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.