Chronic Pain and Cake: A Step in the Right Direction

I went to see the new movie Cake last week. I was anticipating the film because, as someone who is intimately familiar with the physical and emotional ramifications about chronic pain, I was excited to see that someone took the effort to produce a movie about chronic pain.

Cake Movie Chronic Pain: A Review In my opinion, the movie finally sheds some much needed light on the ramifications of chronic pain, but no one movie can cover all of the facets of pain. I hope this movie will open the door for more discussion and movies. Invisible illness, chronic illness, spoonie

Prior to go going to see the movie, I searched in vain to find out from what “illness,” the main character was suffering. I couldn’t find anything. I read great reviews about the movie from the Arthritis foundation and other chronic illness organizations. Articles on mainstream websites were popping up about chronic pain because Cake was about to be released. So, regardless of the character’s diagnosis, the movie was bringing attention to a large group of people who are largely ignored. Society idolizes youth, beauty, and health, so there isn’t much attention to those in pain.

Jennifer Anniston’s character, Claire, was suffering pain following an injury. However, she was in the middle of a painful rehabilitation process. She didn’t have an autoimmune disorder, neurological condition, or something with little to no chance of recovery. Additionally, there were circumstances in her life that added to her emotional pain that already came from being in chronic pain. So, I am afraid that audiences will perceive her emotional pain as related more to her circumstances surrounding the injury, than from the pain itself. [Note: I don’t want to spoil the movie, so I am being purposefully vague.]

With that being said, the movie does show how emotionally painful chronic pain can be. In fact, the opening scene is about another chronic pain patient who commits suicide because the pain was too much for her to handle anymore. That can be an extreme example of the results of chronic pain, but the isolation (both from immobility and self chosen), as well the anger, frustration, and depression that results from living with long term pain is real. It affect millions every day. The Institute of Medicine estimates that chronic pain affects 100 million Americans a year. You probably don’t meet them because, they’re in pain. They stay at home where it is more comfortable, where they don’t have to deal with the ignorance of the general public, where they suffer silently.

My largest issue with the movie, since it was being marketed as a movie about chronic pain was that Jennifer Anniston’s character was suffering from an injury with the possibility of recovery. Yes, the road is long and hard, but there is an endpoint. There were the scenes where she was asked her if she wanted to get better, implying that getting better from chronic pain is a choice. I agree that in her case, she lacked motivation to a certain degree, which would have helped her. And in some cases of non-injury related pain there are definitely lifestyle adjustments that can be made for most conditions to avoid adding pain or minimizing pain, but I hope the general public doesn’t confuse an injury with an autoimmune disorder or neurological condition, etc.

Confusing those conditions would only reinforce the pervasive attitude that people in chronic pain, who will only be able to manage symptoms and pain, are actually lazy and unmotivated because they can’t pull themselves up and out of the pain and depression. I am motivated to manage my pain and conditions, but pain management is an art, not just a science. Every person is different, so it takes trial and error on both the part of the doctor and patient. I am by no means lazy, but because it takes a long time to work on pain
management does not mean that I am not trying.

I know that a single movie cannot even begin to touch on every topic related to chronic pain, though. So, I think Cake is a great start! Another reviewer pointed out that Claire even had a solid support system. Claire was supported both emotionally and financially. She pushed them away, out of her pain. I can identify with pervasive anger and frustration that makes me want to shut everyone out. The sad reality of chronic pain, though, is that there are many people who lack the emotional and financial support systems to help them cope with chronic pain, so they only feel more pain as they try to juggle a job and family and friends who think that they’re just lazy because the family doesn’t understand the condition or can’t understand why the patient can’t just “get over it,” or “be tougher.”

One thing, though, that Cake did wonderfully, is show how a patient’s pain affects everyone in his or her life. Regardless of the cause of pain, it hurts the spouse, the parents, and anyone who is a caregiver. Her pain caused her to lash out at the people who loved her. Not only did that hurt her husband and her caregiver, but seeing her in pain like that could not be easy on them, either.

After I saw the movie, I looked through Twitter for the hashtag “CakeMovie,” to see what people were saying. Unfortunately, they were saying exactly what I thought they’d say. Their comments only served to underscore the fundamental misunderstanding among the public that does not suffer from chronic pain about the emotion ramifications of chronic pain.

My favorite response to the movie came from a self proclaimed “actress.”

uninformed person
When I told her that “feeling sorry” for the main character was not the point and that her response was as I mentioned above, an indication of society’s fundamental misunderstanding of chronic pain, she said that a movie need “hero.”

I don’t really know anything about writing fiction or movies, but I do know that there are no heroes in Chronic Pain. There are victims. Victims of circumstance and illness. I’m not saying that patients need to have a victim mentality, but part of processing the injury or illness is grieving for the loss of health. People can move on and become empowered to be their own advocate with doctors, make lifestyle changes, and reclaim their lives, but they are still at the mercy of the illness. A patient can be as empowered as they want, but they cannot actually prevent what is happening to his or her body. We are all still at the mercy of symptom flares that have no particular cause that we can find. Perhaps the filmmakers were trying to make that very point.

Claire is not a hero. Chronic pain doesn’t have a clean ending, where everyone can throw a party and celebrate recovery. There are no remission parties or celebrations. It’s a process. Even if/when Claire reaches a place where she is no longer self medicating the pain, she’ll always be scarred by the years of pain. It doesn’t leave overnight. I may be having a “good” day, but I don’t meet a friend for coffee because I’m afraid of causing pain on accident. It can be easier to sit still and hope the pain doesn’t come back because the memory of pain and how it messed up my relationships will still be in the back of mind. I would do anything to avoid that, even if it means missing out on new opportunities.

I hope that this movie will open the door for movies about the pain of searching for a diagnosis and treatment or what it’s like to be young and have to readjust all of your hopes and dreams when you become sick with something that is not a matter of recovery, but a matter of lifelong pain management.

The movie does seem to be opening the door for discussions on chronic pain–I saw mainstream media covering the topic a lot more leading up to the release! So, I don’t know how anything can educate people about chronic pain, unless they are unfortunate enough to experience, but maybe news articles, movies, television shows, and blog posts can slowly chip away at the ignorance surrounding some of the issues.

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Categories: Chronic Illness Tags: ,
But You Don’t Look Sick: An Open Letter

[Note: This post was updated on 1/12/2015, upon further reflection of the subject.]

So, I’ve been sick a few more months than when I originally wrote this post. Every single day, I learn more about what it’s like to be chronically ill and live with all of the ups and downs related to my conditions, as they take turns flaring and receding. I wonder if the conditions use some sort of lottery system, but I digress. Anyway, I’ve put some more thought into this post and updated it, hopefully for the benefit of all the sick and healthy people everywhere. As I talk to more people with chronic conditions and see that the perception of what being sick looks like has an impact on more people than just me. It affects so many areas of life for every chronically ill person.

but you don't look sick open letter

Hi there,

You may have just met me. You might be my good friend. You might even be my family member. I just wanted to take a moment to talk to you about the phrase “you don’t look sick.” You know what, you’ve never seen me at home alone. So, yeah, I don’t look sick right at this second. To borrow a phrase from the ever wonderful writer Ariane, my pants should not have to match my pain level. Sometimes, putting on a dress helps my mood, even if it doesn’t help my pain. I’m sorry if that conflicts with your idea of looking sick.

I don’t mean to sound ungrateful for what you mean as a compliment, but it is kind of insulting. The phrase you don’t look sick minimizes and dismisses my pain. So, if we just met, and I opened up to you about my painful neurological condition (and I didn’t even mention the other conditions with which I live), please don’t think you’re complimenting me. If you follow it up with “but you’re so beautiful,” you are unknowingly implying that being sick should make me ugly. Maybe you think I’m exaggerating my pain because you perceive me as beautiful. Beauty fades, but my pain won’t.

This letter is not about only me, either. By telling me that I don’t look sick and that I’m beautiful, you are reinforcing the idea that if anyone wants his or her medical conditions taken seriously she should look a certain way. Maybe I should not take any pride in my appearance if I am sick, so your conceptions of illness and my illness will fit together. The preconceived notions of what being chronically ill looks like is what prevents people from seeking the medical attention that they need, receiving the benefits that they deserve, and being treated with dignity. There are people who cannot even get the much needed family support during their illnesses because their families do not understand that being sick can present in many different ways. Sick looks different for different people on different days.

I would like you to know that it probably took me twice as long to look passable for public viewing than it did before I got sick. Instead of wearing contacts, styling my hair, putting on make up, and wearing an outfit that isn’t entirely from the “active wear” department absolutely every day, like I did in the past, I only do that once or twice a month. [Side note: We can talk about the irony of wearing active wear in my condition later.] You don’t see me at home. You don’t see me the way my family does. My situation is so excruciatingly embarrassing that even my doctors do not see all of the pain. My mask is reinforced by years of negative experiences with showing vulnerability. I dread necessary doctors’ appointments because I know that it will mean that I have to take a shower with energy that I do not have.

I only let you see what I want you to see because you would be uncomfortable with the truth. Plus, I do not want to be humiliated. I want to be treated with dignity. So, I only leave my house when I can be presentable, which is not often. Therefore, I become isolated and lonely because I don’t have energy to make myself look like my former self. There should not be any stigma when I can’t wash my hair because I am that sick, but there is judgement because you can’t see my whole story in a glance. That’s why you only see me when I don’t look sick.

If you are another person with Dystonia, I feel really bad for you. We share a common bond, which I thought you would appreciate. But when you tell me that I don’t look like I have Dystonia, just because Botox helps me to hold my head straight for 8 out of every 12 weeks, you are insulting me, too. I am sorry if Botox doesn’t help you hold your head straight, but I experience life altering pain, just like you.

I also want to take a minute to address a few more problems with the phrase you don’t look sick. You may know about my illness from my blog or from me telling you about it. Either way, neither on my blog or in conversation, do I lay out my entire medical history. I can’t even explain it all to a single doctor during an hour long visit, even if I bring notes and timeline. I don’t tell you about the hours and money that have gone into biofeedback and neurofeedback, the tests that I’ve had run, and all the extra things that I require to maintain a manageable pain level. I’ll never tell you how many doctor visits that I average a week or how many pills that I’ve tried and had horrible side effects or allergic reactions. I won’t tell you about the pain of when the doctors don’t know what to do with you — yes, I have been turned away by primary care doctors because I’m too complicated — they either throw a lot of pills at me or they take their frustrations out on me by yelling at me. It may sound crazy to you, but you probably only see the doctor when you have a sinus infection. So, in addition to dealing with pain and being sick, I deal with more frustrations than you could ever imagine. When I first got sick and didn’t understand why the doctors were yelling at me, it felt like I was slowly losing my sanity. That makes me feel even worse. So maybe I brush my hair and try to look ok when I leave the house, but I carry so much pain behind the facade.

When I hold my head straight really quickly, so someone can take a picture, because I’m wearing makeup and plucked my eyebrows for the first time in two months, don’t think that’s my everyday experience. I go out of my way to document the moments that I can enjoy life, so when everyone else is living life, and I am alone in the recliner, I can see some evidence of that one time I enjoyed playing with my dogs at my grandparents’ house.

So, I if you’re a close friend or family member, I appreciate it when you tell me that my voice sounds strong or notice an improvement in my symptoms. But, if I don’t know you or you don’t think I look sick, you aren’t complimenting me.



Related Posts:
Rethinking Hospitality (for the Chronically Ill)
Cervical Dystonia
Managing Cervical Dystonia Pain
Invisible Illness

Categories: Cervical Dystonia, EDS, Sick Tags: , , ,
When Life Doesn’t Feel Right

I woke up the other morning. I woke up, which was pretty amazing because I felt pretty awful.

When Life Doesn't (1)

Once I finally dragged myself out of bed, just long enough to grab a bite to eat, my alpha stim machine, and an audiobook, I slid right back between the covers.

I listened to Sherlock Holmes. I listened to CS Lewis’s The Problem of Pain, hoping to understand more about my problem of pain. I didn’t. Pain is universal, which I already knew. Honestly, the intellectual understanding of suffering does next to nothing to change how my pain receptors, nerves, and body functions. I still felt terrible.

I could feel the depression creeping into my thoughts, as my husband left with his brother to enjoy a day that I had planned for all of us. It’s not his fault. It’s not my fault. I’m not angry anymore. I’m sad. I am so very sad.

At my age, I should have boundless energy. I should be able to live life on my own terms. In fact, I used to stay up all night, get up early, and generally enjoy life. Now I dread going to bed because I hate the time between laying down and falling asleep. I hate waking up because I know that I will hurt. No matter what, I can’t get comfortable.

I can’t make plans in advance anymore. We had purchased tickets to a local minor league baseball game for that day, but I inadvertently bought the tickets for the wrong time–not that I felt like going anyway. My husband and his brother ended up going to a local amusement park without me.

I purchased tickets to see my favorite band several months ago, but when the concert came, I wasn’t able to go. That was the 4th time this year that I missed a concert that I purchased advanced tickets for–and everyone knows that I don’t like to miss a good concert. There are retreats that I want to attend, but with the deadlines looming, I have no idea on August 1 how I’ll fell at the end of October.

Life doesn’t feel quite right anymore. Life hurts. I’ve tried adjusting to the new normal, but it sucks. The new normal is full of pain, anticipated pain, and sometimes new pains that can’t be explained, yet.

Now I sit here, typing, because writing is my only form of therapy that works, emotionally at least. I don’t know if I’ll ever hit publish on this, but if I do, it’s because I want other people to know that they’re not alone. I have no answers. None. The only thing that I’ve figured out is that if I don’t take care of myself it only gets worse. I haven’t figured out how to make anything better–just not to aggravate anything.

I want to pick up my coffee and drink it, but the tremor in my hand, which is making typing painfully slow–yet easier than handwriting–is preventing me. There is nothing more frustrating than not controlling your own body. Millions of people live with movement disorders. My heart hurts when I think about all of the people who can’t pick up their own version of the coffee cup because their brains are telling their bodies to move without their consent.

I don’t know what to do anymore. Life doesn’t bear even the slightest resemblance to anything that I imagined for myself. Yet, there are the unexpected joys that I wouldn’t have, if I wasn’t sick. I wouldn’t be looking at the two sweetest dogs in the world right now. I wouldn’t value my family the way that I do. Also, I may never have met Brian. I feel like a drain on him, but he still smiles at me. He loves me. I don’t know why.

Again, I know that life is not living up to expectations is a part of the human experience, not just for those who are sick. I have perfectly healthy friends who are in unhappy marriages, jobs they hate, or haven’t met the right person yet. They all went to college with ideas of weddings after graduation, white picket fences, and dream jobs. Disappointment, like pain, is universal. I know I have written about hope. Hope that God is making all things new. He makes the broken things beautiful (cue Gungor), but being content with timing is so hard

Categories: life thoughts Tags: , ,