motivating, and I spent most of my time outside of work on dating apps and going on dates. After an exhausting few months of fruitless dates, I met a man I’ll call Steven, and fell crazy in love with him. Steven was almost divorced when I met him. If he’d told me on the first date that he was in the middle of a divorce, I wouldn’t have gone out with him again. Unfortunately, he waited until a few dates in to tell me, and I was already hooked. I’ll never know if Steven felt the same way about me that I did about him. I believed that he did for the 10 months that we dated, and he was the one that initiated each next big relationship step. He suggested that we go on a trip to Kauai together. He suggested that I go with him to Connecticut to meet his family. He suggested that we move in together.

That last suggestion ended up being the death knell for our relationship. Steven lived about a 40 minute drive away from me with no traffic. With traffic, it would have taken me about an hour to get to work from his place. He worked about a 10 minute drive closer to where I lived, so it seemed logical to me that we could move somewhere in between where I lived and where he lived and we would both be happy with our commutes. However, Steven’s comment about where we should live was, “I’ve decided that I’ll watch the condos across the street and we’ll move in there when one opens.” You’ve decided? Flashbacks to Justin deciding to move to Texas, and my ex-husband backing me against the wall to scream in my face whenever I did something he didn’t like engulfed me. After giving it a day or two to think, I approached Steven and told him that his location posed difficulties for me, and that we should talk about where we would live together and make the decision as a couple.

This proposition seemed completely reasonable to me, but in my heart I had already decided that if he insisted that we live in his area, I would drive the hour to work each day because I loved him so much. All that I wanted was for him to be willing to talk to me about it.

He wasn’t.

Instead of talking to me about the issue and coming to a resolution, he told me that he “didn’t have it for me,” and that he really wanted to re-engage in fighting with his ex-wife. I was beyond shocked . . . and heartbroken . . . and broken.

It’s been over a year since then, and I’ve been engaged in the deepest and most intense self-healing work I’ve ever done, and that’s coming from a licensed psychotherapist. What I’ve discovered about myself is that I’ve been relying on others for my sense of value. This strategy was the one that I was taught by movies, and songs, but it’s unsafe because I can’t control the behavior of these other people. When they leave me, I lose my foundation, and I’m left shaking and alone. Unfortunately, I’d been abandoning myself for these others all of my adult life, when what I really needed to do was stay with myself and love myself first. Loving myself first sets the model for the love that I receive from others. When they see how I love myself, they know that they have to love me with that same intensity and kindness, and nothing less will do. Most importantly, if they leave me in the end, I still have myself to love, and my foundation is still strong.

I don’t know what your history is with romance, but no matter what is going on with you, I invite you to also love yourself first, and to cultivate your relationship with yourself. The more you’re good to you, the more that you will inspire others to be good to you. Best of all, if you are your own best partner, you won’t be hungry for love, and you will only accept the very best.

Compassionate Care

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.

The Necessity of Compassion

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.

Thinness Doesn’t Equal Wellness

I’ve been spending my morning searching health and wellness websites and blogs, and I’ve been rather shocked by how often a search for health and wellness turns up a website about diet and exercise. While I do believe that fitness and healthy eating are important to a healthy life, the message seems to be that being thin equals being healthy.

I used to believe this myself, and I spent inordinate amounts of time trying to be thin even though my body is happier on the curvier side. Then, I became terribly ill, and was unable to eat or keep down food for over a year and a half. My body shrunk down to the thinnest I had been since graduating high school. All of my bones were visible through my skin, and I barely even needed to wear a bra.

It was weird just how many people thought this was an attractive look for me. People started stopping me in parking lots and asking for my number. One woman even asked me if I was famous. Another person who was close to me, and knew what I had been through, said, “You look great. Have you been working out?”

Instead of enjoying this attention, it made me angry and sad that the message that thin equals healthy and beautiful is so pervasive in our culture. I was not healthy. I was literally starving to death. Through this experience, I got a taste of what it must be like to live with an eating disorder. Although you’re slowly dying, well-meaning people keep saying that you look great. What a confusing message.

Having recovered my health as well as my former curves, I do my best to love my body and myself just as I am. Being model-thin didn’t make me happy, like I had once believed it would. In fact, I had never felt worse than I did at that time, and I hope never to feel that bad again. In sharing this story, I hope to empower others to love their bodies just as they are. That doesn’t mean that you don’t do your best to live a healthy lifestyle. It simply means that you are worth more than what you look like. You are worthy of love and belonging just as you are, and you are especially worthy of your own love. So, give your body a hug and thank it for carrying you through life and helping you to experience the world. You deserve it.